Waiting day today. Waiting to go back to Addenbrookes Hospital. The same hospital where Mikey died 6 weeks today. We arrived at the same time as Mikey was coming from the theatre it was a peculiar feeling.
Both Tim and i were quite subdued.
Tim managed to get in to see the consultant early and that made it a little easier.
Tim also had a scan straight away by mobile scan. I wonder why that wasn't used for Mikey in theatre?
The results of the scan were good, they did his neck today. He has however high blood pressure. Tim said to the Dr that he was there under duress!! He was told it was the right thing to do, send him to hospital. He also said to Tim that he knew that he didn't want treatment but he could either have something done at the hospital today or to go back to his own Dr. Tim chose his GP. The consultant said i will let you go as long as you promise to go to your GP. Tim said he would. He was told that high blood pressure was serious and should not be underestimated, that a simple thing as medication, one tablet can resolve his problem.
So Tim was quite positive and actually spoke about Mikey quite a lot today.
Tim felt that he was let down by the system and cant get his head around why he had to have the stones removed, surely he should have been put on the list and risked kidney failure that risk surgery to remove a stone.
Tim also said that he thinks about this every day and feels that Mikey would still be here if not for that.
It was good for me to hear him voicing the same things that i have been thinking but have not been able to discuss with him.
6 weeks and Tim said it still doesn't seem real. Its as though we talk about it but have put it in a box in our minds and not wanting to look inside. We coped like this with his CF when he was younger. Listened to everything and packed the information away until we needed it. Well this time i don't think that will work, well we will see wont we.
I feel much better today knowing that Tims OK. What a worry for us, i think Tim must have been worried even though he said not, he didn't think today was a waste of time after all.
Driving home and thinking of Mikey it was though i was trying to grasp mist. I can visualise Mikey i can see that smile of his and the way he always waved and try to grasp him and nothing. I hope that my vision of him doesn't fade like the mist. I want to keep that colour and life, so when i close my eyes that's what i can see. I never want to forget.
His tiny piece of hair, how i wish we could have another Mikey born from his DNA but not the cf gene or the sma gene wouldn't that be grand.
I look at women with their young children and want to say cherish them, and when i see young men of Mikey's age i feel angry and bitter that he isn't still with us.
I never wanted to be a bitter person, god i hope i lose that feeling.
There are no rules for grieving i have found. There is just this changing overwhelming wave of emotions they wash over you at random times of the day.
Its as though one minute life is normal, then you realise no things are not right, then you just cry. I find myself not thinking about Mikey yet suddenly this urge to wail and weep. I know that's not good especially when i am in the middle of a shop, walking down the street but i cant help it/ The tears well up and i try hard not to let them flow, to no avail. I find myself crying inside now. Silently sobbing but showing a normal appearance.
How can i continue to live as two people, the one that i show the world or the real me.
If emotions could be described then i would be a whirl of grey and black. Claws dragging through this mass of unkempt hair. A manic, deranged, screaming, weeping, intangible substance wandering though existence with no direction, lost and lonely and so dreadfully sad. And yet desperately trying to find her way back to just being. Stretching out towards those people who have offered friendship and support no matter what. True friends who wish to save this poor wraith from herself. I remember you. I see you. I will reach you. But not yet, oh not yet. But friends wait for me i will come back. Thank you even when I'm not myself, thank you for being there. I value you, i just cant be me yet.
God where are the other mums like me. CF mums who have lost their loved ones like me. HAHAHAHA I keep saying God and yet I'm a non believer. Well is that a surprise. See a bitter bitter woman. Oh well beyond hope? praps not.
I was once told that my birthmark was a punishment for something i did in my past life, or to make me a better person in my next. Well excuse me but hat would be three of my lives buggered up wouldn't it. I must have been wicked, or am i wicked? or will i be wicked? now if that's not confusing what is?
I'm going mad. As in the Queen song I'm 'only knitting on one needle' Wasn't that I'm going mad or something like that. Mike would know and so would Tim.
Music has alwayss been important to all of. The love of different genres has played havoc at times in the house.
Me i love most music but not Michael Bubble or the theme music from James Bond that Tim plays endlessly.
I quite enjoy a bit of AFI, Metallica, Tina Turner, Eva Cassidy, Cher, Police, Rod Stewart, Michael Jackson, Kings of Leon, Snow Patrol, Chicago, Erasure, Communards, Scissor Sisters, Debbie Harry and Blondie, anything from Motown xxxxx. ELO and the list goes on, oh Black Box Ride on time. God i can remember really dancing to that. Memories.
On that happy note i will leave this page and remember that
Tomorrow is another day.
Thursday 30 September 2010
Wednesday 29 September 2010
Day 33
My goodness I'm in the dark today. Placed there by my loving husband!!
Phone rang early this morning and it was Addenbrookes hospital to ask Tim to come to hospital tomorrow at 2.30pm. Well to say he wasn't happy is an understatement!
Tim has said that he does not want to know if he has anything wrong with him ever! It doesn't matter what or when he would prefer not to be told that he has an illness. That's the way he wants it. I told him that that is selfish what about Tom and I. To say you just don't want any treatment even for blood pressure is ridiculous. I mean if you have something that's treatable why on earth would you not want it made better.
It really is beyond comprehension. To say you just want to go from day to day and then just die is beyond me.
Mikey fought so hard to stay alive and here is his dad trying so hard not to live. Where is the sense in that. He said I should respect his choices. That's fine but as i said now if you have a stroke and it doesn't kill you then what. He said he still does not want any treatment. He wants to be left alone. And i will be left to look after him. If hes awkward now what the hell will he be like if he is incapacitated and knows it. He said i was to help him!!! I don't think so!!! Yes i will look after him but i wont help him not to be here. So he may have to think again.
I have said to him you may be right and there is nothing wrong at all but surely its better to know that. Tim said i will worry if there may be something and i will worry if there is something so whats the difference. I said its knowing that makes a difference. But it fell on stony ground, and i have been in the dog house all day!!
Whats new!
I was going to let his sister know and then thought no best not. He told me in no uncertain terms that if he tells me something it remains between the two of us, but now he wont tell me a thing because i had to open my mouth and tell the Dr. Anyway why worry someone else unnecessarily. I said well best you tell me who i can talk to what i can say and how to say it because as soon as i open my mouth its wrong!!!
I need all this aggro like a hole in the head. Its a strange thing. Is all this related to the grieving process. Well i don't know because as my other posts have said there is no support group. There well be other people out there who can relate to how i feel but as yet they remain a mystery to me.
I managed to get hold of Claire today, and hopefully she has found a job. I hope so it will be a new venture for her and she can rebuild her life. As she should.
I know that Mikey felt very strongly that we should get on with our lives when he passed away. Its not so easy for me. Tim is trying to respect his wishes and is adamant that we should move on and do things. I however am clinging on to everything and cant move forward. I'm coming to the end of my life, certainly closer to the end rather than the beginning. Claire is young and will remake her future in time and i believe will do Mikey justice with that. Mikey will i hope remain an important part of her past. But me there is no past present or future. It just is. I'm his mum and always will be. I wont let go.
Do i present myself to the world as a coper and all is well and inside keep all my feelings close. Maybe that is the way in which Tim and I can continue to live together because right now at this very minute i could just pack a bag and go. I don't know where, how or what i would do. Nothing i expect just become a bag lady.
How strange that so many CF parents separate, i know Mikey was quite proud that we were still together and that we had been discussed by other CF patients that we were the exception!!
Now however, now Mikey has gone i am reflecting back on how hard it has been. How i struggled when he was small because Tim worked shifts and i was on my own so much of the time. Family never helped, really because they either had there own families or because Mikey was now well and they were unsure of how to manage.
The nights i spent up with him during an infection just checking if he was breathing. The days and nights of endless physio to keep everything on the move. The IVs that took so long to give because we lived outside the catchment area for an IV pump. The CF nurse didn't come out to March as the hospital wouldn't fund the travelling!!
Yet we managed through all the hospital visits when i had done a night shift. Later when Mikey was older and wanted to attend clinics himself i would take him and then sleep in the car. His appointment would be at 10 for example and he would still be there at 12md.
That's just how it is. We managed and no complaints no worries we just got on with things. Mikey would have to keep talking to me to keep me awake.
Looking back now its amazing that we did all these things. Still manage the home both boys and Tim.
It sure is evident now how much our lives revolved around Mikey and how Tom must have felt neglected. Do you know i realise he was. Not with intent but because we wanted Mikey to keep well. Everything stopped to make sure his IVs were given hospital appointments were attended etc. Tom never once complained. That maybe why as they got older they were not as close as they were. That is sad.
Well on that happy note i will close. Goodness knows what will happen tomorrow but, it is, after all another day..................
Phone rang early this morning and it was Addenbrookes hospital to ask Tim to come to hospital tomorrow at 2.30pm. Well to say he wasn't happy is an understatement!
Tim has said that he does not want to know if he has anything wrong with him ever! It doesn't matter what or when he would prefer not to be told that he has an illness. That's the way he wants it. I told him that that is selfish what about Tom and I. To say you just don't want any treatment even for blood pressure is ridiculous. I mean if you have something that's treatable why on earth would you not want it made better.
It really is beyond comprehension. To say you just want to go from day to day and then just die is beyond me.
Mikey fought so hard to stay alive and here is his dad trying so hard not to live. Where is the sense in that. He said I should respect his choices. That's fine but as i said now if you have a stroke and it doesn't kill you then what. He said he still does not want any treatment. He wants to be left alone. And i will be left to look after him. If hes awkward now what the hell will he be like if he is incapacitated and knows it. He said i was to help him!!! I don't think so!!! Yes i will look after him but i wont help him not to be here. So he may have to think again.
I have said to him you may be right and there is nothing wrong at all but surely its better to know that. Tim said i will worry if there may be something and i will worry if there is something so whats the difference. I said its knowing that makes a difference. But it fell on stony ground, and i have been in the dog house all day!!
Whats new!
I was going to let his sister know and then thought no best not. He told me in no uncertain terms that if he tells me something it remains between the two of us, but now he wont tell me a thing because i had to open my mouth and tell the Dr. Anyway why worry someone else unnecessarily. I said well best you tell me who i can talk to what i can say and how to say it because as soon as i open my mouth its wrong!!!
I need all this aggro like a hole in the head. Its a strange thing. Is all this related to the grieving process. Well i don't know because as my other posts have said there is no support group. There well be other people out there who can relate to how i feel but as yet they remain a mystery to me.
I managed to get hold of Claire today, and hopefully she has found a job. I hope so it will be a new venture for her and she can rebuild her life. As she should.
I know that Mikey felt very strongly that we should get on with our lives when he passed away. Its not so easy for me. Tim is trying to respect his wishes and is adamant that we should move on and do things. I however am clinging on to everything and cant move forward. I'm coming to the end of my life, certainly closer to the end rather than the beginning. Claire is young and will remake her future in time and i believe will do Mikey justice with that. Mikey will i hope remain an important part of her past. But me there is no past present or future. It just is. I'm his mum and always will be. I wont let go.
Do i present myself to the world as a coper and all is well and inside keep all my feelings close. Maybe that is the way in which Tim and I can continue to live together because right now at this very minute i could just pack a bag and go. I don't know where, how or what i would do. Nothing i expect just become a bag lady.
How strange that so many CF parents separate, i know Mikey was quite proud that we were still together and that we had been discussed by other CF patients that we were the exception!!
Now however, now Mikey has gone i am reflecting back on how hard it has been. How i struggled when he was small because Tim worked shifts and i was on my own so much of the time. Family never helped, really because they either had there own families or because Mikey was now well and they were unsure of how to manage.
The nights i spent up with him during an infection just checking if he was breathing. The days and nights of endless physio to keep everything on the move. The IVs that took so long to give because we lived outside the catchment area for an IV pump. The CF nurse didn't come out to March as the hospital wouldn't fund the travelling!!
Yet we managed through all the hospital visits when i had done a night shift. Later when Mikey was older and wanted to attend clinics himself i would take him and then sleep in the car. His appointment would be at 10 for example and he would still be there at 12md.
That's just how it is. We managed and no complaints no worries we just got on with things. Mikey would have to keep talking to me to keep me awake.
Looking back now its amazing that we did all these things. Still manage the home both boys and Tim.
It sure is evident now how much our lives revolved around Mikey and how Tom must have felt neglected. Do you know i realise he was. Not with intent but because we wanted Mikey to keep well. Everything stopped to make sure his IVs were given hospital appointments were attended etc. Tom never once complained. That maybe why as they got older they were not as close as they were. That is sad.
Well on that happy note i will close. Goodness knows what will happen tomorrow but, it is, after all another day..................
Tuesday 28 September 2010
Day 32
A grey day today.
It feels as though i have been walking through mud, everything has been an effort. Just being! has been an effort.
Its been another day of waiting perhaps that has been the problem. I don't really know. This damned central heating has resulted in us not being able to do anything so plans for days out have gone by the wayside.
I walked to town to the library in the trainers i bought yesterday and my goodness did i know i was wearing them!! They sure made my legs feel as if i had done a marathon. Well i can only imagine that at the moment!!
When i got home i tried to do some gardening. Next door has a bamboo plant that is invading our garden and springing up through the lawn. Huge roots i pulled up and they left a track through the lawn wear i pulled them out. Much to Tims dismay!!!
Well the boiler man came at 1.30pm this was our morning visit!!! and said oh yes you need a new switch and new valve. OK have you got them, well no i have to order them they will be here next week some time!! so a week of cold we have to suffer. Lets hope for a heatwave.
So we went to Hunny yet again for our lunch and on our return went for a good walk.
This evening Tim and i hardly spoke. Not for any reason i expect we both had our own thoughts to deal with, whatever they are.
Its been 39 years this week since Tim and I met. Little did we know them what our future would be.
We were 17 and like most teenagers had high hopes and dreams. We had youth and we were not bad looking then!! Tims not so bad now but sadly my face has all the hallmarks of time ravished experiences!
The bodies gone South as well. That also means that its been 39 years since Adie died i wonder now if it was the same month as Mikey do you know i cant remember. It all seemed so tragic at the time. My boyfriend dying in an accident going home to Luton from mine on his motorcycle. He was an only child and his parents never recovered from that, it haunted them. His mum died not long after, they say of a broken heart. I do think that's possible.
How odd that this has now come back to me. That's the thing with memories, always with you across time.
Tims in bed again as i write this, i have the quiet of the night and its comforting sitting here in front of the screen, typing away. It brings some normality into my life something to look forward to in many ways. Just off loading the days woes if possible.
I miss having the rush in my daily life, the hurrying and pressures of doing things at speed in order for me to everything done. Never having enough time in the day. Now here i am with time weighing so heavily on my shoulders. Its a burden this time i have. Maybe i should be enjoying the free time but I'm not. I don't know how Tim copes, i feel bored . Isn't that a strange thing to say at this time.
I look at the treasure box we have for Mikey and know that i have all the cards from the service to put into his remembrance book but i haven't opened it since we put all the cards etc in it. I will one day I'm sure. If i don't lift the lid then it hasn't happened. Is this denial, then if so that's where i am.
When you have children you expect them to outlive you. The balance of life has been taken out of this order for me and i cant handle that. Not yet, not yet.......
I was reading an article yesterday about CF and how there has been so much progress made in enabling longevity for the Cf sufferers, (oh and isn't that the most appropriate word!!!) and that now life expectancy is 30 years of age. Well Mikey sadly didn't get to that age. Would that have been long enough for us, i can say now yes i would be grateful for that but deep down i know that when that time came it wouldn't.
I have been looking at his photos and he looked so happy a few years ago. These are the images i want to have, but at the moment i am still stuck in the hospital mode, those last few hours and i so wish i can get past that and no matter how i try those images will just not go away. But maybe they will i hope so.
I cant even bear to look at the clothes i had on that day and doubt if i will ever wear them so i have thrust them to the back of the wardrobe because i cant bear to part with them either.
All Mikes medical stuff is still here and again we cant bear to discard them Its all part of having him near. I hope Claire will give us some reminder of him. We will see, we will see.
No story tonight I'm so cold. And so weary, not tired i wish i could sleep just bone weary. Old.
Oh well tomorrow is another day..............
It feels as though i have been walking through mud, everything has been an effort. Just being! has been an effort.
Its been another day of waiting perhaps that has been the problem. I don't really know. This damned central heating has resulted in us not being able to do anything so plans for days out have gone by the wayside.
I walked to town to the library in the trainers i bought yesterday and my goodness did i know i was wearing them!! They sure made my legs feel as if i had done a marathon. Well i can only imagine that at the moment!!
When i got home i tried to do some gardening. Next door has a bamboo plant that is invading our garden and springing up through the lawn. Huge roots i pulled up and they left a track through the lawn wear i pulled them out. Much to Tims dismay!!!
Well the boiler man came at 1.30pm this was our morning visit!!! and said oh yes you need a new switch and new valve. OK have you got them, well no i have to order them they will be here next week some time!! so a week of cold we have to suffer. Lets hope for a heatwave.
So we went to Hunny yet again for our lunch and on our return went for a good walk.
This evening Tim and i hardly spoke. Not for any reason i expect we both had our own thoughts to deal with, whatever they are.
Its been 39 years this week since Tim and I met. Little did we know them what our future would be.
We were 17 and like most teenagers had high hopes and dreams. We had youth and we were not bad looking then!! Tims not so bad now but sadly my face has all the hallmarks of time ravished experiences!
The bodies gone South as well. That also means that its been 39 years since Adie died i wonder now if it was the same month as Mikey do you know i cant remember. It all seemed so tragic at the time. My boyfriend dying in an accident going home to Luton from mine on his motorcycle. He was an only child and his parents never recovered from that, it haunted them. His mum died not long after, they say of a broken heart. I do think that's possible.
How odd that this has now come back to me. That's the thing with memories, always with you across time.
Tims in bed again as i write this, i have the quiet of the night and its comforting sitting here in front of the screen, typing away. It brings some normality into my life something to look forward to in many ways. Just off loading the days woes if possible.
I miss having the rush in my daily life, the hurrying and pressures of doing things at speed in order for me to everything done. Never having enough time in the day. Now here i am with time weighing so heavily on my shoulders. Its a burden this time i have. Maybe i should be enjoying the free time but I'm not. I don't know how Tim copes, i feel bored . Isn't that a strange thing to say at this time.
I look at the treasure box we have for Mikey and know that i have all the cards from the service to put into his remembrance book but i haven't opened it since we put all the cards etc in it. I will one day I'm sure. If i don't lift the lid then it hasn't happened. Is this denial, then if so that's where i am.
When you have children you expect them to outlive you. The balance of life has been taken out of this order for me and i cant handle that. Not yet, not yet.......
I was reading an article yesterday about CF and how there has been so much progress made in enabling longevity for the Cf sufferers, (oh and isn't that the most appropriate word!!!) and that now life expectancy is 30 years of age. Well Mikey sadly didn't get to that age. Would that have been long enough for us, i can say now yes i would be grateful for that but deep down i know that when that time came it wouldn't.
I have been looking at his photos and he looked so happy a few years ago. These are the images i want to have, but at the moment i am still stuck in the hospital mode, those last few hours and i so wish i can get past that and no matter how i try those images will just not go away. But maybe they will i hope so.
I cant even bear to look at the clothes i had on that day and doubt if i will ever wear them so i have thrust them to the back of the wardrobe because i cant bear to part with them either.
All Mikes medical stuff is still here and again we cant bear to discard them Its all part of having him near. I hope Claire will give us some reminder of him. We will see, we will see.
No story tonight I'm so cold. And so weary, not tired i wish i could sleep just bone weary. Old.
Oh well tomorrow is another day..............
Monday 27 September 2010
Day 31
We woke this morning to rain. But we had a purpose for today.
Tim got on the phone about the central heating and we should have someone out today thank goodness.
I went up to the banks and building society to try to sort those out before going to the solicitor this afternoon. That was a joke really anyway have to go to see someone at the bank next week!!!! cant get anything sorted today. Goodness what is the country coming to.
Arrived back home and no call about heating so Tim rang again and we were told someones coming today. So Tim said i better go to the solicitors by myself. Arranging a will and making sure you have all request or bequests arranged is not something i would advise anyone to do by themselves. Ever since Mikey died i have had to do all arrangements and that has been so hard. I wonder if Tim realises. Although i do think so because he has said he couldn't do the things needed to be done.
I hope i got it all right anyway she is going to send us a copy and then we will both have to sign. Tim has got to see the solicitor because in her words she has to make sure he wasn't made to sign with his arm pinned behind his back!! as if....
I called in to see Mark at Turners and paid Claire's bill. I hope Tim doesn't find out because he would be furious, but i cant let it go unpaid. That's so unfair to poor Mikey. The ashes are sorted and decisions have been made by me. So i will take full responsibility for any consequences that result.
When i got home Dr warrender had called in to see us both and luckily never discussed my appointment!!!
He was very fond of Mikey and asked what happened and how we were so i told him about Tim's headaches.
Dr W asked Tim about them and how he would describe them Tim said he didn't care if anything happened to him and didn't want a fuss. Dr W said now he knew he couldn't ignore it and neither should Tim. The thing is it may be nothing or it could be related to the hemorrhage he had two years ago. He asked if Tim had a headache today and Tim said no. Had he have said yes Dr W said he would have sent him immediately for a scan. He asked Tim to go up to the practice at 5.30pm.
Dr W was so understanding and said he couldn't imagine how we were feeling and just got us to talk about things. Tim said he thought that he was in denial because he cannot accept he will not see him again, he thinks the phone will go or Mikey will just walk through the door, and said no matter how long it will be he thinks Mikey is just asleep and not woken yet. It doesn't matter that we have had a funeral or anything its just like a bad dream.
Me i have just had so much to do, so many other things to worry about that it will hit me soon i think, i was asked how i felt and how can i possibly explain the emotion inside. Words will never be sufficient. We do wonder how other parents cope. Its not as if we are the only people this happens to. After all i expect everyday there are parents like us going through exactly the same thing.Where are they? Oh that damned CF.
Tim went up to the surgery and DrW is referring him urgently to neurologist and he should here by Friday re appointment. Tim's not happy because it means going back to Addenbrookes. Still lets hope it is nothing, but his BP was a bit high.
Well we still have no central heating!! they rang at 4pm to say they would be here first thing in the morning. So we went out for a drive again to get warm. Ended up going to Barr Hill Tesco for a look around. I bought some of those exercise trainers that are supposed to help exercise, tone and assist with slimming and posture. Load of rubbish really but they have made me 2 inches taller and given me motion sickness!!!
Tim said Mikey would laugh if he could see me and that he would look at his dad roll his eyes, pinch his lips together in a half smile and shake his head. Quite right i can just see that look now. Neither of them would agree that they were good!!
Anyway I'm sitting here yet again in the cold so on that cheerful note i will close.
Tomorrow is another day.......................
The group trudged to the barn and Andrew opened the door with a huge sigh of relief. They all followed him into the gloomy building, suddenly aware that they were not alone.
How on earth had they missed the glow of the lantern and the aroma of cooking. That more than anything raised there awareness to the barns other occupants.
A giant of a man turned on their entrance and moved swiftly forward to greet them, followed swiftly by a slender young woman and two children and a scruffy dog wagging his tail.
Joshua was the local vet and one of the people Andrew and Jane had befriended many years ago, he was also made aware of the potential future events and agreed to work with them should they ever come to pass. Joshua was always one for contingency plans and took a lead with organising theirs.
Jennie his partner was a pharmacist in the local chemist and would have huge part to play in assisting with managing their medicinal supplies. The children were unknown to Andrews family but looked so anxious that they were introduced to the group as Melody and Martin
Tim got on the phone about the central heating and we should have someone out today thank goodness.
I went up to the banks and building society to try to sort those out before going to the solicitor this afternoon. That was a joke really anyway have to go to see someone at the bank next week!!!! cant get anything sorted today. Goodness what is the country coming to.
Arrived back home and no call about heating so Tim rang again and we were told someones coming today. So Tim said i better go to the solicitors by myself. Arranging a will and making sure you have all request or bequests arranged is not something i would advise anyone to do by themselves. Ever since Mikey died i have had to do all arrangements and that has been so hard. I wonder if Tim realises. Although i do think so because he has said he couldn't do the things needed to be done.
I hope i got it all right anyway she is going to send us a copy and then we will both have to sign. Tim has got to see the solicitor because in her words she has to make sure he wasn't made to sign with his arm pinned behind his back!! as if....
I called in to see Mark at Turners and paid Claire's bill. I hope Tim doesn't find out because he would be furious, but i cant let it go unpaid. That's so unfair to poor Mikey. The ashes are sorted and decisions have been made by me. So i will take full responsibility for any consequences that result.
When i got home Dr warrender had called in to see us both and luckily never discussed my appointment!!!
He was very fond of Mikey and asked what happened and how we were so i told him about Tim's headaches.
Dr W asked Tim about them and how he would describe them Tim said he didn't care if anything happened to him and didn't want a fuss. Dr W said now he knew he couldn't ignore it and neither should Tim. The thing is it may be nothing or it could be related to the hemorrhage he had two years ago. He asked if Tim had a headache today and Tim said no. Had he have said yes Dr W said he would have sent him immediately for a scan. He asked Tim to go up to the practice at 5.30pm.
Dr W was so understanding and said he couldn't imagine how we were feeling and just got us to talk about things. Tim said he thought that he was in denial because he cannot accept he will not see him again, he thinks the phone will go or Mikey will just walk through the door, and said no matter how long it will be he thinks Mikey is just asleep and not woken yet. It doesn't matter that we have had a funeral or anything its just like a bad dream.
Me i have just had so much to do, so many other things to worry about that it will hit me soon i think, i was asked how i felt and how can i possibly explain the emotion inside. Words will never be sufficient. We do wonder how other parents cope. Its not as if we are the only people this happens to. After all i expect everyday there are parents like us going through exactly the same thing.Where are they? Oh that damned CF.
Tim went up to the surgery and DrW is referring him urgently to neurologist and he should here by Friday re appointment. Tim's not happy because it means going back to Addenbrookes. Still lets hope it is nothing, but his BP was a bit high.
Well we still have no central heating!! they rang at 4pm to say they would be here first thing in the morning. So we went out for a drive again to get warm. Ended up going to Barr Hill Tesco for a look around. I bought some of those exercise trainers that are supposed to help exercise, tone and assist with slimming and posture. Load of rubbish really but they have made me 2 inches taller and given me motion sickness!!!
Tim said Mikey would laugh if he could see me and that he would look at his dad roll his eyes, pinch his lips together in a half smile and shake his head. Quite right i can just see that look now. Neither of them would agree that they were good!!
Anyway I'm sitting here yet again in the cold so on that cheerful note i will close.
Tomorrow is another day.......................
The group trudged to the barn and Andrew opened the door with a huge sigh of relief. They all followed him into the gloomy building, suddenly aware that they were not alone.
How on earth had they missed the glow of the lantern and the aroma of cooking. That more than anything raised there awareness to the barns other occupants.
A giant of a man turned on their entrance and moved swiftly forward to greet them, followed swiftly by a slender young woman and two children and a scruffy dog wagging his tail.
Joshua was the local vet and one of the people Andrew and Jane had befriended many years ago, he was also made aware of the potential future events and agreed to work with them should they ever come to pass. Joshua was always one for contingency plans and took a lead with organising theirs.
Jennie his partner was a pharmacist in the local chemist and would have huge part to play in assisting with managing their medicinal supplies. The children were unknown to Andrews family but looked so anxious that they were introduced to the group as Melody and Martin
Sunday 26 September 2010
Day 30
Its been sooooooo cold today. Wet and miserable.
I got up and made Tim a cup of tea this morning and i don't think he knew what hit him!! Well i surprised myself.
Yesterday i felt practically suicidal!! and could see no way forward for Tim and me today i feel differently. I just cant let all of our past be for nothing. So i best do what I'm best at and start fighting for me and mine. There is still a part though that just will not progress. I think that is because i am not only grieving for Mikey but for the loss of Jen and Ash in our lives. Whilst i have said i don't care that we have no contact i really have been dishonest with myself. However i still feel that they have badly let us down. There its said!!!
Having come to terms with that i may now be able to be a bit more positive. At the end of the day they do still exist in the world and are only missing in our lives not lost as Mikey is.
Claire has blocked me from Facebook, that again is another puzzle in itself, what i can possibly have done now is another mystery. Is it worth finding out why, do i ask the question of her? probably not. Why risk more hurt. I have tried phoning her today and had no response although i did leave voice mail message asking her if she was OK. I also saw her on line tonight through live messenger and sent instant message saying Hi but again no response. There are only so many times i will try. If this does continue then i can only assume she does not wish to know what has happened with Mikes ashes and as i am the legal owner of them she does need to contact me. I have instructed Turners that they should be released only to me. This will stop just anyone being able to collect them and will ensure that we know what is happening, and perhaps ensure that Claire would visit us. Claire asked that i pay for her flowers and she would pay me when she collects the ashes. Having agreed i now have no idea when she will communicate with me. I have not as yet paid the bill as we haven't had ours still. I so want to bring Mike home.
I have tried to talk to Tim today but he just wants life to carry on as before. It cant though and that's the difficulty. Tom goes to the Dr's tomorrow and i hope he asks for some anti depressants, they worked well before. Strange that both Tom and Mike were on them together last year. Strange that they both got back together with their partners only for the same thing to happen to both of them again within months of each other.
I'm going to Dr's tomorrow got called up to make appointment for some tests, that's just what i need now. It will send Tim into a tizzy so i will keep that to myself until i know results.
Tim took me for MacDonalds again today!!! i think that has become his cure all. If things go wrong have a chicken legend!! well it doesn't work for me but makes him feel better. Still it may have been excuse to get warm. Our central heatings packed up so going for ride in the car warmed us up. We have been sitting with fleece blankets and i have had my dressing gown on over my clothes to get warm. Oh and burning candles to generate some warmth!!!
I still haven't heard from the cf trust or Papworth yet so i think i will have to start a parents support page. That's for the future though not just yet.
Must get mug of coffee to warm myself up i think!!!
That's better, so i have been thinking what can i do to make myself feel better. I have considered the face lift again only considered mind. How Mike laughed when i went for treatment before. I went for consultation for botox much to the boys and Tims disgust. But how they all laughed when i got turned down. Yes turned down. Lets be honest how many people do you know that gets turned down. I was told that i needed radical surgery!!! that i would need fillers to all the wrinkles then botox to stop the filler from moving and the success of that working was practically nil, therefore surgery was the only option. When i phoned Tim he said oh never mind go and get a new pair of shoes!!!
I felt worse when we returned from our holidays and visited Mikey in hospital one of the nurses asked if i was his grandmother!! he and Tim laughed until they cried. They tried to be serious when i was upset but just looked at each other and became almost hysterical, and then Mikey had a really bad coughing episode. Mikey said don't worry about it, its not as if you are dying is it. That didn't really help! Mikey had to have drain the next day because his lung had collapsed.
So i will send for instant face lift in a jar from America that i have seen on the internet. It may just do the trick i had some before and it was very good!! only lasts 6 hours though and then everything drops!! so do need to plan when to apply it!!
On that happy note im going to bed to get warm.
Tomorrow is another day.............
I got up and made Tim a cup of tea this morning and i don't think he knew what hit him!! Well i surprised myself.
Yesterday i felt practically suicidal!! and could see no way forward for Tim and me today i feel differently. I just cant let all of our past be for nothing. So i best do what I'm best at and start fighting for me and mine. There is still a part though that just will not progress. I think that is because i am not only grieving for Mikey but for the loss of Jen and Ash in our lives. Whilst i have said i don't care that we have no contact i really have been dishonest with myself. However i still feel that they have badly let us down. There its said!!!
Having come to terms with that i may now be able to be a bit more positive. At the end of the day they do still exist in the world and are only missing in our lives not lost as Mikey is.
Claire has blocked me from Facebook, that again is another puzzle in itself, what i can possibly have done now is another mystery. Is it worth finding out why, do i ask the question of her? probably not. Why risk more hurt. I have tried phoning her today and had no response although i did leave voice mail message asking her if she was OK. I also saw her on line tonight through live messenger and sent instant message saying Hi but again no response. There are only so many times i will try. If this does continue then i can only assume she does not wish to know what has happened with Mikes ashes and as i am the legal owner of them she does need to contact me. I have instructed Turners that they should be released only to me. This will stop just anyone being able to collect them and will ensure that we know what is happening, and perhaps ensure that Claire would visit us. Claire asked that i pay for her flowers and she would pay me when she collects the ashes. Having agreed i now have no idea when she will communicate with me. I have not as yet paid the bill as we haven't had ours still. I so want to bring Mike home.
I have tried to talk to Tim today but he just wants life to carry on as before. It cant though and that's the difficulty. Tom goes to the Dr's tomorrow and i hope he asks for some anti depressants, they worked well before. Strange that both Tom and Mike were on them together last year. Strange that they both got back together with their partners only for the same thing to happen to both of them again within months of each other.
I'm going to Dr's tomorrow got called up to make appointment for some tests, that's just what i need now. It will send Tim into a tizzy so i will keep that to myself until i know results.
Tim took me for MacDonalds again today!!! i think that has become his cure all. If things go wrong have a chicken legend!! well it doesn't work for me but makes him feel better. Still it may have been excuse to get warm. Our central heatings packed up so going for ride in the car warmed us up. We have been sitting with fleece blankets and i have had my dressing gown on over my clothes to get warm. Oh and burning candles to generate some warmth!!!
I still haven't heard from the cf trust or Papworth yet so i think i will have to start a parents support page. That's for the future though not just yet.
Must get mug of coffee to warm myself up i think!!!
That's better, so i have been thinking what can i do to make myself feel better. I have considered the face lift again only considered mind. How Mike laughed when i went for treatment before. I went for consultation for botox much to the boys and Tims disgust. But how they all laughed when i got turned down. Yes turned down. Lets be honest how many people do you know that gets turned down. I was told that i needed radical surgery!!! that i would need fillers to all the wrinkles then botox to stop the filler from moving and the success of that working was practically nil, therefore surgery was the only option. When i phoned Tim he said oh never mind go and get a new pair of shoes!!!
I felt worse when we returned from our holidays and visited Mikey in hospital one of the nurses asked if i was his grandmother!! he and Tim laughed until they cried. They tried to be serious when i was upset but just looked at each other and became almost hysterical, and then Mikey had a really bad coughing episode. Mikey said don't worry about it, its not as if you are dying is it. That didn't really help! Mikey had to have drain the next day because his lung had collapsed.
So i will send for instant face lift in a jar from America that i have seen on the internet. It may just do the trick i had some before and it was very good!! only lasts 6 hours though and then everything drops!! so do need to plan when to apply it!!
On that happy note im going to bed to get warm.
Tomorrow is another day.............
Saturday 25 September 2010
Day 28 & 29
I missed yesterday so writing both today. Im sitting here tonight and feeling as though there are two worlds mine and the real one.
Who wants to be in mine?
Its a dark place where there is no tomorrow, just now. I lack purpose and i dont want to be here. There is nowhere for me to go. I want to curl up and just sleep.
Tims in bed, today we have hardly spoken. Nothing to say and i can only think this will be how things are going to be for the rest of our lives. Is that what i want?
I have spent 24hrs off this place in a world of colour, of family, of communication. I have been embraced in warmth of others and now returned to this barren place devoid of love, thats not say to Tim doesnt love me but its a worldy love thats missing. Our children are missing, we have no family and no friends that visit to make our house a home anymore. Its a sterile place. Its clean and tidy, nothing out of place.
Tim is a perfectionist i suppose, and likes order i enjoy a bit of chaos. Does it matter if clothes are not put away immediately, does it matter if a cups not washed up? but i expect because tim is home all the time thats what he does.
Tim made a comment today that made me question myself and it was such a small thing but has had a profound effect on me today. Possibly something i would just have ignored before but today i cant.
When the children were small and Tim worked i did the housework, cooked, cared for the boys, helped in school, worked as well and studied did an open uni course and ran the home. No problem. I was multi tasking. Today Tim commented that he did all the housework etc and that i was incapable of doing anything other that work. When i said i used to do it and there was no problem he became quiet and i said, but you said that's what you would do if you didn't go to work anymore. I also said that i could do it still if need be. Tim then went to bed.
I didn't say anything out of order but just a fact so should i live without saying whats on my mind.
Obviously yes, it appears that i always say the wrong thing. But if i say nothing I'm living a lie and i don't want to do that. I am not me but another person moulded into what others want.
Has losing Mikey made such a difference to us. We haven't spent time in the house. Every day we have tried to do something and suddenly we have nothing to say.
Tim has seen no one and has had no conversation. Nothing to add to the day. I think he enjoys there just being the two of us, we go everywhere together but i have no space. I have no time for me.
Either i work and come home and then we go for a walk or something. That's how its always been. I don't think that's enough for me now. I would rather be alone than alone in company.
Tim said that we could have done something this afternoon when i came home from York, instead we have just remained at home. When i asked him what he wanted to do he said he didn't want to do anything specific but i could have said lets go out.
I'm tired, just tired of life and of trying to think of places to go and things to do. Why cant Tim say to me right we are going to ........ today. How wonderful that would be. After all he has the time.
I can honestly say i don't think we will be sharing a home in our old age if something doesn't give.
I dread tomorrow!
Maybe we are both depressed? possible i expect.
I wish i had not had this time off work really, but saying that would i have been any better at work. I don't know.
At the moment it would appear that i am brain dead.
I look in the mirror and what do i see
A face, a woman, but it isn't me.
I want Mikey back, i miss him in my world, its just so unfair.
They say life is one big tapestry. If our lives could be described as that, then ours will never be finished because the thread that was holding it all together has broken.
I hope when i wake tomorrow the sun is shining in this world, or at least a glimmer of daylight.
I do wonder what will become of us.
I phoned Tom today and he is still unhappy and talking about leaving his job and doing something else. Perhaps he should. Tom seems so naive about the world and the employment situation. Sadly it will not be until he no longer has his job that he will realise what he has. Still that's what life is about, making your way and learning from mistakes. Saying that if you don't take any risks in life nothing would ever change.
Maybe that's what Tim and i should do take some risks! But perhaps not i have no energy to redirect our lives.
This blog tonight hasn't helped and my heart is heavy. I feel as though i have been swept up in a Tsunami.
No story either.
Who wants to be in mine?
Its a dark place where there is no tomorrow, just now. I lack purpose and i dont want to be here. There is nowhere for me to go. I want to curl up and just sleep.
Tims in bed, today we have hardly spoken. Nothing to say and i can only think this will be how things are going to be for the rest of our lives. Is that what i want?
I have spent 24hrs off this place in a world of colour, of family, of communication. I have been embraced in warmth of others and now returned to this barren place devoid of love, thats not say to Tim doesnt love me but its a worldy love thats missing. Our children are missing, we have no family and no friends that visit to make our house a home anymore. Its a sterile place. Its clean and tidy, nothing out of place.
Tim is a perfectionist i suppose, and likes order i enjoy a bit of chaos. Does it matter if clothes are not put away immediately, does it matter if a cups not washed up? but i expect because tim is home all the time thats what he does.
Tim made a comment today that made me question myself and it was such a small thing but has had a profound effect on me today. Possibly something i would just have ignored before but today i cant.
When the children were small and Tim worked i did the housework, cooked, cared for the boys, helped in school, worked as well and studied did an open uni course and ran the home. No problem. I was multi tasking. Today Tim commented that he did all the housework etc and that i was incapable of doing anything other that work. When i said i used to do it and there was no problem he became quiet and i said, but you said that's what you would do if you didn't go to work anymore. I also said that i could do it still if need be. Tim then went to bed.
I didn't say anything out of order but just a fact so should i live without saying whats on my mind.
Obviously yes, it appears that i always say the wrong thing. But if i say nothing I'm living a lie and i don't want to do that. I am not me but another person moulded into what others want.
Has losing Mikey made such a difference to us. We haven't spent time in the house. Every day we have tried to do something and suddenly we have nothing to say.
Tim has seen no one and has had no conversation. Nothing to add to the day. I think he enjoys there just being the two of us, we go everywhere together but i have no space. I have no time for me.
Either i work and come home and then we go for a walk or something. That's how its always been. I don't think that's enough for me now. I would rather be alone than alone in company.
Tim said that we could have done something this afternoon when i came home from York, instead we have just remained at home. When i asked him what he wanted to do he said he didn't want to do anything specific but i could have said lets go out.
I'm tired, just tired of life and of trying to think of places to go and things to do. Why cant Tim say to me right we are going to ........ today. How wonderful that would be. After all he has the time.
I can honestly say i don't think we will be sharing a home in our old age if something doesn't give.
I dread tomorrow!
Maybe we are both depressed? possible i expect.
I wish i had not had this time off work really, but saying that would i have been any better at work. I don't know.
At the moment it would appear that i am brain dead.
I look in the mirror and what do i see
A face, a woman, but it isn't me.
I want Mikey back, i miss him in my world, its just so unfair.
They say life is one big tapestry. If our lives could be described as that, then ours will never be finished because the thread that was holding it all together has broken.
I hope when i wake tomorrow the sun is shining in this world, or at least a glimmer of daylight.
I do wonder what will become of us.
I phoned Tom today and he is still unhappy and talking about leaving his job and doing something else. Perhaps he should. Tom seems so naive about the world and the employment situation. Sadly it will not be until he no longer has his job that he will realise what he has. Still that's what life is about, making your way and learning from mistakes. Saying that if you don't take any risks in life nothing would ever change.
Maybe that's what Tim and i should do take some risks! But perhaps not i have no energy to redirect our lives.
This blog tonight hasn't helped and my heart is heavy. I feel as though i have been swept up in a Tsunami.
No story either.
Thursday 23 September 2010
Day 27
Rain,rain.rain today. Thought we was going to be house bound today. We decided to go shopping!!! First time for me for weeks. Mikey would find that almost impossible to believe. His mum not buying a thing for that long nah impossible.
The truth is i just haven't been able to drum up the enthusiasm. Even today it feels like a chore. But i do need some proper running gear. Cant keep doing this walking in jeans or the shorts i have.
We head off to Kings Lynn with the hope of perhaps having a good walk from Hunny to Heacham.
However the weather today was not at all promising.
Managed to get some Capri running Capri pants and i have to say they are black moisture something so very good in black and vibrant pink. Mikey would cringe!!! they looked pretty fab and a great fit size 10. Until i got home and the label inside said 14. All i can say is they must be cut very very small. I also got some running tops so all kitted out now.
Legs go faster cos of the shiny fabric legs don't stick together now so no chaffing. Ha.
Well it was pouring of rain and Tim said we will have McDonald's again!! but we went wrong in the traffic and headed of to sunny hunny and it was!! so had our lunch and came home. Tim cleaned the car again. No surprise there and i went to the library.
Went for a walk and we spoke about Mikey. I realised that we have had very little verbal conversation with anyone about Mikey i have spoken to Joni but other than that no one else. We have been on holiday a week now and have only spoken to each other Tom once and shop assistants. That is so sad.
Realised that although i go to work and talk to people there. We only communicated with Mikey and Tom.
We have no friends who we socialise with. There is only us!!!!
It makes me wonder what will happen if one of us is left alone.
Its a wonder that we haven't become fed up with each other before now. Maybe that's what Mike said when he used to say mum you don't listen, when i join in a conversation only to have found out that Tim and mike had had that same conversation 5 minutes earlier. I shut things out and live in my world. It must have been more interesting. They always talked about sport, cars or programmes they were both interested in i must have been feeling left out.
What do Tim and I have in common. Well nothing really. Oh my goodness!!! I go to work, come home go for a walk, used to read because i didn't like the same TV programmes. In fact don't watch TV much at all.
Tims main interest is cars. I know that once this car is 12 months old i will endure another 12 months of what car shall we have next year and he will visit garage after garage and put them up on the Internet to look at and expect me to show some interest. Well i don't care as long as it gets me from a to b and starts i don't think about them at all.
I think we are in for a long hard winter. I try to do things but am too knackered when i come home from work. Still will try to be a bit more positive!!! Conversation well if Tim hasn't seen anyone he will have nothing to tell me, he does need to get out when I'm working.
Still haven't had the bill from Mark so i will go up Monday again. He said on Friday that he wasn't worried he knows we will pay him. But i also need to sort the ashes out. What happens will depend on Claire now.
Thinking of Mikey tonight made me sad but Tim keeps saying that he made the decisions and we cant change anything. No amount of worrying now will bring him back. Tim said he wished it would but he knows it wont and we have to accept it. Tim says he thinks about Mikey all the time and misses him so much especially his visits just the two of them.
Tim also mentioned the visits to the specialists at Edith Cavell and Addenbrookes and how Mike thought Claire was going with him and then changed her mind.
The appointment at Addenbrookes on the 6th August was the most disappointing for him we know. Claire initially was going, we offered to go but Mike said only if Claire cant go. Then mike rang us to say she couldn't go and when we visited that evening he said Claire had said it was out of her way as she was camping out at Peterborough that weekend.
We met Mike at the hospital and you could tell he was hurt that she wasn't there but he said that she is only a friend now and his carer so she didn't have to come. Angie the CF nurse was with us too.
It was awful for him. The Consultant was really very good and explained in detail Mikes problem and his problem regarding Mikey's health.
Mike had 3 kidney stones one they felt that they could get to and the other was rather high up in the kidney and they may be able to get that, they though yes quite possibly. The third stone the biggest one would prove to be the hardest and the equipment they had would not be able to get at. The result being that Mike would possibly need another operation. Mike asked if it could be done by giving him spinal anaesthetic and the surgeon said no. It would mean general anaesthetic. The stone was so high up that if the gave spinal they would have to paralyse his chest to get at it and that would not be possible he would need to lay on his tummy to have the stone removed surgically. The consultant said he was worried about giving him general because there was a high risk that Mike would not make it through the surgery. He was also worried that he had his lung collapse. Mike then said that Papworth thought now was the best time because he was at his well est.
Mike also said he had to have this operation because otherwise he could not be put on the transplant list at Newcastle they said this has to be done before that can happen. Mike said the transplant was his only option for him to be well.
The Consultant said he would have to speak to someone at Papworth and both Mike and Angie said Helen his consultant would be happy to speak to him even though it was her day off because it was her daughters birthday party.
The Urologist went to phone her. We sat in the room trying hard to hear what was being said but couldn't really hear anything. Mike sat in his wheelchair looking so very very sad and desperate for positive outcome.
When he came back he told Mikey that he had spoken to her and that they felt that the risk was worth the try as Mike was probably at the best he will ever be. The consultant said he would also try to speak to his anaesthetist to discuss the case with him.
We waited again. He came back and said that he would do the operation but had to be sure Mike understood fully what may happen and would he like to go and think about it first. Mike said he had no choice. Mike said I'm going to die if i don't have the transplant and i cant have the transplant if i don't have this operation i will die either way, but it may be OK.
The consultant said we can do the op next Thursday. We will have you in the morning of the op. He asked if a nurse from Papworth come come with him as the nurses at Addenbrookes not familiar with his meds and treatment etc. Angie said yes that was fine someone could come and stay until he goes into surgery.
When Mikey was given the form to sign for agreement his hands were shaking and both Tim and i would have given anything to take it from him. We thought the risk was too high but Mike had made his mind up.
We were asked if we had any questions and Mike just looked at us as if to say no ! So we both said no we didn't have any questions. I was trying so hard not to cry but Mike looked at me as i was wiping my eyes as if to say don't you dare.
When we came out of the room the transport was waiting for him. So Mikey said i will see you later and was pushed away to return to Papworth. Hoping that he would be able to go home on Tuesday but now doubtful because he thought hat they would want to keep him in until Thursday. Tim and i were both upset and very worried because we thought the risk was to high for him but had to respect his choices. Coming home all we could talk about was how he looked in that chair, so sad and looked as though he may cry but was holding his emotions in and yet so brave at the same time. He looked as though the world around him had fallen. We thought that it was in some way because Claire wasn't with him. What a thing to come to terms with that he knows that there is a very high risk that he would die next Thursday. How many people have to cope with that. At 25 he had made this huge huge decision. God only knows how he must have been feeling.
When we got home Tim said I'm going back to Papworth i asked him if i should come too and he said no he wanted to see Mikey on his own.
Tim returned later and said the first thing Mike said is what are you doing here. Tim said he told him he was worried about him being on his own after having that news. Mike said he was fine and that he didn't have a choice to make. There was no option other than to have the operation even though they told him the risk. Tim asked him if he had told Claire and he said yes. Tim asked if she was coming up to see him and Mike said no shes camping out at the festival with her friend Claire at Peterborough. We thought once she knew about the op she would spend every day with him. Mike hoped to see her on Tuesday he thought.
I had a phone call from him on Saturday the 7th and he asked if dad come and fetch him home for the afternoon could he come at about 1130. Tim said of course he could but it may be a bit after that cos he was just finishing the cat. Mikey said that's fine.
I cant write anymore tonight and i cant do any to my story either. I will continue the next few days later and will write up what Helen said at the meeting after Mikey passed away. But that for another night no more today.
The truth is i just haven't been able to drum up the enthusiasm. Even today it feels like a chore. But i do need some proper running gear. Cant keep doing this walking in jeans or the shorts i have.
We head off to Kings Lynn with the hope of perhaps having a good walk from Hunny to Heacham.
However the weather today was not at all promising.
Managed to get some Capri running Capri pants and i have to say they are black moisture something so very good in black and vibrant pink. Mikey would cringe!!! they looked pretty fab and a great fit size 10. Until i got home and the label inside said 14. All i can say is they must be cut very very small. I also got some running tops so all kitted out now.
Legs go faster cos of the shiny fabric legs don't stick together now so no chaffing. Ha.
Well it was pouring of rain and Tim said we will have McDonald's again!! but we went wrong in the traffic and headed of to sunny hunny and it was!! so had our lunch and came home. Tim cleaned the car again. No surprise there and i went to the library.
Went for a walk and we spoke about Mikey. I realised that we have had very little verbal conversation with anyone about Mikey i have spoken to Joni but other than that no one else. We have been on holiday a week now and have only spoken to each other Tom once and shop assistants. That is so sad.
Realised that although i go to work and talk to people there. We only communicated with Mikey and Tom.
We have no friends who we socialise with. There is only us!!!!
It makes me wonder what will happen if one of us is left alone.
Its a wonder that we haven't become fed up with each other before now. Maybe that's what Mike said when he used to say mum you don't listen, when i join in a conversation only to have found out that Tim and mike had had that same conversation 5 minutes earlier. I shut things out and live in my world. It must have been more interesting. They always talked about sport, cars or programmes they were both interested in i must have been feeling left out.
What do Tim and I have in common. Well nothing really. Oh my goodness!!! I go to work, come home go for a walk, used to read because i didn't like the same TV programmes. In fact don't watch TV much at all.
Tims main interest is cars. I know that once this car is 12 months old i will endure another 12 months of what car shall we have next year and he will visit garage after garage and put them up on the Internet to look at and expect me to show some interest. Well i don't care as long as it gets me from a to b and starts i don't think about them at all.
I think we are in for a long hard winter. I try to do things but am too knackered when i come home from work. Still will try to be a bit more positive!!! Conversation well if Tim hasn't seen anyone he will have nothing to tell me, he does need to get out when I'm working.
Still haven't had the bill from Mark so i will go up Monday again. He said on Friday that he wasn't worried he knows we will pay him. But i also need to sort the ashes out. What happens will depend on Claire now.
Thinking of Mikey tonight made me sad but Tim keeps saying that he made the decisions and we cant change anything. No amount of worrying now will bring him back. Tim said he wished it would but he knows it wont and we have to accept it. Tim says he thinks about Mikey all the time and misses him so much especially his visits just the two of them.
Tim also mentioned the visits to the specialists at Edith Cavell and Addenbrookes and how Mike thought Claire was going with him and then changed her mind.
The appointment at Addenbrookes on the 6th August was the most disappointing for him we know. Claire initially was going, we offered to go but Mike said only if Claire cant go. Then mike rang us to say she couldn't go and when we visited that evening he said Claire had said it was out of her way as she was camping out at Peterborough that weekend.
We met Mike at the hospital and you could tell he was hurt that she wasn't there but he said that she is only a friend now and his carer so she didn't have to come. Angie the CF nurse was with us too.
It was awful for him. The Consultant was really very good and explained in detail Mikes problem and his problem regarding Mikey's health.
Mike had 3 kidney stones one they felt that they could get to and the other was rather high up in the kidney and they may be able to get that, they though yes quite possibly. The third stone the biggest one would prove to be the hardest and the equipment they had would not be able to get at. The result being that Mike would possibly need another operation. Mike asked if it could be done by giving him spinal anaesthetic and the surgeon said no. It would mean general anaesthetic. The stone was so high up that if the gave spinal they would have to paralyse his chest to get at it and that would not be possible he would need to lay on his tummy to have the stone removed surgically. The consultant said he was worried about giving him general because there was a high risk that Mike would not make it through the surgery. He was also worried that he had his lung collapse. Mike then said that Papworth thought now was the best time because he was at his well est.
Mike also said he had to have this operation because otherwise he could not be put on the transplant list at Newcastle they said this has to be done before that can happen. Mike said the transplant was his only option for him to be well.
The Consultant said he would have to speak to someone at Papworth and both Mike and Angie said Helen his consultant would be happy to speak to him even though it was her day off because it was her daughters birthday party.
The Urologist went to phone her. We sat in the room trying hard to hear what was being said but couldn't really hear anything. Mike sat in his wheelchair looking so very very sad and desperate for positive outcome.
When he came back he told Mikey that he had spoken to her and that they felt that the risk was worth the try as Mike was probably at the best he will ever be. The consultant said he would also try to speak to his anaesthetist to discuss the case with him.
We waited again. He came back and said that he would do the operation but had to be sure Mike understood fully what may happen and would he like to go and think about it first. Mike said he had no choice. Mike said I'm going to die if i don't have the transplant and i cant have the transplant if i don't have this operation i will die either way, but it may be OK.
The consultant said we can do the op next Thursday. We will have you in the morning of the op. He asked if a nurse from Papworth come come with him as the nurses at Addenbrookes not familiar with his meds and treatment etc. Angie said yes that was fine someone could come and stay until he goes into surgery.
When Mikey was given the form to sign for agreement his hands were shaking and both Tim and i would have given anything to take it from him. We thought the risk was too high but Mike had made his mind up.
We were asked if we had any questions and Mike just looked at us as if to say no ! So we both said no we didn't have any questions. I was trying so hard not to cry but Mike looked at me as i was wiping my eyes as if to say don't you dare.
When we came out of the room the transport was waiting for him. So Mikey said i will see you later and was pushed away to return to Papworth. Hoping that he would be able to go home on Tuesday but now doubtful because he thought hat they would want to keep him in until Thursday. Tim and i were both upset and very worried because we thought the risk was to high for him but had to respect his choices. Coming home all we could talk about was how he looked in that chair, so sad and looked as though he may cry but was holding his emotions in and yet so brave at the same time. He looked as though the world around him had fallen. We thought that it was in some way because Claire wasn't with him. What a thing to come to terms with that he knows that there is a very high risk that he would die next Thursday. How many people have to cope with that. At 25 he had made this huge huge decision. God only knows how he must have been feeling.
When we got home Tim said I'm going back to Papworth i asked him if i should come too and he said no he wanted to see Mikey on his own.
Tim returned later and said the first thing Mike said is what are you doing here. Tim said he told him he was worried about him being on his own after having that news. Mike said he was fine and that he didn't have a choice to make. There was no option other than to have the operation even though they told him the risk. Tim asked him if he had told Claire and he said yes. Tim asked if she was coming up to see him and Mike said no shes camping out at the festival with her friend Claire at Peterborough. We thought once she knew about the op she would spend every day with him. Mike hoped to see her on Tuesday he thought.
I had a phone call from him on Saturday the 7th and he asked if dad come and fetch him home for the afternoon could he come at about 1130. Tim said of course he could but it may be a bit after that cos he was just finishing the cat. Mikey said that's fine.
I cant write anymore tonight and i cant do any to my story either. I will continue the next few days later and will write up what Helen said at the meeting after Mikey passed away. But that for another night no more today.
Wednesday 22 September 2010
Day 26
Well we awoke this morning to fog. We got up early so we could go to Yorkshire to visit Mother Shiptons cave. I hoped the weather was not a portent of a bad day.
We left March at 8am and had a good journey up to Yorkshire. By the time we arrived the sun was shining.
The scenery was incredible and we both felt so relaxed and at peace with the day. The walk to the cave was so peaceful and you could hear the quiet. That seems a strange thing to say but true. It was if we had stepped off the world and entered a place where anything was possible. We talked of why we had never ventured far from home and how we had always looked for an excuse. Tim more than me really. Its about making an effort.
A strange thing did happen whilst we was at the well and the cave and i still cant quite except it. I suppose I'm a bit of a sceptic but the feeling of warmth that i have had in my hand since placing it in the well to make a wish has not gone away and i felt embraced by a kindness that is hard to explain. Is it imagination or has something magical occurred. Well i do believe i am going to say yes to the latter. Call me mad, call me deranged,call me psychotic i don't care but i have a lovely feeling today. Is it Mike i don't know. I'm just glad its with me. I feel as though i am in a snug duvet and loved really loved. What better thing to think or imagine.
Mikey would have been proud of us and we would have had so much to tell him. That is the key i think. We had few changes in our lives to interest Mikey and as he couldn't go far these last few months, hearing about other peoples adventures and happenings must have bought the world to him. It also in a way was double edged because Mikey was then having to face his limitations. God that must have been so hard for him knowing that life was going on without him. How brave was he to endure all he had to put up with. Not just his physical deterioration and his daily pain but his emotional health and pain that bought him as well. It is no wonder he questioned whether he should give up. We selfishly said no of course not. How much unhappiness can a person live with before your mind starts falling apart. I don't know, i don't know.
Mikey asked for anti depressants and wished his head would stop, but it never did. We saw a different Mikey than Claire. That was evident on the day of his op when we saw them together. Mikey just showed her his cheerful positive self. Claire i don't think had seen him as we had I'm sure he put on a brave front for her. This i think was done so Claire didn't feel bad. Mikey would always put her first.How sad that she couldn't have managed to hang on in there for another couple of months we all knew that his time was limited. Mikey was there for Claire and never used any excuse it didn't matter that he was terrified that she may die when she had her transplant. Had she forgotten that he spent every day with her before and after the transplant. I hope she remembers now, but probably not and even if she does i don't think it would cause too much of a problem for her as she has got a good quality life and she should forget those times i think. I however cannot forget the last 18mths. What about his 'friends' Claire and Mitch they both knew what was happening but good old Mike he would go to Spalding and fetch Mitch to stay. Has Mitch got a conscience i wonder and Claire, she was well aware of what was going to happen to Claire and Mike on the return from holiday. Is that treachery, yes i think so. Poor, poor Mikey. God he deserved better than that. In sickness and in health. Does it mean anything now. The true meaning has been lost over the last few decades i think.
I am going to ask Claire for Mikeys belongings. The reason is that they had split up and she is young and will want another life. That's only to be expected. But we will always be his parents and i would rather they be here than in her parents loft and forgotten until such a time that they are disposed of. We have left things to Claire to do and we should have suggested it but very conscious not to offend and say the wrong thing. Its purely because we know that she has to move on, but we wont.
I feel positive tonight now i have made a decision, i feel as though Mikey is here in someway i cant explain but it began yesterday the lifting of something heavy and the feeling that it is OK to be negative but also to start to be strong now and Mother do something for you!!! do what you want.
Maddie has been a joy that has entered our lives. Mikey has left us with someone very special and we are grateful for that. I do wonder if she knows what she has taken on bless her. I'm not the most normal of people but hey Mikey told me never to change otherwise i wouldn't be his mum. So if i was good enough for him i will do. lol.
I cant believe that i feel this euphoric will it last.
Ah well tomorrow is another day............
The strain of the nights events were taking their toll on them all by the time they emerged out of the walk way into yet another thick area of undergrowth. They battled their way trough out into an open field, well beyond the 16 mile bank. Jane took time to look for any recognisable landmark in this strange light. The children leaning heavily on either side of her still hanging on and dragging her further down emotionally and physically. Trying hard not to take her worry out of the children she gently removed their hands. Crouching down as their Father had done earlier she told them that they had to cross this field and walk down the old drove and they would be there.
Mr Riley was now almost at the end of his endurance and suggested they leave him where he was and make tracks. All of the group refused to leave him. The children moved to either side of him and taking a hand each told him that they would help him.
Mr Rileys voice broke when he thanked them for their kindness and agreed to carry on.
Andrew took the lead after Jane had directed him which route to take.
God its so good that Jane has this worked out he thought to himself. If she knew what we had left behind she would just crumble. I don't know if i can face going back but i know we must.
Cold began to take a grip of them. They shivered and limbs became heavy with each gruelling step forward. Feet began to sink into the earth where earlier they were springing forward.
Not for much longer Jane chanted repeatedly to herself as she lurched along.
At last they came to the end of the drove and could see another copse to the right. In there said Jane the barn is in there.
Excitedly now and with a bit of a lift in spirits they moved into the wooded area. An outline of a building came into view and with great sighs they arrived at their first destination.
We left March at 8am and had a good journey up to Yorkshire. By the time we arrived the sun was shining.
The scenery was incredible and we both felt so relaxed and at peace with the day. The walk to the cave was so peaceful and you could hear the quiet. That seems a strange thing to say but true. It was if we had stepped off the world and entered a place where anything was possible. We talked of why we had never ventured far from home and how we had always looked for an excuse. Tim more than me really. Its about making an effort.
A strange thing did happen whilst we was at the well and the cave and i still cant quite except it. I suppose I'm a bit of a sceptic but the feeling of warmth that i have had in my hand since placing it in the well to make a wish has not gone away and i felt embraced by a kindness that is hard to explain. Is it imagination or has something magical occurred. Well i do believe i am going to say yes to the latter. Call me mad, call me deranged,call me psychotic i don't care but i have a lovely feeling today. Is it Mike i don't know. I'm just glad its with me. I feel as though i am in a snug duvet and loved really loved. What better thing to think or imagine.
Mikey would have been proud of us and we would have had so much to tell him. That is the key i think. We had few changes in our lives to interest Mikey and as he couldn't go far these last few months, hearing about other peoples adventures and happenings must have bought the world to him. It also in a way was double edged because Mikey was then having to face his limitations. God that must have been so hard for him knowing that life was going on without him. How brave was he to endure all he had to put up with. Not just his physical deterioration and his daily pain but his emotional health and pain that bought him as well. It is no wonder he questioned whether he should give up. We selfishly said no of course not. How much unhappiness can a person live with before your mind starts falling apart. I don't know, i don't know.
Mikey asked for anti depressants and wished his head would stop, but it never did. We saw a different Mikey than Claire. That was evident on the day of his op when we saw them together. Mikey just showed her his cheerful positive self. Claire i don't think had seen him as we had I'm sure he put on a brave front for her. This i think was done so Claire didn't feel bad. Mikey would always put her first.How sad that she couldn't have managed to hang on in there for another couple of months we all knew that his time was limited. Mikey was there for Claire and never used any excuse it didn't matter that he was terrified that she may die when she had her transplant. Had she forgotten that he spent every day with her before and after the transplant. I hope she remembers now, but probably not and even if she does i don't think it would cause too much of a problem for her as she has got a good quality life and she should forget those times i think. I however cannot forget the last 18mths. What about his 'friends' Claire and Mitch they both knew what was happening but good old Mike he would go to Spalding and fetch Mitch to stay. Has Mitch got a conscience i wonder and Claire, she was well aware of what was going to happen to Claire and Mike on the return from holiday. Is that treachery, yes i think so. Poor, poor Mikey. God he deserved better than that. In sickness and in health. Does it mean anything now. The true meaning has been lost over the last few decades i think.
I am going to ask Claire for Mikeys belongings. The reason is that they had split up and she is young and will want another life. That's only to be expected. But we will always be his parents and i would rather they be here than in her parents loft and forgotten until such a time that they are disposed of. We have left things to Claire to do and we should have suggested it but very conscious not to offend and say the wrong thing. Its purely because we know that she has to move on, but we wont.
I feel positive tonight now i have made a decision, i feel as though Mikey is here in someway i cant explain but it began yesterday the lifting of something heavy and the feeling that it is OK to be negative but also to start to be strong now and Mother do something for you!!! do what you want.
Maddie has been a joy that has entered our lives. Mikey has left us with someone very special and we are grateful for that. I do wonder if she knows what she has taken on bless her. I'm not the most normal of people but hey Mikey told me never to change otherwise i wouldn't be his mum. So if i was good enough for him i will do. lol.
I cant believe that i feel this euphoric will it last.
Ah well tomorrow is another day............
The strain of the nights events were taking their toll on them all by the time they emerged out of the walk way into yet another thick area of undergrowth. They battled their way trough out into an open field, well beyond the 16 mile bank. Jane took time to look for any recognisable landmark in this strange light. The children leaning heavily on either side of her still hanging on and dragging her further down emotionally and physically. Trying hard not to take her worry out of the children she gently removed their hands. Crouching down as their Father had done earlier she told them that they had to cross this field and walk down the old drove and they would be there.
Mr Riley was now almost at the end of his endurance and suggested they leave him where he was and make tracks. All of the group refused to leave him. The children moved to either side of him and taking a hand each told him that they would help him.
Mr Rileys voice broke when he thanked them for their kindness and agreed to carry on.
Andrew took the lead after Jane had directed him which route to take.
God its so good that Jane has this worked out he thought to himself. If she knew what we had left behind she would just crumble. I don't know if i can face going back but i know we must.
Cold began to take a grip of them. They shivered and limbs became heavy with each gruelling step forward. Feet began to sink into the earth where earlier they were springing forward.
Not for much longer Jane chanted repeatedly to herself as she lurched along.
At last they came to the end of the drove and could see another copse to the right. In there said Jane the barn is in there.
Excitedly now and with a bit of a lift in spirits they moved into the wooded area. An outline of a building came into view and with great sighs they arrived at their first destination.
Tuesday 21 September 2010
Day 25
Today the weather was really nice. Tim started off by cleaning his car. We decided to got to Southwold today. It would make a change and well we could do with that. My mood was iffy although not like yesterday.
When we got there about 2 and a half hours later, the sun was out and it was really warm. Sweat shirts off and enjoy the sun. I was able to take lots of photos but the camera with the sun out, was proving difficult to see what i was actually taking. I really need a camera like Mikey had. So i guess that's next on the list!!! That and a lap top.
We had lunch and i stopped at the shops and guess what yep i lost Tim!! he didn't take his phone with him.
We found each other 30 mins later walking along the front. We had a lovely walk and i was snapping away merrily. Saw the house that's falling into the sea. Well almost the chap is trying his hardest to save it.
Our mood was cheerful and that felt good. Tim decided that he needed to go to the loo before he went home, as you do. I remained sitting on the sea wall looking for yet another opportunity to snap something. When i tried to get a bird all i ended up with was sky!! oh well the trials of becoming the next Davidia Bailey!!
Southwold is as I'm sure you know the up market seaside resort where beach huts cost £80000 so what happened next was not what we would have though would occur here.
Tim returned and said Sue a strange thing happened in there. I was in the cubicle and i could hear grunting and groaning from the next stall when a turd came under the separating wall. It was at least 3 inches long. I shouted hey what the f....s going on but the grunting just carried on. I couldn't kick it back because it would have stuck to my shoe and i wasn't going to pick it up. I asked him what he did and he said well i just left it, but i cant figure it out. Tim was really puzzled. How did it happen a turd cant just come at you like that. Did he wipe his a... and it flicked off or did it break away when he stood. I mean you cant not know you have a turd there can you and surely you wouldn't wipe yourself with a turd hanging you would wait for it to drop wouldn't you? And it came through at speed. Well i was laughing so much that Tim laughed as well.
We said if Mikey was here and we told him he would be cracking up. It was the sort of thing that he would find so funny. Especially today cos Tuesdays was dad and Mike night. I wonder if he had anything to do with this???
I don't know concrete flying yesterday and poo today what will tomorrow bring.
This incident kept us in good cheer all day and I'm thinking of Mikey now with a smile not a tear but tomorrow is another day!!!
The air in the passage was stale and smelt damp, and yet the wall appeared very solid and not what you would expect in the fens. Andrew said as much to everyone. Mr Riley said that his family reckoned that these passage ways were a seam of a paricular substance that goes through out the country. There would be others just like this linking them all together, his family only used this section but there is another passage that leads south that they did not use.
Well this could be a good opportunity for the future and Anrew and Jane would need to chart this at some time.
The group continued to walk, but the children were now getting very tired and hungry. Jane called a halt. We all need to rest and have a drink. Her rucksack open and small bottles of juice were handed around to everyone. Mr Riley told Jane and Andrew that the passage would take them beyond the 16 foot stretch of bank and asked where they were heading then.
Jane told him that there was a copse close by and there was a small barn that they would sleep in overnight. They hoped that others would meet them there.
There was also transport waiting and enough diesel in the vehicle to get them to the next stage of there journey. Before they move on the group would have to go back to the town or whats left of it to try and get more supplies. They would decide what to look for when the group got togeteher. What should they prioritise etc. It would depend on the availabilty of products that had not been destroyed and or what any other survivors were taking or even keeping others from having.
The group would encounter changes in their society and in characters of the human race. Some they may not be prepared for both emotionally and physically.
When we got there about 2 and a half hours later, the sun was out and it was really warm. Sweat shirts off and enjoy the sun. I was able to take lots of photos but the camera with the sun out, was proving difficult to see what i was actually taking. I really need a camera like Mikey had. So i guess that's next on the list!!! That and a lap top.
We had lunch and i stopped at the shops and guess what yep i lost Tim!! he didn't take his phone with him.
We found each other 30 mins later walking along the front. We had a lovely walk and i was snapping away merrily. Saw the house that's falling into the sea. Well almost the chap is trying his hardest to save it.
Our mood was cheerful and that felt good. Tim decided that he needed to go to the loo before he went home, as you do. I remained sitting on the sea wall looking for yet another opportunity to snap something. When i tried to get a bird all i ended up with was sky!! oh well the trials of becoming the next Davidia Bailey!!
Southwold is as I'm sure you know the up market seaside resort where beach huts cost £80000 so what happened next was not what we would have though would occur here.
Tim returned and said Sue a strange thing happened in there. I was in the cubicle and i could hear grunting and groaning from the next stall when a turd came under the separating wall. It was at least 3 inches long. I shouted hey what the f....s going on but the grunting just carried on. I couldn't kick it back because it would have stuck to my shoe and i wasn't going to pick it up. I asked him what he did and he said well i just left it, but i cant figure it out. Tim was really puzzled. How did it happen a turd cant just come at you like that. Did he wipe his a... and it flicked off or did it break away when he stood. I mean you cant not know you have a turd there can you and surely you wouldn't wipe yourself with a turd hanging you would wait for it to drop wouldn't you? And it came through at speed. Well i was laughing so much that Tim laughed as well.
We said if Mikey was here and we told him he would be cracking up. It was the sort of thing that he would find so funny. Especially today cos Tuesdays was dad and Mike night. I wonder if he had anything to do with this???
I don't know concrete flying yesterday and poo today what will tomorrow bring.
This incident kept us in good cheer all day and I'm thinking of Mikey now with a smile not a tear but tomorrow is another day!!!
The air in the passage was stale and smelt damp, and yet the wall appeared very solid and not what you would expect in the fens. Andrew said as much to everyone. Mr Riley said that his family reckoned that these passage ways were a seam of a paricular substance that goes through out the country. There would be others just like this linking them all together, his family only used this section but there is another passage that leads south that they did not use.
Well this could be a good opportunity for the future and Anrew and Jane would need to chart this at some time.
The group continued to walk, but the children were now getting very tired and hungry. Jane called a halt. We all need to rest and have a drink. Her rucksack open and small bottles of juice were handed around to everyone. Mr Riley told Jane and Andrew that the passage would take them beyond the 16 foot stretch of bank and asked where they were heading then.
Jane told him that there was a copse close by and there was a small barn that they would sleep in overnight. They hoped that others would meet them there.
There was also transport waiting and enough diesel in the vehicle to get them to the next stage of there journey. Before they move on the group would have to go back to the town or whats left of it to try and get more supplies. They would decide what to look for when the group got togeteher. What should they prioritise etc. It would depend on the availabilty of products that had not been destroyed and or what any other survivors were taking or even keeping others from having.
The group would encounter changes in their society and in characters of the human race. Some they may not be prepared for both emotionally and physically.
Monday 20 September 2010
Day 24
Another good start weather wise. Not always a good portent for me emotionally i have discovered.
Tim thought it would be a good idea if we go and see a solicitor about our will and then go to the bank to discuss moving some money about and to take out some Isa's. Tim really wants to get things sorted so its easier for Tom should anything happen to us. May as well get everything done now.
We go to the solicitors only to discover that we will have to make appointment, that was fine but we cant get in until next Monday. So we did that.
Next stop the bank and same thing really cant just do things without having to see a financial advisor. That's fine if you want to invest but we don't. Walking along the road i could feel myself wanting to cry, for no reason. Holding it in is a problem but deep breathing helped some. By the time we went into a building society and have to get the required forms/ leaflets to then discover you have to queue up to ask for them over the counter we were a little fed up to say the least. We decided to come home. I stopped at HSBC to try there whilst Tim went on to make the coffee. Well surprise surprise. We couldn't open account in the March Branch its only holding bank and we would have to go to Wisbech or Peterborough or do it on line!!! Get outside the bank and start crying. I dash across the road to walk down Bugs Alley no one about round there. I don't know why I'm crying. By the time i get home I'm feeling rather low in mood. Tell Tim about the Bank and because i feel like I'm going to cry again go and sit in the garden at the table we have on the patio. The washing was on the line. Tim had pegged it out.
Crying to myself and trying to drink coffee doesn't work its all to do with the swallowing. Anyway suddenly i m splattered with something wet. Next door are having some building work done and the tipper truck had just dumped wet sandy substance in their garden. I wipe my chest and I'm covered my jeans the table and seats. So i stand up on the seats and shout at the bloke driving the vehicle. This is a 6 foot fence mind you.OK he says i will drop the stuff further away from the fence. I have to wipe myself and garden furniture down and then discover that the washing is covered as well.
We have decided to go back to Sherringham for late lunch.
Lovely day a bit windy but we go to the Crown for our lunch and buy some nature books so i had try to identify plants etc that i take pictures of.
We watch the steam train on the station and that did make me feel some what better its like being in a time warp. It stood still for a while.
We then go on to Cromer and have walk into town didn't do anything just walk. It rained and we got wet going back to the car. It was only a shower though.
When we got home we checked the phone and Tom had rung us earlier. It was his first day back after 2 weeks. Tim must have been on the phone for at least 45 mins. Tom is very unhappy where he is working, and wants to leave the railway. He thinks he can just find employment as easily as winking. Well i suppose he will have to learn the hard way. No one wants to be at work but if you want Independence and the good things in life sadly that's the price you pay. I just wish that Tom would realise that he is responsible for how he is. Lots of people he work with have asked him out but he doesn't go. He cant invite anyone home because of the dog. Whats going to happen to his house the dog etc if he has now work? i have to say that Tom has never been happy. He didn't like the factory his first job. Then he constantly complained about the warehouse he worked in. Tim got him a job on the railway and he trained as ground staff good money still not right. Train driver still not right. I really think Tom is incapable of finding something he likes. I do know that he really should be thanking his lucky stars that he is fit and healthy enough to be able to work. I still don't think that would make a difference.
Both of us were feeling quite low in mood and although it takes your mind of other things its just so very waring.
We decided to watch a film tonight but both of us are a bit down. Tim has gone to bed and here i sit again. Still haven't managed to contact Claire.
Wondering should i go to the GP but i don't suppose he can do anything. Its just so strange that as soon as get up I'm wanting bed time to come as quick as possible.
I think its a mistake for me to go with Jen on Friday especially how i am at the moment. Who wants to put up with that when they are supposed to be celebrating their anniversary.
I will think about that tomorrow, after all it is another day.
Mr Riley took the lead and suggested that we use the torches to prevent us tripping up over tree roots, we cannot afford an injury as we had no medical back up yet. Put your hands round the top of the torch that way the beam will be less likely to be seen from a distance.
As we stumbled and crept through the trees heading towards the 16 foot, Mr Riley stopped in front of a big Oak tree. Just to the side was an old wall crumbled to the point of being almost unrecognisable.It was surrounded by a very thick bramble bush. Mr Riley eased his way into the brambles and advised the rest of the group to follow him. Clothing was snagged, the children were complaining and Andrew was at the point of refusal when he heard the children say oh its just like the lion the witch and the wardrobe,curiosity aroused and the thought of being out in this field alone prompted him to enter the bush. He found him self with his family in an underground, if that was the right term passage.
The Monks walk way.
Tim thought it would be a good idea if we go and see a solicitor about our will and then go to the bank to discuss moving some money about and to take out some Isa's. Tim really wants to get things sorted so its easier for Tom should anything happen to us. May as well get everything done now.
We go to the solicitors only to discover that we will have to make appointment, that was fine but we cant get in until next Monday. So we did that.
Next stop the bank and same thing really cant just do things without having to see a financial advisor. That's fine if you want to invest but we don't. Walking along the road i could feel myself wanting to cry, for no reason. Holding it in is a problem but deep breathing helped some. By the time we went into a building society and have to get the required forms/ leaflets to then discover you have to queue up to ask for them over the counter we were a little fed up to say the least. We decided to come home. I stopped at HSBC to try there whilst Tim went on to make the coffee. Well surprise surprise. We couldn't open account in the March Branch its only holding bank and we would have to go to Wisbech or Peterborough or do it on line!!! Get outside the bank and start crying. I dash across the road to walk down Bugs Alley no one about round there. I don't know why I'm crying. By the time i get home I'm feeling rather low in mood. Tell Tim about the Bank and because i feel like I'm going to cry again go and sit in the garden at the table we have on the patio. The washing was on the line. Tim had pegged it out.
Crying to myself and trying to drink coffee doesn't work its all to do with the swallowing. Anyway suddenly i m splattered with something wet. Next door are having some building work done and the tipper truck had just dumped wet sandy substance in their garden. I wipe my chest and I'm covered my jeans the table and seats. So i stand up on the seats and shout at the bloke driving the vehicle. This is a 6 foot fence mind you.OK he says i will drop the stuff further away from the fence. I have to wipe myself and garden furniture down and then discover that the washing is covered as well.
We have decided to go back to Sherringham for late lunch.
Lovely day a bit windy but we go to the Crown for our lunch and buy some nature books so i had try to identify plants etc that i take pictures of.
We watch the steam train on the station and that did make me feel some what better its like being in a time warp. It stood still for a while.
We then go on to Cromer and have walk into town didn't do anything just walk. It rained and we got wet going back to the car. It was only a shower though.
When we got home we checked the phone and Tom had rung us earlier. It was his first day back after 2 weeks. Tim must have been on the phone for at least 45 mins. Tom is very unhappy where he is working, and wants to leave the railway. He thinks he can just find employment as easily as winking. Well i suppose he will have to learn the hard way. No one wants to be at work but if you want Independence and the good things in life sadly that's the price you pay. I just wish that Tom would realise that he is responsible for how he is. Lots of people he work with have asked him out but he doesn't go. He cant invite anyone home because of the dog. Whats going to happen to his house the dog etc if he has now work? i have to say that Tom has never been happy. He didn't like the factory his first job. Then he constantly complained about the warehouse he worked in. Tim got him a job on the railway and he trained as ground staff good money still not right. Train driver still not right. I really think Tom is incapable of finding something he likes. I do know that he really should be thanking his lucky stars that he is fit and healthy enough to be able to work. I still don't think that would make a difference.
Both of us were feeling quite low in mood and although it takes your mind of other things its just so very waring.
We decided to watch a film tonight but both of us are a bit down. Tim has gone to bed and here i sit again. Still haven't managed to contact Claire.
Wondering should i go to the GP but i don't suppose he can do anything. Its just so strange that as soon as get up I'm wanting bed time to come as quick as possible.
I think its a mistake for me to go with Jen on Friday especially how i am at the moment. Who wants to put up with that when they are supposed to be celebrating their anniversary.
I will think about that tomorrow, after all it is another day.
Mr Riley took the lead and suggested that we use the torches to prevent us tripping up over tree roots, we cannot afford an injury as we had no medical back up yet. Put your hands round the top of the torch that way the beam will be less likely to be seen from a distance.
As we stumbled and crept through the trees heading towards the 16 foot, Mr Riley stopped in front of a big Oak tree. Just to the side was an old wall crumbled to the point of being almost unrecognisable.It was surrounded by a very thick bramble bush. Mr Riley eased his way into the brambles and advised the rest of the group to follow him. Clothing was snagged, the children were complaining and Andrew was at the point of refusal when he heard the children say oh its just like the lion the witch and the wardrobe,curiosity aroused and the thought of being out in this field alone prompted him to enter the bush. He found him self with his family in an underground, if that was the right term passage.
The Monks walk way.
Sunday 19 September 2010
DAY 23 Continued
My wretched computer has been playing up and the result has been that my previous blog was not checked and seemed lost in the ether and to be honest i have wasted an hour trying to sort the blinking thing out. It was saved in drafts and i just could not edit it so there it is published and not finished. I don't know if someone somewhere is sending me a message!!!
I believe i was getting very depressing on that page for everyone to read. Not a good place to be. So i will try to end on a positive note because tomorrow is another day.........
The family grouped together and headed off through the fields. Thank goodness the harvest had been gathered in, the stubble allowed a better walking surface.
The night was not as dark as usual out in the fens where you would not normally be able to See one foot in front of the other. The glow from the fires cast eerie shadows over the group but allowed them to see where they were going.
Just where were these Monks walks Jane wondered. There has never been a monastery any where near this quiet fenland town that she was aware of.
Old man Riley was grumbling to him self as he walked and the children were giggling at his efforts. Oh to be young and just see the surface of days events.At least his actions were taking there minds off the nights happenings.
They were reaching a tree line and they paused to get their breaths. Each of them carried rucksacks, Andrew and Jane were also struggling with large holdalls.Jane wondered if she should tuck it in the hedge and return for it later but reconsidered as she didn't know how far they still had to go. How easy it had been to map out the route during their walks in the daytime.
Best be careful in these trees old man Riley said. There have been a lot of them asylum seekers been camping out for years and made these woodlands there homes. Surely not here said Andrew with a frown we have been keeping regular checks in a 10 mile radius.
Where we need to go will just be a stopping place. Rest eat, sleep and move on.
Deep in the country there was a farm which would enable the community of friends to live and sustain themselves during this crisis.
I believe i was getting very depressing on that page for everyone to read. Not a good place to be. So i will try to end on a positive note because tomorrow is another day.........
The family grouped together and headed off through the fields. Thank goodness the harvest had been gathered in, the stubble allowed a better walking surface.
The night was not as dark as usual out in the fens where you would not normally be able to See one foot in front of the other. The glow from the fires cast eerie shadows over the group but allowed them to see where they were going.
Just where were these Monks walks Jane wondered. There has never been a monastery any where near this quiet fenland town that she was aware of.
Old man Riley was grumbling to him self as he walked and the children were giggling at his efforts. Oh to be young and just see the surface of days events.At least his actions were taking there minds off the nights happenings.
They were reaching a tree line and they paused to get their breaths. Each of them carried rucksacks, Andrew and Jane were also struggling with large holdalls.Jane wondered if she should tuck it in the hedge and return for it later but reconsidered as she didn't know how far they still had to go. How easy it had been to map out the route during their walks in the daytime.
Best be careful in these trees old man Riley said. There have been a lot of them asylum seekers been camping out for years and made these woodlands there homes. Surely not here said Andrew with a frown we have been keeping regular checks in a 10 mile radius.
Where we need to go will just be a stopping place. Rest eat, sleep and move on.
Deep in the country there was a farm which would enable the community of friends to live and sustain themselves during this crisis.
day 23
Sun shining when i got up today. That seemed to be good omen. Well it was until Tim asked me to check some bits in the shed to see what needed to be thrown away. In a box was some bits and bobs, cricket bat and wickets, hand exercisers and Mikeys Miami Dolphin American football. That did it i just started crying and have been doing so off and on all day.
We went to Kings Lynn because i fitted those dresses on that i bought and they were too long so i took them back and got a pair of trousers instead. Plain black for work. Couldnt think of anything else i wanted.
Had a Mc Donalds. Thats becoming a regular thing as well just because we cant be bothered to cook.
Jen my sister phoned whilst we were out and asked if i would go to York with her next Friday and stay over the night. Jen had been invited to an anniversary party and as Dud ley didnt want to go would i go with her as she didnt want to go alone. Tim thought it would be good for me and said i should go. So i told Jen yes. Not sure if its the right thing to dod but its time to do the unusual for me.
Jen booked the hotel there and then so i guess thats it. Tim said he will take me to Jens so we can go from there. Oh well whats done is done now.
The day has gone so slowly. I saw Claire on line and tried to message her both on facebook and messenger but no reply! oh well cant say im not trying. I expect i need to phone her.
We went for drive tonight and shot off on the M11 and do you know i never really gave it a thought where Mikey drove from and to. It was quite a trip to us. How boring are we.
I opened a fortune cookie today and it read No one can walk backwards into the future and thats very true, is that what i am doing. I do wonder.
For a blog my pages seem very boring. I have read several others and they seem so chatty and alive. Mine reads like a self help to depression journal. Maybe i will re visit the pages later and see what a sad person i am. Thats for then and this is now.
I went into the bedroom and Mikeys picture is on my unit and it looks as though he is looking straight at you and his eyes seem so alive. I wonder what he is thinking. I wonder if there is a better place and whats he doing. Not wasting time worrying about us i should hope.
I looked at myself in the mirror and saw an old woman looking back. Thats what i am though coming up to 60yrs. How can i have forgotten. Now i feel every year of my age. 2 months ago i still felt 20 inside.
I really should pull myself together but why, for what reason. I feel as though im a mouse on a wheel and just cant get off. Thats my head the rest of me is like a slothe.
Maybe i am coming to terms with my mortality.
Tim is keeping himself busy its a good job someone is else nothing would get doen. I dont care out housework washing hoovering. Nothing at all. Am i just feeling sorry for myself or is this normal. I just dont know. Its a terrible place to be. But if i feel like this how the hell must Mikey have been feeling. Go d Sue get a grip.
We went to Kings Lynn because i fitted those dresses on that i bought and they were too long so i took them back and got a pair of trousers instead. Plain black for work. Couldnt think of anything else i wanted.
Had a Mc Donalds. Thats becoming a regular thing as well just because we cant be bothered to cook.
Jen my sister phoned whilst we were out and asked if i would go to York with her next Friday and stay over the night. Jen had been invited to an anniversary party and as Dud ley didnt want to go would i go with her as she didnt want to go alone. Tim thought it would be good for me and said i should go. So i told Jen yes. Not sure if its the right thing to dod but its time to do the unusual for me.
Jen booked the hotel there and then so i guess thats it. Tim said he will take me to Jens so we can go from there. Oh well whats done is done now.
The day has gone so slowly. I saw Claire on line and tried to message her both on facebook and messenger but no reply! oh well cant say im not trying. I expect i need to phone her.
We went for drive tonight and shot off on the M11 and do you know i never really gave it a thought where Mikey drove from and to. It was quite a trip to us. How boring are we.
I opened a fortune cookie today and it read No one can walk backwards into the future and thats very true, is that what i am doing. I do wonder.
For a blog my pages seem very boring. I have read several others and they seem so chatty and alive. Mine reads like a self help to depression journal. Maybe i will re visit the pages later and see what a sad person i am. Thats for then and this is now.
I went into the bedroom and Mikeys picture is on my unit and it looks as though he is looking straight at you and his eyes seem so alive. I wonder what he is thinking. I wonder if there is a better place and whats he doing. Not wasting time worrying about us i should hope.
I looked at myself in the mirror and saw an old woman looking back. Thats what i am though coming up to 60yrs. How can i have forgotten. Now i feel every year of my age. 2 months ago i still felt 20 inside.
I really should pull myself together but why, for what reason. I feel as though im a mouse on a wheel and just cant get off. Thats my head the rest of me is like a slothe.
Maybe i am coming to terms with my mortality.
Tim is keeping himself busy its a good job someone is else nothing would get doen. I dont care out housework washing hoovering. Nothing at all. Am i just feeling sorry for myself or is this normal. I just dont know. Its a terrible place to be. But if i feel like this how the hell must Mikey have been feeling. Go d Sue get a grip.
Saturday 18 September 2010
Day 22
Well today started of with the sun shining and dew glistening on the lawn, an Autumn feel in the air.
Its so hard to get any enthusiasm about myself. I have no interest in clothes, jewellery and my appearance. Left alone i don't think i would bother to wash/bath or dress. Its only because of Tim that i bother at all.
There is this feeling of anticipation in the air, a sense of waiting and yet nothing happens. The weekends are the worst for me as we would plan our days around hospital visits. The days just drag and i cant wait for night to come. Michael i know wouldn't want this and yet i feel this is our grieving time. Is this grieving i really don't know.
Tims in bed and i can hear him coughing in his sleep. He has been like this for months now. I often wonder if this is a result of passive smoking. His parents smoked from his birth so you never know.
Tom phoned this morning. Why is it that i spent more time worrying over Tom than i ever did over Mikey. Mikey was so wise and worldly Tom just doesn't have the confidence that Mikey had. Yes i worried over Mikeys health but we knew he could look after himself. What he didn't know he would ask or he would try for himself. Mikey was a good housekeeper where Tom just hasn't a clue. Everything is a big problem for him and i know Mikey would just shrug these off. Mikey knew what was important and i think we should all learn from that.
Tom did sound more cheerful today James stopped last night so he has had some company. Then he got a puncture in his car so that caused a few probs but Tim managed to talk to him and discuss how etc. Tom phoned back later to say he had got it all sorted out and car now back on the road. Thank goodness.
Had a good walk this afternoon and popped to see Joni this evening for an hour. When i got home Tim was clearing out the garden shed and my exercise building. I don't need it now because i have everything in Mikeys room. I used to lay on his bed most nights but haven't managed to do that since he left us. I will one day i hope but its too painful at the moment. There are two dresses on the bed still in the bags from the shop. No interest at all, not even tried them on. Mikey would say their was definitely something wrong with me. Even Tim finds it hard that i cannot be persuaded to go shopping, and hes prepared to take me and he loathes going shopping!!
I still haven't managed to catch Claire on line yet to discuss the visit to Mark Turner i will try tomorrow.
Don't know what we will do tomorrow. Tim keeps saying what do you want to do but sometimes it would be nice if he just said right, we are going.......... instead of me trying to think what he would like to do. That's always been my problem i always try to do what everyone else wants and then that becomes misinterpreted. I just wish i had that confidence to say what i want. The only place i used to feel confident was at work. It was my place and Tim and home had no input. My training ,m my job. Pity i wasn't as assertive at home, still i cant change now its far too late. Cant please everyone.
Well i think I'm a bit earlier tonight so may get my walking in without to much trouble.
We will see what tomorrow brings, after all it is another day.
Andrew whispered i found old man Riley out on the far bank, hes been knocked out but no real damage that i can see. I couldn't just leave him out there and we can always do with extra help.
Jane gathered the children close. How is everything in town she asked, Andrew looked at her and suggested they talk later.
Right said Jane to the children we have a bit of an adventure for you we are going to walk across the fields and the ditches to get to a holiday home. We are going to stay there for a while and wait for some friends, we have to be very careful and very brave do you think you can manage that.
Mathew raised his eyebrows and said p.lease we are not babies whats happening to our home why cant we go there
Andrew crouched down in order for him to look directly into the faces of his children. The town has been damaged by all the explosions tonight. Until the gas mains have been sealed or gas supply is turned off fires will continue to rage, there is no safe place for us to stay. We hope to be joined by some of our friends and their children. Who there will be and how many Mum and i don't know but it will not be too lonely for you.
A huge explosion and flames shot into the sky screaming could be heard across the fields from the town. Old man Riley stirred and muttered to anyone who would listen. Which way are we headed. Andrew told him where they were going. You need to keep to this hedgerow when we get to the bottom field i will show you a short cut, not many people here abouts know it but my family have farmed this land for generations. I suppose you've found the Monks walk way by now and that's why we are going to the 16 foot bank.
Jane and Andrew looked at each other in puzzlement and voiced their lack of knowledge.
Ah well then best we be on our way and i will explain as we go.
Its so hard to get any enthusiasm about myself. I have no interest in clothes, jewellery and my appearance. Left alone i don't think i would bother to wash/bath or dress. Its only because of Tim that i bother at all.
There is this feeling of anticipation in the air, a sense of waiting and yet nothing happens. The weekends are the worst for me as we would plan our days around hospital visits. The days just drag and i cant wait for night to come. Michael i know wouldn't want this and yet i feel this is our grieving time. Is this grieving i really don't know.
Tims in bed and i can hear him coughing in his sleep. He has been like this for months now. I often wonder if this is a result of passive smoking. His parents smoked from his birth so you never know.
Tom phoned this morning. Why is it that i spent more time worrying over Tom than i ever did over Mikey. Mikey was so wise and worldly Tom just doesn't have the confidence that Mikey had. Yes i worried over Mikeys health but we knew he could look after himself. What he didn't know he would ask or he would try for himself. Mikey was a good housekeeper where Tom just hasn't a clue. Everything is a big problem for him and i know Mikey would just shrug these off. Mikey knew what was important and i think we should all learn from that.
Tom did sound more cheerful today James stopped last night so he has had some company. Then he got a puncture in his car so that caused a few probs but Tim managed to talk to him and discuss how etc. Tom phoned back later to say he had got it all sorted out and car now back on the road. Thank goodness.
Had a good walk this afternoon and popped to see Joni this evening for an hour. When i got home Tim was clearing out the garden shed and my exercise building. I don't need it now because i have everything in Mikeys room. I used to lay on his bed most nights but haven't managed to do that since he left us. I will one day i hope but its too painful at the moment. There are two dresses on the bed still in the bags from the shop. No interest at all, not even tried them on. Mikey would say their was definitely something wrong with me. Even Tim finds it hard that i cannot be persuaded to go shopping, and hes prepared to take me and he loathes going shopping!!
I still haven't managed to catch Claire on line yet to discuss the visit to Mark Turner i will try tomorrow.
Don't know what we will do tomorrow. Tim keeps saying what do you want to do but sometimes it would be nice if he just said right, we are going.......... instead of me trying to think what he would like to do. That's always been my problem i always try to do what everyone else wants and then that becomes misinterpreted. I just wish i had that confidence to say what i want. The only place i used to feel confident was at work. It was my place and Tim and home had no input. My training ,m my job. Pity i wasn't as assertive at home, still i cant change now its far too late. Cant please everyone.
Well i think I'm a bit earlier tonight so may get my walking in without to much trouble.
We will see what tomorrow brings, after all it is another day.
Andrew whispered i found old man Riley out on the far bank, hes been knocked out but no real damage that i can see. I couldn't just leave him out there and we can always do with extra help.
Jane gathered the children close. How is everything in town she asked, Andrew looked at her and suggested they talk later.
Right said Jane to the children we have a bit of an adventure for you we are going to walk across the fields and the ditches to get to a holiday home. We are going to stay there for a while and wait for some friends, we have to be very careful and very brave do you think you can manage that.
Mathew raised his eyebrows and said p.lease we are not babies whats happening to our home why cant we go there
Andrew crouched down in order for him to look directly into the faces of his children. The town has been damaged by all the explosions tonight. Until the gas mains have been sealed or gas supply is turned off fires will continue to rage, there is no safe place for us to stay. We hope to be joined by some of our friends and their children. Who there will be and how many Mum and i don't know but it will not be too lonely for you.
A huge explosion and flames shot into the sky screaming could be heard across the fields from the town. Old man Riley stirred and muttered to anyone who would listen. Which way are we headed. Andrew told him where they were going. You need to keep to this hedgerow when we get to the bottom field i will show you a short cut, not many people here abouts know it but my family have farmed this land for generations. I suppose you've found the Monks walk way by now and that's why we are going to the 16 foot bank.
Jane and Andrew looked at each other in puzzlement and voiced their lack of knowledge.
Ah well then best we be on our way and i will explain as we go.
Friday 17 September 2010
Day 21
Today i was off work and i suppose this is the start of my holidays. An unpleasant task that i need to do. I had to go to see Mark Turner.
Mark was extremely helpful and supportive. The ashes are with him and now i have to decide what to do them They are legally mine. I asked about our plots in Eastwood and Mark confirmed that two had been arranged with the local council. Mark will obtain the plot numbers for us although it can take up to 7 months for the deeds to come through!! We can at least include the plot numbers in our will. That way Tom wont have to worry about that. Tim wants to keep Mikeys ashes at home at the moment. As to what is going to happen to the rest i am not sure. This is something i need to discuss with Claire. Mark was also able to clarify the issues with the flowers that Claire ordered.
On my return home Jen phoned Tim on his mobile and asked if he was away on holiday!! I heard Tim say no we don't know what we are doing we are taking it a day at a time. Jen then said Ash had gone to the Dr's last night and told him about Mikey Dr Warrender was very upset as he didn't know. Jen said i hope it was OK for Ash to tell him. Well a tad too late now if it was. Jen then asked if he had heard from anyone. Tim said Sue has spoken to Claire but that was all. It was only later that Tim thought how did Jen know Sue was on holiday as he had not told her so she must have known before ringing. Strange.
We went over to Bay tree and bought some shrubs and some Spring bulbs to plant. Only problem was that we bought established bushes and then had trouble getting them in the car!!! Still managed to get them home with no damage.
The sun was out so we thought we would get planting. We found a pigeon on the lawn that was squeaking and had his neck twisted back. It looked in distress and couldn't fly.
Our neighbor Mel was talking to Tim over the fence and he agreed to come and put it out of its misery as Tim or i could not do anything. He told me to get a bag ready. I found a heavy duty black bag which i thrust at Tim and said you will have to hold it while i went and hid behind the wall whilst the deed was done.
Mel told us he had just spent a few days in Scarborough, and thought Tim and i may enjoy a few days there, so i think that's where we Will go next week.
We planted a hedge along the bungalow wall and will keep it trimmed so it becomes a box hedge under the windows. Tim thought it would be good to plant some thing and watch it grow. I planted snowdrops and daffodils along the borders so i can look for Spring arriving!! The last time i put bulbs in was when we moved here 14 years ago. We also planted out the shrub Joy bought us the day after Mikey passed away. Its called Innocence and sprouts white flowers. We will enjoy watching that grow to. It was a good feeling to be in the garden working. Doing something physical for a change.
We had an hour in Hunstanton this evening, watched a film tonight and went late night shopping. Not that we are eating much at the moment.
I then watched another film that i have been wanting to see for ages.
I then decided to do my blog and its 02.07hrs at this very moment.
he day has gone quickly and apart from being upset this morning i feel today has gone well.
Gardening must be a balm to the soul.
I hope tomorrow feels like this, we will see, we will see.
For the past few years the country had spiraled into a decline. No money the banks had all folded. Starving citizens in a country where the population had increased to such a level that we in England could not sustain.
We were some of the lucky ones. We could see what we was heading into. Andrew and a group of people who had only made contact on the Internet conversed for 3 years planning for this day.
Safe houses, if they can be called that all over the country waited for us to begin another community.
The country is not dead at the moment but all power sources were down.
Where was Andrew, another 30 Min's and we would have to move on and hope that he will find us.
Jessica began pulling on my jacket 'mummy i need to pee' I looked around and in the darkness could only think to go deeper into the hedgerow, i dare not switch on the torch tucked into my jeans pocket. At 7 Jessica was not sure that she should be using such unorthodox places to go to the toilet after much persuasion and 9 year old Mathew saying 'for goodness sake do you think we care , im going to keep watch for dad because he said that's the most important job for us to do, just hurry'.
A rustle in the distance and a dark shape began to emerge close to where we were hidden, not one person but two. Moving slowly and furtively until they were standing directly in front of us. 'Jessie are you here' I crawled out of the hedge and threw myself at Andrew not realising just how scared i had become.
Who had he bought with him, that was not in our plan. Another mouth to feed.
Mark was extremely helpful and supportive. The ashes are with him and now i have to decide what to do them They are legally mine. I asked about our plots in Eastwood and Mark confirmed that two had been arranged with the local council. Mark will obtain the plot numbers for us although it can take up to 7 months for the deeds to come through!! We can at least include the plot numbers in our will. That way Tom wont have to worry about that. Tim wants to keep Mikeys ashes at home at the moment. As to what is going to happen to the rest i am not sure. This is something i need to discuss with Claire. Mark was also able to clarify the issues with the flowers that Claire ordered.
On my return home Jen phoned Tim on his mobile and asked if he was away on holiday!! I heard Tim say no we don't know what we are doing we are taking it a day at a time. Jen then said Ash had gone to the Dr's last night and told him about Mikey Dr Warrender was very upset as he didn't know. Jen said i hope it was OK for Ash to tell him. Well a tad too late now if it was. Jen then asked if he had heard from anyone. Tim said Sue has spoken to Claire but that was all. It was only later that Tim thought how did Jen know Sue was on holiday as he had not told her so she must have known before ringing. Strange.
We went over to Bay tree and bought some shrubs and some Spring bulbs to plant. Only problem was that we bought established bushes and then had trouble getting them in the car!!! Still managed to get them home with no damage.
The sun was out so we thought we would get planting. We found a pigeon on the lawn that was squeaking and had his neck twisted back. It looked in distress and couldn't fly.
Our neighbor Mel was talking to Tim over the fence and he agreed to come and put it out of its misery as Tim or i could not do anything. He told me to get a bag ready. I found a heavy duty black bag which i thrust at Tim and said you will have to hold it while i went and hid behind the wall whilst the deed was done.
Mel told us he had just spent a few days in Scarborough, and thought Tim and i may enjoy a few days there, so i think that's where we Will go next week.
We planted a hedge along the bungalow wall and will keep it trimmed so it becomes a box hedge under the windows. Tim thought it would be good to plant some thing and watch it grow. I planted snowdrops and daffodils along the borders so i can look for Spring arriving!! The last time i put bulbs in was when we moved here 14 years ago. We also planted out the shrub Joy bought us the day after Mikey passed away. Its called Innocence and sprouts white flowers. We will enjoy watching that grow to. It was a good feeling to be in the garden working. Doing something physical for a change.
We had an hour in Hunstanton this evening, watched a film tonight and went late night shopping. Not that we are eating much at the moment.
I then watched another film that i have been wanting to see for ages.
I then decided to do my blog and its 02.07hrs at this very moment.
he day has gone quickly and apart from being upset this morning i feel today has gone well.
Gardening must be a balm to the soul.
I hope tomorrow feels like this, we will see, we will see.
For the past few years the country had spiraled into a decline. No money the banks had all folded. Starving citizens in a country where the population had increased to such a level that we in England could not sustain.
We were some of the lucky ones. We could see what we was heading into. Andrew and a group of people who had only made contact on the Internet conversed for 3 years planning for this day.
Safe houses, if they can be called that all over the country waited for us to begin another community.
The country is not dead at the moment but all power sources were down.
Where was Andrew, another 30 Min's and we would have to move on and hope that he will find us.
Jessica began pulling on my jacket 'mummy i need to pee' I looked around and in the darkness could only think to go deeper into the hedgerow, i dare not switch on the torch tucked into my jeans pocket. At 7 Jessica was not sure that she should be using such unorthodox places to go to the toilet after much persuasion and 9 year old Mathew saying 'for goodness sake do you think we care , im going to keep watch for dad because he said that's the most important job for us to do, just hurry'.
A rustle in the distance and a dark shape began to emerge close to where we were hidden, not one person but two. Moving slowly and furtively until they were standing directly in front of us. 'Jessie are you here' I crawled out of the hedge and threw myself at Andrew not realising just how scared i had become.
Who had he bought with him, that was not in our plan. Another mouth to feed.
Thursday 16 September 2010
Day 20
A day of torment today. After last night and discovering some things that perhaps i should not have done have left me ripped apart today. Instead of answers i just have more questions and i very much doubt if they will ever be answered.
So where do i go from here. I don't feel i can move on at this time, i don't even know if i want to. I seem to be grateful for the pain at least it means i am feeling something.
I have heard constantly that Michael would have wanted this or he would not have wanted this. He isn't here to say for himself. The reassurance i need is not forthcoming and will not be because the one person who has the answers is not here to speak for himself.
Anger is better than this great big nothing. I sit here waiting for him to contact me again. How many times do i have to tell myself that its not going to happen but this expectation will not go away.
Tim looks so tired tonight, he spoke about Michael today and said he thinks about him all the time. Tim said he doesn't think its real and it hasn't sunk in. He keeps expecting the phone to go or for him to go off and have his visits on Tuesdays and Thursdays whilst i am swimming but then remembers. Tim says he keeps telling himself that he said he didn't want Mikey to have the op but wonders how he would feel if Mikey had listened to him and he had continued to deteriorate he would then have wished he hadn't stopped it. So Tim is also having scenarios running through his head.
What is it that makes us so afraid to discuss Mikey with Claire except at a very shallow level. Just talking about now and not what was, i expect because we hurt for him but Mikey didn't feel the same way. Garbled i know but i understand my own writing. Well its a good job someone does.
I have discussed with many people if they believe that actions taken have consequences later i lives. I hope so. I guess that depends if they have consciences. I fervently pray that will be the case. There has to be some accountability whether that is today or in the future. I understand the context of this and that's all that matters.
I just hope that those who have added to my families distress live to regret their actions. Is that charitable? well of course not but i don't care at all. I have come to accept that i have become very unforgiving. I only hope that this is for now and that i don't spend my life thinking like this about the whole human race. There are good people in the world i do know that and often in the places we least expect.
I wonder if i should ask for counselling. Ha that may not be enough!!!!! i am already a lost cause. Mikey really benefited from his sessions of that i am now very aware and grateful that was available for him.
Mikey had some friends and he had some very good friends and i have now been lucky enough that some of those have made contact with me. Knowing that they were privilaged to share some of his most painful feelings. They like us amazed by his capacity to love against all odds. They too have found some things hard to come to terms with but are also taking strength from Mikey. That does give me some peace knowing he had their support.
I wish i could take my thinking head off but i cant so i will just have to keep coming on here and off load. It does help. So i will add a story to stop me ending on a negative note.
Tomorrow is another day..........
They crouched against the hedges. It was dark and cold but the Mother knew that this was the safest place to be. The world had gone mad and the remaining members of the human race would face unbelievable struggles to exist in this new world.
The flames from the town began to light the fields where they had escaped to, she began to fear for their safety. The two young children who snuggled against her began to cry.
Jane looked at her watch how long would Andrew be. It must have been 3 hours now since the first explosion. Jane knew exactly what it was she had been preparing for this day for years.
The legacy left for her from her Grandmother enabled some measure of preparation. The route taken tonight, the places where supplies had been hidden all a result of a letter warning of this day.
How many other had managed to get out of town Jane didn't know. The gas pipes were, she knew the source of the fires. These would continue to ignite. The only safe place was in the fens where it had been to costly to install the mains pipework.
So where do i go from here. I don't feel i can move on at this time, i don't even know if i want to. I seem to be grateful for the pain at least it means i am feeling something.
I have heard constantly that Michael would have wanted this or he would not have wanted this. He isn't here to say for himself. The reassurance i need is not forthcoming and will not be because the one person who has the answers is not here to speak for himself.
Anger is better than this great big nothing. I sit here waiting for him to contact me again. How many times do i have to tell myself that its not going to happen but this expectation will not go away.
Tim looks so tired tonight, he spoke about Michael today and said he thinks about him all the time. Tim said he doesn't think its real and it hasn't sunk in. He keeps expecting the phone to go or for him to go off and have his visits on Tuesdays and Thursdays whilst i am swimming but then remembers. Tim says he keeps telling himself that he said he didn't want Mikey to have the op but wonders how he would feel if Mikey had listened to him and he had continued to deteriorate he would then have wished he hadn't stopped it. So Tim is also having scenarios running through his head.
What is it that makes us so afraid to discuss Mikey with Claire except at a very shallow level. Just talking about now and not what was, i expect because we hurt for him but Mikey didn't feel the same way. Garbled i know but i understand my own writing. Well its a good job someone does.
I have discussed with many people if they believe that actions taken have consequences later i lives. I hope so. I guess that depends if they have consciences. I fervently pray that will be the case. There has to be some accountability whether that is today or in the future. I understand the context of this and that's all that matters.
I just hope that those who have added to my families distress live to regret their actions. Is that charitable? well of course not but i don't care at all. I have come to accept that i have become very unforgiving. I only hope that this is for now and that i don't spend my life thinking like this about the whole human race. There are good people in the world i do know that and often in the places we least expect.
I wonder if i should ask for counselling. Ha that may not be enough!!!!! i am already a lost cause. Mikey really benefited from his sessions of that i am now very aware and grateful that was available for him.
Mikey had some friends and he had some very good friends and i have now been lucky enough that some of those have made contact with me. Knowing that they were privilaged to share some of his most painful feelings. They like us amazed by his capacity to love against all odds. They too have found some things hard to come to terms with but are also taking strength from Mikey. That does give me some peace knowing he had their support.
I wish i could take my thinking head off but i cant so i will just have to keep coming on here and off load. It does help. So i will add a story to stop me ending on a negative note.
Tomorrow is another day..........
They crouched against the hedges. It was dark and cold but the Mother knew that this was the safest place to be. The world had gone mad and the remaining members of the human race would face unbelievable struggles to exist in this new world.
The flames from the town began to light the fields where they had escaped to, she began to fear for their safety. The two young children who snuggled against her began to cry.
Jane looked at her watch how long would Andrew be. It must have been 3 hours now since the first explosion. Jane knew exactly what it was she had been preparing for this day for years.
The legacy left for her from her Grandmother enabled some measure of preparation. The route taken tonight, the places where supplies had been hidden all a result of a letter warning of this day.
How many other had managed to get out of town Jane didn't know. The gas pipes were, she knew the source of the fires. These would continue to ignite. The only safe place was in the fens where it had been to costly to install the mains pipework.
Wednesday 15 September 2010
Day 19
Its a horrible day today. Its like winter. The season appears to be matching my mood and the recent events.
Tim continues to worry me despite him saying he is fine. You can see the changes in his face. The energy has gone. Life appears to be seeping out of him day by day. I don't know what to do. I cant help myself how on earth do i help someone who says they do not need anything. Is this part of the grieving process. I don't know i have no experience to draw on. I lost my parents and a brother but nothing compares to this gaping hole that is forever present.
I sit at the computer waiting for a message from Mikey. I know its not going to happen in my head but my heart is saying wait.
Time is a great healer they say, and yet is my biggest enemy at the moment. Will that change i don't know. Will we adapt, i don't know.
I have not had response from e mail yet from the parent of the cf adult, i hope i do.
I couldn't manage to get to see Mark Turner today, i thought i would finish early today but a problem occurred.
Its just not easy to get away like some of the other managers do. Is this habit on my part maybe.
I am going to use the two weeks holiday period i have to really reflect my direction and perhaps set myself a goal regarding work. I have appreciated coming home at lunch time. The home is still standing on my return so why didn't i do that before now. Maybe its because i realise the importance of living a little more.
I spoke to Tom tonight and was on the phone for 40mins. I felt so depressed after talking to him. Tom has been decorating and unhappy with the house, the position of the house, the children and people around him the drivers and the whole area. Tom was unhappy with the way he has to pay bills the length of time he has to wait for other people to do things. He cannot plan because of his job. Everything you could think of. In reality I'm afraid we have to wait for other people they cannot just do things when we want. Tom has to learn to have patience and appreciate that given the choice his brother would have been more than happy to cope with Toms life.
Toms dog Rocky comes first and if the choice comes between his job and the dog the dog would be a priority. I just wish Tom could see that you can have both. A dog cannot have a conversation with you. For two weeks Tim, me and Linda have been the only ones to talk to him. How lonely he must be. How on earth do we get him motivated. I think he would be the same where ever he is though. Tom just cant let go and enjoy himself and he must.
Tim's watching the football tonight he will miss his pal to talk to about it. I'm useless i tried to show interest tonight but the only comment i made was don't they look you to be playing football. I then realised my age and that's so bad when age catches up with you with a bang. Everything is heading South, well and east and most definitely west. No chance of any return to the north setting.
I'm seriously thinking about going to see a spiritualist. I wonder if that will help. Is it possible that there are people who can reach the spirit world, or are they charletons. I wonder i really do.
Am i just clutching at straws am i going to make myself a victim of some foolish hope that i will hear from Mikey To be honest so what, so bloody what, if it makes me feel better. I can live in a fantasy world on the odd occasion cant i?
Its Thursday again tomorrow and it will be 5 weeks. It seems longer, a lifetime.
Oh well tomorrow is another day.......................
Tim continues to worry me despite him saying he is fine. You can see the changes in his face. The energy has gone. Life appears to be seeping out of him day by day. I don't know what to do. I cant help myself how on earth do i help someone who says they do not need anything. Is this part of the grieving process. I don't know i have no experience to draw on. I lost my parents and a brother but nothing compares to this gaping hole that is forever present.
I sit at the computer waiting for a message from Mikey. I know its not going to happen in my head but my heart is saying wait.
Time is a great healer they say, and yet is my biggest enemy at the moment. Will that change i don't know. Will we adapt, i don't know.
I have not had response from e mail yet from the parent of the cf adult, i hope i do.
I couldn't manage to get to see Mark Turner today, i thought i would finish early today but a problem occurred.
Its just not easy to get away like some of the other managers do. Is this habit on my part maybe.
I am going to use the two weeks holiday period i have to really reflect my direction and perhaps set myself a goal regarding work. I have appreciated coming home at lunch time. The home is still standing on my return so why didn't i do that before now. Maybe its because i realise the importance of living a little more.
I spoke to Tom tonight and was on the phone for 40mins. I felt so depressed after talking to him. Tom has been decorating and unhappy with the house, the position of the house, the children and people around him the drivers and the whole area. Tom was unhappy with the way he has to pay bills the length of time he has to wait for other people to do things. He cannot plan because of his job. Everything you could think of. In reality I'm afraid we have to wait for other people they cannot just do things when we want. Tom has to learn to have patience and appreciate that given the choice his brother would have been more than happy to cope with Toms life.
Toms dog Rocky comes first and if the choice comes between his job and the dog the dog would be a priority. I just wish Tom could see that you can have both. A dog cannot have a conversation with you. For two weeks Tim, me and Linda have been the only ones to talk to him. How lonely he must be. How on earth do we get him motivated. I think he would be the same where ever he is though. Tom just cant let go and enjoy himself and he must.
Tim's watching the football tonight he will miss his pal to talk to about it. I'm useless i tried to show interest tonight but the only comment i made was don't they look you to be playing football. I then realised my age and that's so bad when age catches up with you with a bang. Everything is heading South, well and east and most definitely west. No chance of any return to the north setting.
I'm seriously thinking about going to see a spiritualist. I wonder if that will help. Is it possible that there are people who can reach the spirit world, or are they charletons. I wonder i really do.
Am i just clutching at straws am i going to make myself a victim of some foolish hope that i will hear from Mikey To be honest so what, so bloody what, if it makes me feel better. I can live in a fantasy world on the odd occasion cant i?
Its Thursday again tomorrow and it will be 5 weeks. It seems longer, a lifetime.
Oh well tomorrow is another day.......................
Tuesday 14 September 2010
Day 18
I have been worrying all day about approaching Claire for some mementos of Michaels. Wondering if it was too soon to ask or if i would offend her by asking. How do you do this. Has anyone else been in a similar situation? i don't know.
Work today was difficult and i think it was because i had so much on my mind. I do need to be able to concentrate better or it will be a waste of time going. I do have this fear of not pulling my weight, when does enough be enough for the people i work with. They are really patient with me. I have managed now to go into 3 units my next hurdle will be HC. But not yet, no not just yet.
Tim doesn't look well and I'm worried about him but he says he is fine. I wonder if a puppy will help? i think i will talk about this whilst we are on holiday.
On our walk tonight Tim said me must do something with our lives and seemed a bit more interested in getting our passports. I said to him the only thing now that will stop us is ourselves. Tim said that when Mike was here we would always think that Mikey might need us and even when we were due for a holiday and Mike was unwell he would insist we go. I think that's the thing we still don't feel able to do things. I expect in time this will change.
Will phone Tom tomorrow and see how he is. We are not sure if his friend James is going to see him on Friday, we will ask if he wants us to come up and take him out for a meal. Although last time we did this he was unwell!!! So perhaps another treat would be in order. We will see.
I managed to get Claire on line this evening and had a long chat. As always she asked how we all were. Claire said that she thought Tim would be very affected by Mikey's death and she is right. It was good to chat and i was able to ask if we could have something of Mikeys and she said yes what would we like. I feel a little more confident now to discuss this with her.
Claire had had a letter from Turners about the flowers. We still haven't heard a thing even about the ashes. Claire said she would pay for the flowers and collect Mikeys ashes at the same time, but was a little confused about the letter. I will go in tomorrow and ask Mark about our invoice which we have not had yet and about Claires. I will let her know tomorrow as well.
Its hard to go in there by myself, but Tim still cant do that either. I wonder if anyone has realised how hard it has been for me. Just because i may appear to have the skills needed for it when it is your own it is so different, but someone has to do it.
When i have finished this blog i am going to email the CF specialist nurses to ask if they will put me in contact with the mum of the other CF adult who passed away. That may help, well i don't think it can do any harm, can it? well we shall see.
I think having some purpose particularly looking at ways of fund raising has given me something to think about and feel more positive. I do expect it to be a bigger task than i am imagining. Oh well there is always Joni, Carol and Nick to fall back on!!! That's going to happen often i expect. I'm not the most stable of people on my feet.
The weather is miserable today its been pouring of rain and cold. I just know its going to be tough this winter. Somone mentioned Christmas today, there is no joy in looking ahead.
I said to Tim tonight i wish we had the gift of seeing into the future but wonder if that would be a burden to great to carry! Would i take on that load? yes i think i would have done but now I'm not so sure. The vision i see is Tim and i becoming older and leaving one son with no other family and that is so scary. I want him to find someone who will love him and be a companion when we are no longer here.
That reminds me we must sort out our will when i am off work. Tim still hasn't made us an appointment. I will ask him to do that tomorrow.
It is strange really that we have had CF in our lives for 25 years, it has dominated our whole existence and now its gone just like that. As if it was pollen on the flowers blown away in a strong wind.
A stealthy ghost that teased us with joy and despair, only to take away that which we loved and nurtured so carefully. A thief of souls, ours included. Why did Michael have to suffer. What was it that made such a wonderful human being have too endure so much his whole life. Michael has gone and with him so did part of us. Is that what life is about. What is the purpose, why did it happen to us. How strange that we are asking those questions now. When we found out Michael had CF we never questioned we accepted. Now i am questioning and i cannot get answers. Is this what they mean when the say 'its one of life's mysteries' may be, maybe.
There are others like him i know, a group of young people struggling with getting through each day, how do they do it. Michael just accepted i think and got the most he could from life, but how and what does a young person feel knowing that they have no future except the next day. Living with uncertainty. God we are so lucky to be alive and be normal. Do we take that for granted? Yes i think we do. Is there a better place? i really hope there is. I hope that Michael is enjoying life on another plane breathing easy and walking normally with his friends and family past. Why is that none has been able to come back and tell us though? Is that another of life's mysteries. Yes i guess it is. It means their existence is as we wish it to be. Tim hopes that we will all be together at some time. I hope so.
Work today was difficult and i think it was because i had so much on my mind. I do need to be able to concentrate better or it will be a waste of time going. I do have this fear of not pulling my weight, when does enough be enough for the people i work with. They are really patient with me. I have managed now to go into 3 units my next hurdle will be HC. But not yet, no not just yet.
Tim doesn't look well and I'm worried about him but he says he is fine. I wonder if a puppy will help? i think i will talk about this whilst we are on holiday.
On our walk tonight Tim said me must do something with our lives and seemed a bit more interested in getting our passports. I said to him the only thing now that will stop us is ourselves. Tim said that when Mike was here we would always think that Mikey might need us and even when we were due for a holiday and Mike was unwell he would insist we go. I think that's the thing we still don't feel able to do things. I expect in time this will change.
Will phone Tom tomorrow and see how he is. We are not sure if his friend James is going to see him on Friday, we will ask if he wants us to come up and take him out for a meal. Although last time we did this he was unwell!!! So perhaps another treat would be in order. We will see.
I managed to get Claire on line this evening and had a long chat. As always she asked how we all were. Claire said that she thought Tim would be very affected by Mikey's death and she is right. It was good to chat and i was able to ask if we could have something of Mikeys and she said yes what would we like. I feel a little more confident now to discuss this with her.
Claire had had a letter from Turners about the flowers. We still haven't heard a thing even about the ashes. Claire said she would pay for the flowers and collect Mikeys ashes at the same time, but was a little confused about the letter. I will go in tomorrow and ask Mark about our invoice which we have not had yet and about Claires. I will let her know tomorrow as well.
Its hard to go in there by myself, but Tim still cant do that either. I wonder if anyone has realised how hard it has been for me. Just because i may appear to have the skills needed for it when it is your own it is so different, but someone has to do it.
When i have finished this blog i am going to email the CF specialist nurses to ask if they will put me in contact with the mum of the other CF adult who passed away. That may help, well i don't think it can do any harm, can it? well we shall see.
I think having some purpose particularly looking at ways of fund raising has given me something to think about and feel more positive. I do expect it to be a bigger task than i am imagining. Oh well there is always Joni, Carol and Nick to fall back on!!! That's going to happen often i expect. I'm not the most stable of people on my feet.
The weather is miserable today its been pouring of rain and cold. I just know its going to be tough this winter. Somone mentioned Christmas today, there is no joy in looking ahead.
I said to Tim tonight i wish we had the gift of seeing into the future but wonder if that would be a burden to great to carry! Would i take on that load? yes i think i would have done but now I'm not so sure. The vision i see is Tim and i becoming older and leaving one son with no other family and that is so scary. I want him to find someone who will love him and be a companion when we are no longer here.
That reminds me we must sort out our will when i am off work. Tim still hasn't made us an appointment. I will ask him to do that tomorrow.
It is strange really that we have had CF in our lives for 25 years, it has dominated our whole existence and now its gone just like that. As if it was pollen on the flowers blown away in a strong wind.
A stealthy ghost that teased us with joy and despair, only to take away that which we loved and nurtured so carefully. A thief of souls, ours included. Why did Michael have to suffer. What was it that made such a wonderful human being have too endure so much his whole life. Michael has gone and with him so did part of us. Is that what life is about. What is the purpose, why did it happen to us. How strange that we are asking those questions now. When we found out Michael had CF we never questioned we accepted. Now i am questioning and i cannot get answers. Is this what they mean when the say 'its one of life's mysteries' may be, maybe.
There are others like him i know, a group of young people struggling with getting through each day, how do they do it. Michael just accepted i think and got the most he could from life, but how and what does a young person feel knowing that they have no future except the next day. Living with uncertainty. God we are so lucky to be alive and be normal. Do we take that for granted? Yes i think we do. Is there a better place? i really hope there is. I hope that Michael is enjoying life on another plane breathing easy and walking normally with his friends and family past. Why is that none has been able to come back and tell us though? Is that another of life's mysteries. Yes i guess it is. It means their existence is as we wish it to be. Tim hopes that we will all be together at some time. I hope so.
Monday 13 September 2010
Day 17
Today has been a bad day for me. No real reason just really teary. Tim bless him can only look on and try to take my mind of things. I know he is worrying about me.
I just broke down at work today and poor Carol offered support but i think i upset her too. I know she felt helpless and Nick bless him he also tried to take my mind of things. I really am blessed to be surrounded by people who care.
Jen called round today but did not stay long. Tim was a bit quiet tonight and when i came home lunch time. He said Jen came round but didn't come in and didn't want a drink, so not much comfort there. He did say though that whilst they may have thought of Mikey as their son he did not think of them as his parents. That is so true.
Linda phoned tonight and she had made contact with Tom and they had a good chat. How lovely was that. Linda was as surprised as me and she will try to ring him each week. I am so grateful for that. I know the only people he hears from now are me and his dad and Joni bless her.
Tim told me there is a programme on TV tomorrow that i may want to watch its about photography. I think he wants me to take it up again, only be a bit more serious about it this time.
I had an idea today about fundraising for the marathon. That is to make some calenders using Mikey and my photos and sell them. I think we may do quite well. It has at least given me something else to think about. I will try to get something organised and we need to be quick because the end of the year is dawning.
Has anyone noticed how cold its getting. Well i have prophesied that all the berries on the hedgerows is a harbinger of a hard winter and i understand from Tim that the weather forecast is snow in October!!!
I was right about the crows nesting high in the spring that we would have a hot summer so keep your eyes skinned is what i say!!
Joni tonight has suggested we have t shirts printed for the marathon and see if we can get seats for one event at the Olympics and go for Mikey. Wouldn't he love that. I know he would dearly loved to have been there but perhaps this is something we can do for him.
Oh and he did so want to see the last Harry Potter film. He wondered if he would be alive for the final one. How so sad that he wont be. I asked him if would go together and he just laughed, it has been a while since those days i think he planned to go with Claire.
Well i better go and have a session with Roger cos otherwise i wont be fit for this marathon!!!
I hope for better things tomorrow. It is after all another day........
I just broke down at work today and poor Carol offered support but i think i upset her too. I know she felt helpless and Nick bless him he also tried to take my mind of things. I really am blessed to be surrounded by people who care.
Jen called round today but did not stay long. Tim was a bit quiet tonight and when i came home lunch time. He said Jen came round but didn't come in and didn't want a drink, so not much comfort there. He did say though that whilst they may have thought of Mikey as their son he did not think of them as his parents. That is so true.
Linda phoned tonight and she had made contact with Tom and they had a good chat. How lovely was that. Linda was as surprised as me and she will try to ring him each week. I am so grateful for that. I know the only people he hears from now are me and his dad and Joni bless her.
Tim told me there is a programme on TV tomorrow that i may want to watch its about photography. I think he wants me to take it up again, only be a bit more serious about it this time.
I had an idea today about fundraising for the marathon. That is to make some calenders using Mikey and my photos and sell them. I think we may do quite well. It has at least given me something else to think about. I will try to get something organised and we need to be quick because the end of the year is dawning.
Has anyone noticed how cold its getting. Well i have prophesied that all the berries on the hedgerows is a harbinger of a hard winter and i understand from Tim that the weather forecast is snow in October!!!
I was right about the crows nesting high in the spring that we would have a hot summer so keep your eyes skinned is what i say!!
Joni tonight has suggested we have t shirts printed for the marathon and see if we can get seats for one event at the Olympics and go for Mikey. Wouldn't he love that. I know he would dearly loved to have been there but perhaps this is something we can do for him.
Oh and he did so want to see the last Harry Potter film. He wondered if he would be alive for the final one. How so sad that he wont be. I asked him if would go together and he just laughed, it has been a while since those days i think he planned to go with Claire.
Well i better go and have a session with Roger cos otherwise i wont be fit for this marathon!!!
I hope for better things tomorrow. It is after all another day........
Sunday 12 September 2010
Day 16
Its the 12th September and its been a month yet it seems a lifetime. I miss Mikey so very much its so hard to accept that we will never see him again.
We didn't get to say our goodbyes. Mikey told us he loved us before going to theatre and we said we would see him later. It should not have ended like that. Yet it was in a way best for Mikey. I keep telling myself that but it doesn't really help.
I can still only think about the week before the op and that fateful day. I wish i could think of the good times, but not yet, not yet.
Tim and i went for a 10 mile walk again today and i took the camera and took some good photos i think. Tim said i should take it up again its years since i did any good stuff. Tim and his Dad used to call me Davinia Bailey!! cos i was always snapping away. Tim called me click happy!!
Had an e mail from Maddy again today its so good that she is keeping in touch. I also spoke to Claire and she asked after Tim and Tom i told her that i was worried about them both. Claire said i could always contact her which was really nice.
Joni bless her has been chatting away on facebook and i generally feel positive afterwards and have a smile at the end of the night. Lovely lovely girl.
Tim looks sad today and has been quieter than usual. He was so low tonight. I popped out to measure the mileage of our walk and his sister phoned him. Tim just seemed totally despondent about her call and they certainly do not give him any comfort. Still perhaps she will be pleasant tomorrow if she comes round. Its laughable to think they avoid asking about me as if i care!!! My goodness i have so many important things on my mind. I also have very good sisters!
I suppose i will have to sort out the last bit this week but i don't want to at all. Never mind little steps.
I will also get in touch with the CF nurses at Papworth this week. Yes that seems a good idea.
Ive left a post on Mikeys wall today. Missing him so very much. Ive said that today haven't I well i guess i will keep saying it.
Tomorrow is another day..............
We didn't get to say our goodbyes. Mikey told us he loved us before going to theatre and we said we would see him later. It should not have ended like that. Yet it was in a way best for Mikey. I keep telling myself that but it doesn't really help.
I can still only think about the week before the op and that fateful day. I wish i could think of the good times, but not yet, not yet.
Tim and i went for a 10 mile walk again today and i took the camera and took some good photos i think. Tim said i should take it up again its years since i did any good stuff. Tim and his Dad used to call me Davinia Bailey!! cos i was always snapping away. Tim called me click happy!!
Had an e mail from Maddy again today its so good that she is keeping in touch. I also spoke to Claire and she asked after Tim and Tom i told her that i was worried about them both. Claire said i could always contact her which was really nice.
Joni bless her has been chatting away on facebook and i generally feel positive afterwards and have a smile at the end of the night. Lovely lovely girl.
Tim looks sad today and has been quieter than usual. He was so low tonight. I popped out to measure the mileage of our walk and his sister phoned him. Tim just seemed totally despondent about her call and they certainly do not give him any comfort. Still perhaps she will be pleasant tomorrow if she comes round. Its laughable to think they avoid asking about me as if i care!!! My goodness i have so many important things on my mind. I also have very good sisters!
I suppose i will have to sort out the last bit this week but i don't want to at all. Never mind little steps.
I will also get in touch with the CF nurses at Papworth this week. Yes that seems a good idea.
Ive left a post on Mikeys wall today. Missing him so very much. Ive said that today haven't I well i guess i will keep saying it.
Tomorrow is another day..............
Saturday 11 September 2010
Day 15
Well its another day and they are not getting any easier at all. Week-ends always seem worse somehow. Perhaps because we used to plan our days around visiting Mikey in hospital or for Tim to bring him home for the day.
We seem quite lost and just struggle through the day. Its Grand Prix again and Mikey would always discuss this with Tim. Tom always off as well and he would always phone to give his analysis of the race. No red bull team on the front grid, first time in 30 races. Mikey would be disappointed because we both liked Mark Webber. Still you never know what will happen. Its in Italy this week.
Just been chatting with Joni on line and we were discussing hair for some strange reason, this reminded me that i had kept my long hair and its in the loft. I wonder if i can sell it and raise money for CF.
Mikeys SMA mag came through today. They have been running for 25 years. I can remember when they started and we heard from a letter. There were just two people who offered support at that time, what a long way they have come.
Still have not heard from Mark Turner so i think i better go and ask whats happening. It may be because we were to let him know about the plots at Eastwood. We need to get that settled and finished with. Its another job and part of closure i think. I don't really want to go but Tim cannot do it. Jen and Ash have no idea what i have had to do and have no insight into how painful all this has been. Oh well i must just forget about it.
This is going to be a short post as its 2 am and Tim will think i have abandoned him again!!
We have both been having strange dreams lately. Did i say in one of my other posts that i dreamt my sister Linda and Tim decided to get together and as i was packing his bag i threw in some food including a tin of peas? Linda said oh look she has even supplied a meal for us. How strange is that!!!
Spoke to Tom today and hes feeling a bit better today and has been out shopping for food. Thank goodness. He is looking forward to the Grand Prix. He has another weeks holiday before he goes to work again. Hope we can get up again next week. I will try to persuade Tim to drive up.
Not heard from Claire about the job that's available at FSHC so i assume she is not interested. At least i have tried. Toms not heard from her either, i wonder if we ever will again. I hope she will let us store Mikeys bits here but i do doubt it. The thing is she will meet someone else and she will not want Mikeys bits then. I would hate them just to be forgotten in someones loft or thrown out. I do hope she will consider us. We will have to wait and see.
Well to bed i think, long walk planned for tomorrow, and more music to download onto my ipod.
We seem quite lost and just struggle through the day. Its Grand Prix again and Mikey would always discuss this with Tim. Tom always off as well and he would always phone to give his analysis of the race. No red bull team on the front grid, first time in 30 races. Mikey would be disappointed because we both liked Mark Webber. Still you never know what will happen. Its in Italy this week.
Just been chatting with Joni on line and we were discussing hair for some strange reason, this reminded me that i had kept my long hair and its in the loft. I wonder if i can sell it and raise money for CF.
Mikeys SMA mag came through today. They have been running for 25 years. I can remember when they started and we heard from a letter. There were just two people who offered support at that time, what a long way they have come.
Still have not heard from Mark Turner so i think i better go and ask whats happening. It may be because we were to let him know about the plots at Eastwood. We need to get that settled and finished with. Its another job and part of closure i think. I don't really want to go but Tim cannot do it. Jen and Ash have no idea what i have had to do and have no insight into how painful all this has been. Oh well i must just forget about it.
This is going to be a short post as its 2 am and Tim will think i have abandoned him again!!
We have both been having strange dreams lately. Did i say in one of my other posts that i dreamt my sister Linda and Tim decided to get together and as i was packing his bag i threw in some food including a tin of peas? Linda said oh look she has even supplied a meal for us. How strange is that!!!
Spoke to Tom today and hes feeling a bit better today and has been out shopping for food. Thank goodness. He is looking forward to the Grand Prix. He has another weeks holiday before he goes to work again. Hope we can get up again next week. I will try to persuade Tim to drive up.
Not heard from Claire about the job that's available at FSHC so i assume she is not interested. At least i have tried. Toms not heard from her either, i wonder if we ever will again. I hope she will let us store Mikeys bits here but i do doubt it. The thing is she will meet someone else and she will not want Mikeys bits then. I would hate them just to be forgotten in someones loft or thrown out. I do hope she will consider us. We will have to wait and see.
Well to bed i think, long walk planned for tomorrow, and more music to download onto my ipod.
Friday 10 September 2010
Day 14
What a day today has been. I thought having Mikey ill was enough but now to find Tom not well is almost too much to bear.
We set off today by train as Tim thought it would be less stressful. Absolutely not but that's for later!
We met Tom at Doncaster, he picked us up at the station and we headed for Meadow Hall in Sheffield we thought we would have a look around and have a meal. Tom has a large dog at home and he is not good with strangers. That's what we are to him. Anyway dogs and me are not a good combination as i am terrified of them.
Toms car is lovely although getting out for me was a little odd. More of that later.
We arrived at Meadow Hall and all seemed well. We looked for somewhere to eat Tom said he really fancied a Harry Ramsdens.
Tom was eating when he said he didn't feel well. Tom was as white as a sheet and had beads of perspiration on his forehead. Tom said he had a really bad pain in his stomach and he had been having episodes like this for a few months. Sometimes much worse than this. Tom said he thought it was because of his poor diet as it got better when he ate properly. Tom then told us that he also had problems with going to the loo properly bouts of diarrhoea and not being able to go. Alarm bells were ringing wholesale when he said that he also passed blood. Tom couldn't continue eating so we took him outside for a while. We then said he had to go to the Dr's. We went back to Doncaster and his surgery.
The surgery was closed for lunch!! So we went to a local service station and waited till they opened.
Tom managed to phone them and got an appointment for 5.30pm.
It was now 2.30pm.
We went back to Doncaster and had a quick look at the shops, Tom bought some DVDs to watch as he doesn't go out at all. He has no social life and must be incredibly lonely by himself. I really wish he could come home. Anyway he said he wanted a shower before he went to the Dr's, so we came home although we really didn't want to.
We thought w would be home by the time he had been to the Dr's and if he needed us to we would return.
The train left on time at 4pm and we should have been home by 5.30pm. Oh no nothing as simple as that. First off there were no seats so we stood in the doorway, we didn't mind as we knew the train was direct to Peterborough so about 45 Min's. Sadly some rotten beggars had vandalised the track at Newark. They had stolen the copper wires to the signals which resulted in a delay. We were standing for 3 hours!!!!
Tom phoned us expecting us to be home but we were only 15 Min's out of Doncaster.
The Dr was very good apparently and gave him a good examination, he didn't think it was anything too sinister. The Dr thinks it maybe Colitis, an inflammation of the bowel or IBS but not sure. He also said that he could see that his brother had Cf and asked how he was. Tom told him and the Dr feels Tom should be tested for that. Tom was unsure if he had been tested in the past. Gut problems are common with CF. Tom said well he couldn't have it hes smoked for some time!!. Tom does get very bad asthma and had a rotten time recently with his chest and had to take time off work. Please don't let it be that!!!!
I know some people didn't even know they had CF until they were quite an age because they had no symptoms early in there life. Tim i know is 508 but they couldn't find mine. So if Tom is tested they may just think hes a carrier if they find 508 and nothing else. Does not bear thinking about.
We have told Tom if he has to go to hospital for tests we will go with him. Lets hope it does not come to that.
What ever else we wont be telling Jen and Ash. That will give them another reason for constantly ringing him. Especially as Ash had bowel cancer. What next.
My hand has been playing up again. I'm sure its because i haven't taken my tablets properly recently. I never bothered after Mikey went into hospital and it was doing well before that. Stupid, stupid woman that i was to fall and break my wrist in January.Its so tight that its a problem clenching my fist, so back to exercising it i suppose.
My whole body aches tonight, i suppose that's because we stood for so long today! No jogging tonight i think!! Tim said ' i knew it wouldn't last' that's what Mikey said about my swimming when i went to see him on the 10th. There he sat with his nippy on making swimming motions with his arms because he couldn't talk to us! He said a few things and wrote the rest down! He said he felt marvellous on the nippy.
I wish he was still here. I wish we had had the chance to tell him all the things we hadn't said. Asked him questions that will never be answered.
We always respected his privacy and Mikey would always tell us what he wanted us to know.
Early this year he told us about Jason and Claire and we could see how low he was at that time. He stayed with us when Claire went on holiday with her friend and we could see how lonely he was and how he missed her. I can see him now getting ready to collect them from the airport going far to early because he was eager for her to return Then the absolute change in him a few days later when he was re admitted to hospital. He then discussed his relationship with Claire, he told us that they had split up again and it was complicated. That they would remain friends and that Claire would help him through the transplant. We asked Mikey if he wanted to come home but he said no that they would continue to live together as friends. We never ever criticised Claire to him. Mikey would not have liked that at all as he loved her still. I wonder now if we should have pried, i know Jen felt we should and she wanted to know more about the situation.
The sadness because he never knew when she would visit, then the phone call to say don't come because Claire's coming. We never went when Claire visited because we knew how much he loved the time they had alone together.
Don't dwell Sue it does no good at all, i haven't even looked at the good times. That's because i cant. Not yet anyway.
Well it think that's enough for today. It does help Mikey to offload to this blog. Thank you.
So tomorrow is yet another day.
We set off today by train as Tim thought it would be less stressful. Absolutely not but that's for later!
We met Tom at Doncaster, he picked us up at the station and we headed for Meadow Hall in Sheffield we thought we would have a look around and have a meal. Tom has a large dog at home and he is not good with strangers. That's what we are to him. Anyway dogs and me are not a good combination as i am terrified of them.
Toms car is lovely although getting out for me was a little odd. More of that later.
We arrived at Meadow Hall and all seemed well. We looked for somewhere to eat Tom said he really fancied a Harry Ramsdens.
Tom was eating when he said he didn't feel well. Tom was as white as a sheet and had beads of perspiration on his forehead. Tom said he had a really bad pain in his stomach and he had been having episodes like this for a few months. Sometimes much worse than this. Tom said he thought it was because of his poor diet as it got better when he ate properly. Tom then told us that he also had problems with going to the loo properly bouts of diarrhoea and not being able to go. Alarm bells were ringing wholesale when he said that he also passed blood. Tom couldn't continue eating so we took him outside for a while. We then said he had to go to the Dr's. We went back to Doncaster and his surgery.
The surgery was closed for lunch!! So we went to a local service station and waited till they opened.
Tom managed to phone them and got an appointment for 5.30pm.
It was now 2.30pm.
We went back to Doncaster and had a quick look at the shops, Tom bought some DVDs to watch as he doesn't go out at all. He has no social life and must be incredibly lonely by himself. I really wish he could come home. Anyway he said he wanted a shower before he went to the Dr's, so we came home although we really didn't want to.
We thought w would be home by the time he had been to the Dr's and if he needed us to we would return.
The train left on time at 4pm and we should have been home by 5.30pm. Oh no nothing as simple as that. First off there were no seats so we stood in the doorway, we didn't mind as we knew the train was direct to Peterborough so about 45 Min's. Sadly some rotten beggars had vandalised the track at Newark. They had stolen the copper wires to the signals which resulted in a delay. We were standing for 3 hours!!!!
Tom phoned us expecting us to be home but we were only 15 Min's out of Doncaster.
The Dr was very good apparently and gave him a good examination, he didn't think it was anything too sinister. The Dr thinks it maybe Colitis, an inflammation of the bowel or IBS but not sure. He also said that he could see that his brother had Cf and asked how he was. Tom told him and the Dr feels Tom should be tested for that. Tom was unsure if he had been tested in the past. Gut problems are common with CF. Tom said well he couldn't have it hes smoked for some time!!. Tom does get very bad asthma and had a rotten time recently with his chest and had to take time off work. Please don't let it be that!!!!
I know some people didn't even know they had CF until they were quite an age because they had no symptoms early in there life. Tim i know is 508 but they couldn't find mine. So if Tom is tested they may just think hes a carrier if they find 508 and nothing else. Does not bear thinking about.
We have told Tom if he has to go to hospital for tests we will go with him. Lets hope it does not come to that.
What ever else we wont be telling Jen and Ash. That will give them another reason for constantly ringing him. Especially as Ash had bowel cancer. What next.
My hand has been playing up again. I'm sure its because i haven't taken my tablets properly recently. I never bothered after Mikey went into hospital and it was doing well before that. Stupid, stupid woman that i was to fall and break my wrist in January.Its so tight that its a problem clenching my fist, so back to exercising it i suppose.
My whole body aches tonight, i suppose that's because we stood for so long today! No jogging tonight i think!! Tim said ' i knew it wouldn't last' that's what Mikey said about my swimming when i went to see him on the 10th. There he sat with his nippy on making swimming motions with his arms because he couldn't talk to us! He said a few things and wrote the rest down! He said he felt marvellous on the nippy.
I wish he was still here. I wish we had had the chance to tell him all the things we hadn't said. Asked him questions that will never be answered.
We always respected his privacy and Mikey would always tell us what he wanted us to know.
Early this year he told us about Jason and Claire and we could see how low he was at that time. He stayed with us when Claire went on holiday with her friend and we could see how lonely he was and how he missed her. I can see him now getting ready to collect them from the airport going far to early because he was eager for her to return Then the absolute change in him a few days later when he was re admitted to hospital. He then discussed his relationship with Claire, he told us that they had split up again and it was complicated. That they would remain friends and that Claire would help him through the transplant. We asked Mikey if he wanted to come home but he said no that they would continue to live together as friends. We never ever criticised Claire to him. Mikey would not have liked that at all as he loved her still. I wonder now if we should have pried, i know Jen felt we should and she wanted to know more about the situation.
The sadness because he never knew when she would visit, then the phone call to say don't come because Claire's coming. We never went when Claire visited because we knew how much he loved the time they had alone together.
Don't dwell Sue it does no good at all, i haven't even looked at the good times. That's because i cant. Not yet anyway.
Well it think that's enough for today. It does help Mikey to offload to this blog. Thank you.
So tomorrow is yet another day.
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