Its 4 weeks today since we lost Mikey and it really hasn't sunk in yet. I think I'm just going to imagine hes on a very long holiday and I'm not going to see him for a while. Tim said he is just thinking of him as being asleep.
Is this coping? i wonder? or will we have to face reality in the future. Maybe but that will be our decision at the end of the day.
CF grrrrrrrrr its such a cruel illness and takes so many incredible brave young people. We breathe without thinking don't we. What must it be like to struggle constantly for breath to live in such discomfort. It is only now that we are even analysing this.
We are going to Doncaster tomorrow to see Tom, he was so very angry yesterday i hope he is feeling a little better.
Just looked at some photos when he was baby he was such a good baby!! He remained a good boy and a good man. We have been lucky with them both. I wish they were both here today but fit and healthy!
Mikey has always been positive and said he wouldn't have been who he was if he hadn't have had CF he would never have met Claire and had some wonderful times with her. I suppose i am selfish and wish he had been well.
We were talking tonight and really looked at our lives. Whilst we have no regrets we looked at the impact that CF has on a family. At the time you do the best you can and go through every day without thinking of what you are doing, learning and managing. Neither do you consciously think about how life is different for your child. Yet with deeper thought, we did, and we tried to make it easy as possible, but with the best will in the world we can now look back and cannot imagine how hard Mikeys life has been for him. We cant change the past but i hope we will be able to live the rest of our lives in a manner that would have made Mikey proud of us.
Tom i hope will reflect on his life and start to enjoy his time of and not waste time concerned of matters that have no consequence. I truly hope he does.
I still cant complete the rest of Tuesdays visit yet. I have to do that i need to do that but not today.....
Tim is bearing up so well and yet i still feel so sad for him i just wish i could give him the comfort he needs but i just don't know how. He has lost his buddy, his partner in crime. The person who would discuss Tottenham, cricket, athletics and films. He misses Mikeys sense of humour as they laughed at the same things. He really does miss Mikey so much. I am a poor substitute.
I know Tim misses Tom now more than ever and am pleased that Tom rings his Dad during the day and least they talk cars together!!!
I will try to contact Claire again tomorrow and let her know that their is a job coming up at Ringshill i doubt if she would be interested but at least I've tried.
Diana has gone away to Sri Lanka for holidays so i will miss her little messages. Gosh how important friends are.
Joni bless her has found a support group on line for us and has been so very very supportive and either messages each day or chats on line she has been wonderful, and she is keeping in touch with Tom and he is responding which is again really good and unusual for him. I think he needs friends.
Well i better close for now, got to get up early to catch a train to Doncaster in the morning.
Thursday, 9 September 2010
Wednesday, 8 September 2010
DAY 12
How interesting that i contacted the CF trust to ask if they had a counselling service for parents like us and as yet have had no reply! I expect that it does not help their campaign as they look at promoting research and helping new families etc. Its not good PR to spend time and money on those that have gone.
Angie one of the CF specialist nurses have said there is a lady who would speak to me if i wished she lost her son in similar circumstances. I said perhaps we should start a support group!. The consultant thought that would actually be a very good idea as there really is nothing for us.
I coped a little better at work today i think and i managed to come home at lunch time. Tim had made soup and i have to say it was very good. It is giving Tim something to do and breaks his day up a little.
We are still receiving cards and today we had one from my cousins in France. How nice was that. Yet close family of Tim cannot even pick up the phone. His brother has not contacted him at all and his sister, well i think she has gone ever so slightly mad. In the words of Queen shes only knitting on one needle.
Tom rang tonight and hes looking forward to us going on Friday. He is angry and feels the health service let Mikey down. That he should have been referred for a transplant when he was 20 and fairly well. Why do they have to wait until he is so poorly and there is such a risk that a pair of lungs will not be found in time anyway. Tom also felt that it really hasn't sunk in yet. I agreed with him and was able to discuss the things his consultant had told me. I think that really upset Tom rather than help but we will see how he is on Friday.
Tom is also really upset with Jen and Ash and said that they told him that they thought of him as their son as well. Tom said a couple of holidays and one night of sleeping at theirs in his whole life cannot equate to being a parent.
Parents take you swimming, cubs and watch football, help with homework and look after you, they did none of those things. They cannot possible know what it feels like to be a mum or a dad.
Jen and ash apparently said that they have had to tiptoe round me for years!!! Yet again a most bizarre comment one Tim could not understand when she said that yesterday. Tom feels that they are now looking for someone to blame because they will not accept that they are in the wrong. I told Tom to stop wasting any time over it i certainly cannot and will not consider there actions. What a shame that not only have they lost a nephew in Mikey but they have now lost a brother, sister in law and another nephew. They have lost an entire family through their own actions.
I was going to write about the rest of the consultants conversation yesterday but i found writing it extremely hard so i will try tomorrow. I think it is important that i do, it will enable me to look back in the future to see if we have moved on. That is something we have to do no matter how difficult otherwise we will have lost 4 lives to CF not one.
I do hope Tom finds someone to keep him company.
Well tomorrow is another day............
Angie one of the CF specialist nurses have said there is a lady who would speak to me if i wished she lost her son in similar circumstances. I said perhaps we should start a support group!. The consultant thought that would actually be a very good idea as there really is nothing for us.
I coped a little better at work today i think and i managed to come home at lunch time. Tim had made soup and i have to say it was very good. It is giving Tim something to do and breaks his day up a little.
We are still receiving cards and today we had one from my cousins in France. How nice was that. Yet close family of Tim cannot even pick up the phone. His brother has not contacted him at all and his sister, well i think she has gone ever so slightly mad. In the words of Queen shes only knitting on one needle.
Tom rang tonight and hes looking forward to us going on Friday. He is angry and feels the health service let Mikey down. That he should have been referred for a transplant when he was 20 and fairly well. Why do they have to wait until he is so poorly and there is such a risk that a pair of lungs will not be found in time anyway. Tom also felt that it really hasn't sunk in yet. I agreed with him and was able to discuss the things his consultant had told me. I think that really upset Tom rather than help but we will see how he is on Friday.
Tom is also really upset with Jen and Ash and said that they told him that they thought of him as their son as well. Tom said a couple of holidays and one night of sleeping at theirs in his whole life cannot equate to being a parent.
Parents take you swimming, cubs and watch football, help with homework and look after you, they did none of those things. They cannot possible know what it feels like to be a mum or a dad.
Jen and ash apparently said that they have had to tiptoe round me for years!!! Yet again a most bizarre comment one Tim could not understand when she said that yesterday. Tom feels that they are now looking for someone to blame because they will not accept that they are in the wrong. I told Tom to stop wasting any time over it i certainly cannot and will not consider there actions. What a shame that not only have they lost a nephew in Mikey but they have now lost a brother, sister in law and another nephew. They have lost an entire family through their own actions.
I was going to write about the rest of the consultants conversation yesterday but i found writing it extremely hard so i will try tomorrow. I think it is important that i do, it will enable me to look back in the future to see if we have moved on. That is something we have to do no matter how difficult otherwise we will have lost 4 lives to CF not one.
I do hope Tom finds someone to keep him company.
Well tomorrow is another day............
Tuesday, 7 September 2010
Day 11
Could not concentrate today because i knew i had the appointment with Mikeys consultant today.
So the morning passed in a haze and i went home at lunch time to find Tim had cooked lunch again.
I asked if he had heard from anyone today. Tim said his sister had phoned him and said it doesn't get any better does it. Tim asked her what she meant and she said well about Mikey she thinks of him in the morning and before she goes to bed. Tim said well he hoped things would improve as time passes and Jen said it wouldn't, Tim said how do you know that and Jen said through experience!!!. Tim said he just felt totally bemused by her insensitivity and then let her ramble on about trivial things and wasn't really listening. I asked Tim if it was nice for him that she had made contact and he said not really, she spoke about Tom and him but never once asked how i was. I told Tim it didn't matter at all but he should keep any door open to communicate. I hope that relationship improves.
We go to Papworth. The closer we get the more teary i get. Tim said it felt just as though we were going to visit Mikey.
Tim stayed in the car as he didn't want to go in. Once through the door and heading for the CF unit it became very hard and i wasn't sure if i could do this. Still i met with Mikeys physio who was very kind and said she would find Sister Carolyn. Angie Lyons came round the corner and just hugged me and to think she was the first nurse we met when Mikey went to Papworth and she went with him on the day he died how bizarre is that. Angie asked where Tim was and i told her and she said she would go and see him and have a chat
Do you know im not sure i can write anymore i will have a minute and then try.......
Helen Mikey consultant was incredible the compassion just oozed from her, she spoke to me with such genuine care and concern it was heart warming, she eased my soul. How can one person do that does she know what amazing gift she has and how does she do this time and time again?
I was firstly reassured that Michael was very very aware of the risks regarding the possible outcomes of the operation. This is going to be muddled but reader bear with me because im just writing as i try to recall what was said.
I asked why we hadn't recognised that he was so ill and how we had normalised his situation. I was told we are not the only parents who have said this because the type of person Michael was he kept things to himself not only to protect us but in order for him to cope. He was making some very courageous decisions about his health and could not deal with seeing his family upset as well. The fact that we treated him normally in fact probably reassured him that things would go well.
Michael was very poorly but even they did not know just how bad his lungs were it was only the result of the operation that demonstrated this. Helen said all they can really do was to make guesses and this would also bring about a degree of risk. I asked why Papworth turned him down. Helen said they make their decisions on who would benifit the most from the lungs donated and they have to chose those who have the best chance. They felt that Mikey would not be able to breathe unaided if he had surgery and the donated lungs would be lost as well. The fact that he had such large kidney stones and could lead to renal failure and complete organ failure was another risk they were not prepared to take.
I asked about Newcastle and why they told Mikey that they usually see patients worse than he was but that was only in March and now he passed away 5 months later.
Helen said there was such a delay in getting Mikey up to Newcastle for the assessment and that they had been really positive about his general condition particularly the SMA to make sure that Newcastle would see him. There was no way that Mikey could have a transplant unless the kidney stones were done, so he had no choice it was risk the stones being taken out or accepting that he would not have a transplant. Helen said Mikey was so desperate to have a normal life that as a team they had a duty to ensure they did every thing they could to help him achieve that.
The delay from Peterborough and getting there decision also delayed things and his condition was getting much worse.
When they contacted Addenbrookes they were lucky that things got sorted quickly, however there was a great deal of discussions regarding the possible outcomes and what was best for Mikey. It had been decided that IF it was possible to remove the two smaller stones and Mikey tolerated the anaesthetic they would go for the big one. The equipment used to go urethrally may not have been sufficient to reach the large one and they would risk turning him and surgically remove that one as well because there was no way he would cope with two anaesthetics. If this was not done Mikey would still not have been able to have the transplant.
Mikey had the anaesthetic and was put to sleep, this went well he was put on a gentle respirator and this went well initially things than started to change his lungs would not allow the air to go in and they felt that his lung had collapsed they tried various medication to try and stabilise him and a change of ventilator all with no success. His blood gases at this time was 24 and normal blood gases are 4 so at this stage Mikey was already critically ill with little hope of recovery, he was taken for a scan which showed his right lung had completely deflated. Normally an area of lung is affected but to inflate the lung would have been impossible due to the area they would need to put a drain in.
Helen said Mikael was asleep and unaware of any of this. When he struggled in intensive care and he gripped my hand and i thought he was trying to get up it was in fact a seizure and or an involuntary action due to the carbon dioxide toxicity. When blood gases are at 9 the person is already very very sleepy so at 24 the chances and definite probability was that Mikey was in a coma at that time. How ever being on the respirator was very distressing because the air just could not get into his lungs and this is why it was much better for Michael when he was taken off and he did in fact breathe normally for some time. He would have managed to come off the respirator had he have got onto have a transplant. That was sad to hear.
I asked if i had stopped him being woken up because He had said that if things went badly he wanted to woken at any cost to him to say his goodbyes to us. Helen said no that was not an option he would have been in so much distress and they would not have been able to inflate the lung he would have known he was dying and that there was no hope everything would have been for nothing. BUT he couldn't have been woken because of his carbon dioxide levels were too high.
It was now they realised just how bad his lungs were and that Mikey would not have survived CF for many more weeks if had nowt had the operation.
I will explain about his lung collapses and what would have happened had he not gone to sleep and passed away tomorrow its just too much tonight.
So the morning passed in a haze and i went home at lunch time to find Tim had cooked lunch again.
I asked if he had heard from anyone today. Tim said his sister had phoned him and said it doesn't get any better does it. Tim asked her what she meant and she said well about Mikey she thinks of him in the morning and before she goes to bed. Tim said well he hoped things would improve as time passes and Jen said it wouldn't, Tim said how do you know that and Jen said through experience!!!. Tim said he just felt totally bemused by her insensitivity and then let her ramble on about trivial things and wasn't really listening. I asked Tim if it was nice for him that she had made contact and he said not really, she spoke about Tom and him but never once asked how i was. I told Tim it didn't matter at all but he should keep any door open to communicate. I hope that relationship improves.
We go to Papworth. The closer we get the more teary i get. Tim said it felt just as though we were going to visit Mikey.
Tim stayed in the car as he didn't want to go in. Once through the door and heading for the CF unit it became very hard and i wasn't sure if i could do this. Still i met with Mikeys physio who was very kind and said she would find Sister Carolyn. Angie Lyons came round the corner and just hugged me and to think she was the first nurse we met when Mikey went to Papworth and she went with him on the day he died how bizarre is that. Angie asked where Tim was and i told her and she said she would go and see him and have a chat
Do you know im not sure i can write anymore i will have a minute and then try.......
Helen Mikey consultant was incredible the compassion just oozed from her, she spoke to me with such genuine care and concern it was heart warming, she eased my soul. How can one person do that does she know what amazing gift she has and how does she do this time and time again?
I was firstly reassured that Michael was very very aware of the risks regarding the possible outcomes of the operation. This is going to be muddled but reader bear with me because im just writing as i try to recall what was said.
I asked why we hadn't recognised that he was so ill and how we had normalised his situation. I was told we are not the only parents who have said this because the type of person Michael was he kept things to himself not only to protect us but in order for him to cope. He was making some very courageous decisions about his health and could not deal with seeing his family upset as well. The fact that we treated him normally in fact probably reassured him that things would go well.
Michael was very poorly but even they did not know just how bad his lungs were it was only the result of the operation that demonstrated this. Helen said all they can really do was to make guesses and this would also bring about a degree of risk. I asked why Papworth turned him down. Helen said they make their decisions on who would benifit the most from the lungs donated and they have to chose those who have the best chance. They felt that Mikey would not be able to breathe unaided if he had surgery and the donated lungs would be lost as well. The fact that he had such large kidney stones and could lead to renal failure and complete organ failure was another risk they were not prepared to take.
I asked about Newcastle and why they told Mikey that they usually see patients worse than he was but that was only in March and now he passed away 5 months later.
Helen said there was such a delay in getting Mikey up to Newcastle for the assessment and that they had been really positive about his general condition particularly the SMA to make sure that Newcastle would see him. There was no way that Mikey could have a transplant unless the kidney stones were done, so he had no choice it was risk the stones being taken out or accepting that he would not have a transplant. Helen said Mikey was so desperate to have a normal life that as a team they had a duty to ensure they did every thing they could to help him achieve that.
The delay from Peterborough and getting there decision also delayed things and his condition was getting much worse.
When they contacted Addenbrookes they were lucky that things got sorted quickly, however there was a great deal of discussions regarding the possible outcomes and what was best for Mikey. It had been decided that IF it was possible to remove the two smaller stones and Mikey tolerated the anaesthetic they would go for the big one. The equipment used to go urethrally may not have been sufficient to reach the large one and they would risk turning him and surgically remove that one as well because there was no way he would cope with two anaesthetics. If this was not done Mikey would still not have been able to have the transplant.
Mikey had the anaesthetic and was put to sleep, this went well he was put on a gentle respirator and this went well initially things than started to change his lungs would not allow the air to go in and they felt that his lung had collapsed they tried various medication to try and stabilise him and a change of ventilator all with no success. His blood gases at this time was 24 and normal blood gases are 4 so at this stage Mikey was already critically ill with little hope of recovery, he was taken for a scan which showed his right lung had completely deflated. Normally an area of lung is affected but to inflate the lung would have been impossible due to the area they would need to put a drain in.
Helen said Mikael was asleep and unaware of any of this. When he struggled in intensive care and he gripped my hand and i thought he was trying to get up it was in fact a seizure and or an involuntary action due to the carbon dioxide toxicity. When blood gases are at 9 the person is already very very sleepy so at 24 the chances and definite probability was that Mikey was in a coma at that time. How ever being on the respirator was very distressing because the air just could not get into his lungs and this is why it was much better for Michael when he was taken off and he did in fact breathe normally for some time. He would have managed to come off the respirator had he have got onto have a transplant. That was sad to hear.
I asked if i had stopped him being woken up because He had said that if things went badly he wanted to woken at any cost to him to say his goodbyes to us. Helen said no that was not an option he would have been in so much distress and they would not have been able to inflate the lung he would have known he was dying and that there was no hope everything would have been for nothing. BUT he couldn't have been woken because of his carbon dioxide levels were too high.
It was now they realised just how bad his lungs were and that Mikey would not have survived CF for many more weeks if had nowt had the operation.
I will explain about his lung collapses and what would have happened had he not gone to sleep and passed away tomorrow its just too much tonight.
Monday, 6 September 2010
Day 10
I really wish there was some forum for people like me. Parents of a CF child/adult who has lost the battle against CF. I have looked on the CF trust site and where parents can make comments its mostly new mums or mums of younger children and these parents still have hope for the future. Who am I to spoil their dreams and visions.
It's so very hard to get through the days. Tim spends so much time on his own which gives him little else to do but think of Michael. That's not a bad thing is it? but it just hurts him so. I am watching a vibrant man in his mid fifties slip slowly away and becoming an old man. Mikey would not want that, and Tim knows it but his grief is manifesting itself by accelerating the ageing process.
I'm worried that he has been getting these really bad heads again only now his speech is difficult to get out at these times and he wont go to the Dr's. Tim has said that he thinks he will be next and believes that he is ill but doesn't care. He misses Mikey more than words can say. I came home for lunch today and he was so pleased to see me. Tim said it gave him something to do cooking at midday so i will try to come home every day now.
I'm going to see Mikeys consultant tomorrow. I will ask questions that i probably don't want the answers to, but i know if i don't ask then i will regret it later. I am very anxious. Tim said he thinks he can cope by just thinking that Mikey fell asleep and that hes not suffering any more.
How did Mikey become so ill and we not fully comprehend what was happening. We knew he was ill but just did not think that he was at the stage he was at. Why? Why did we not accept it. We knew and have known for many years that this would happen. Was it the circumstances of his death? was it that we thought we would be told one day Mikey is really ill and you need to spend as much time as possible with him. Were we thinking that some film like plot would occur where we could gather the family talk it through with Mikey and each other and have x number of weeks to get used to it. Maybe we did. God knows we cant make any sense of it. We wondered today if we have actually accepted that Mikey has passed away and we will never see him again. I don't think we have. We are going through the motions we are upset we are lost but we don't really want to accept that. I m rambling and surely repeating myself. Who cares this is my page, my feelings. I feel like one of those women who tear at their clothes, pull their hair out and wail. That's what i am doing whilst showing the world a functioning person. But that hidden woman is the real me.
What would Mikey think of this if he could read it? 'Mother' he would say 'what a load of rubbish, get on with life, there is nothing else you can do for me except live.' Oh Mikey i know that but you did say we could grieve for a while didn't you.
I may just make contact with the lady from CF magazine and ask her where we can get help from, at the moment i cannot talk about it out loud but i can do this. You were right Mikey writing about your problems is therapeutic and it does help.
I'm not so angry today but i expect that will change. I need someone anyone to blame. I know that's not right. You had CF, no ones fault, just bloody unlucky but that really does not help. I want to go out and punch someone, whack them over the head, beat them senseless and drag them up onto their feet and ask them why and then do it all again. Who are these imaginary people, they have no faces, no form, no essence of humanity but they seem so real these wicked, wicked imaginary beings who robbed me of you.
Tim's in bed trying to sleep and here i sit again. Well i better go and do some walking otherwise i wont be fit for the 2012 Marathon that i want to do.
We will see what tomorrow brings. It is after all another day.........
It's so very hard to get through the days. Tim spends so much time on his own which gives him little else to do but think of Michael. That's not a bad thing is it? but it just hurts him so. I am watching a vibrant man in his mid fifties slip slowly away and becoming an old man. Mikey would not want that, and Tim knows it but his grief is manifesting itself by accelerating the ageing process.
I'm worried that he has been getting these really bad heads again only now his speech is difficult to get out at these times and he wont go to the Dr's. Tim has said that he thinks he will be next and believes that he is ill but doesn't care. He misses Mikey more than words can say. I came home for lunch today and he was so pleased to see me. Tim said it gave him something to do cooking at midday so i will try to come home every day now.
I'm going to see Mikeys consultant tomorrow. I will ask questions that i probably don't want the answers to, but i know if i don't ask then i will regret it later. I am very anxious. Tim said he thinks he can cope by just thinking that Mikey fell asleep and that hes not suffering any more.
How did Mikey become so ill and we not fully comprehend what was happening. We knew he was ill but just did not think that he was at the stage he was at. Why? Why did we not accept it. We knew and have known for many years that this would happen. Was it the circumstances of his death? was it that we thought we would be told one day Mikey is really ill and you need to spend as much time as possible with him. Were we thinking that some film like plot would occur where we could gather the family talk it through with Mikey and each other and have x number of weeks to get used to it. Maybe we did. God knows we cant make any sense of it. We wondered today if we have actually accepted that Mikey has passed away and we will never see him again. I don't think we have. We are going through the motions we are upset we are lost but we don't really want to accept that. I m rambling and surely repeating myself. Who cares this is my page, my feelings. I feel like one of those women who tear at their clothes, pull their hair out and wail. That's what i am doing whilst showing the world a functioning person. But that hidden woman is the real me.
What would Mikey think of this if he could read it? 'Mother' he would say 'what a load of rubbish, get on with life, there is nothing else you can do for me except live.' Oh Mikey i know that but you did say we could grieve for a while didn't you.
I may just make contact with the lady from CF magazine and ask her where we can get help from, at the moment i cannot talk about it out loud but i can do this. You were right Mikey writing about your problems is therapeutic and it does help.
I'm not so angry today but i expect that will change. I need someone anyone to blame. I know that's not right. You had CF, no ones fault, just bloody unlucky but that really does not help. I want to go out and punch someone, whack them over the head, beat them senseless and drag them up onto their feet and ask them why and then do it all again. Who are these imaginary people, they have no faces, no form, no essence of humanity but they seem so real these wicked, wicked imaginary beings who robbed me of you.
Tim's in bed trying to sleep and here i sit again. Well i better go and do some walking otherwise i wont be fit for the 2012 Marathon that i want to do.
We will see what tomorrow brings. It is after all another day.........
Sunday, 5 September 2010
Day 9
We went for a walk this morning and ended up walking for 10 miles and it took us 3 hours but it passed the morning away.
Went to see Joni who just listened to me get things off my chest, she is a balm to any wounded soul. I love her to pieces.
Went out for a ride in the MX5 and had a good walk in Thetford it was a nice evening.
Tonight i locked my self in the bathroom and sobbed. Nothing in particular set me off. I just got this awful sensation when you know that you are facing an unpleasant thought and you don't want to.
I just cannot accept that we wont see Michael again.
Tom phoned tonight and said Ashley was pregnant obviously with the chap she is living with. How sad for Tom knowing you are still married to a woman and she is having another mans child. The reason she left Tom was to have a life and a bit of fun. Well it looks her days are numbered now because she will now have x number of years not being able to do anything. Still that's her choice. Mikey always said that's what she will do get pregnant and have no future.
i have tried to contact Claire again without success. Still i expect shes wondering why we are bothering now when we didn't before. Well i suppose when she left Michael last year we felt so upset for him. That was the only time we ever heard Michael say he wished he was dead. It was certainly a time when we noticed that his health declined. He was so happy later that year when he said they were trying again. Then at the beginning of the year he was so down because she was spending so much time with Jason who was having a transplant even though Mikey was not well himself. We know he was taken ill one weekend but Claire wasn't there at the time and Mike had a lung collapse again. Then Claire went on holiday with Claire and Mikey stayed with us and he was getting lots of texts from Claire saying she was having a good time and she couldn't remember what she had done the night before. You could see how upset Mikey was. He was so desperate for her to come home and went to Stanstead early to wait for her and he didn't look well then. He was back in hospital very soon after and when we visited he was so very low, he told us that Claire and he had split again. Mikey later put on facebook that he was single. At the end of June Mikey told us that they were going to continue living together but just as friends and that Claire would be his carer. Mikey was asking for anti depressants and having counselling again.
In July he was very very low in mood and sleeping such a lot and said he didn't know when Claire would be visiting. In fact even up to his hospital visit to Addenbrookes he didn't know when she would come up and he missed her so. But that week end Claire was out camping at Peterborough and he saw on facebook that she had woken up in a tent with a hangover and he was facing the fact that he may not be alive later that week. How the hell did he come to terms with that. But he loved her, god knows he loved her so much. We have never passed judgement on the situation and never pried although we know Jen and Ash did. Mikey called Jen 20 questions!!
Well on that happy note I'm off jogging.
Tomorrow is another day......
Went to see Joni who just listened to me get things off my chest, she is a balm to any wounded soul. I love her to pieces.
Went out for a ride in the MX5 and had a good walk in Thetford it was a nice evening.
Tonight i locked my self in the bathroom and sobbed. Nothing in particular set me off. I just got this awful sensation when you know that you are facing an unpleasant thought and you don't want to.
I just cannot accept that we wont see Michael again.
Tom phoned tonight and said Ashley was pregnant obviously with the chap she is living with. How sad for Tom knowing you are still married to a woman and she is having another mans child. The reason she left Tom was to have a life and a bit of fun. Well it looks her days are numbered now because she will now have x number of years not being able to do anything. Still that's her choice. Mikey always said that's what she will do get pregnant and have no future.
i have tried to contact Claire again without success. Still i expect shes wondering why we are bothering now when we didn't before. Well i suppose when she left Michael last year we felt so upset for him. That was the only time we ever heard Michael say he wished he was dead. It was certainly a time when we noticed that his health declined. He was so happy later that year when he said they were trying again. Then at the beginning of the year he was so down because she was spending so much time with Jason who was having a transplant even though Mikey was not well himself. We know he was taken ill one weekend but Claire wasn't there at the time and Mike had a lung collapse again. Then Claire went on holiday with Claire and Mikey stayed with us and he was getting lots of texts from Claire saying she was having a good time and she couldn't remember what she had done the night before. You could see how upset Mikey was. He was so desperate for her to come home and went to Stanstead early to wait for her and he didn't look well then. He was back in hospital very soon after and when we visited he was so very low, he told us that Claire and he had split again. Mikey later put on facebook that he was single. At the end of June Mikey told us that they were going to continue living together but just as friends and that Claire would be his carer. Mikey was asking for anti depressants and having counselling again.
In July he was very very low in mood and sleeping such a lot and said he didn't know when Claire would be visiting. In fact even up to his hospital visit to Addenbrookes he didn't know when she would come up and he missed her so. But that week end Claire was out camping at Peterborough and he saw on facebook that she had woken up in a tent with a hangover and he was facing the fact that he may not be alive later that week. How the hell did he come to terms with that. But he loved her, god knows he loved her so much. We have never passed judgement on the situation and never pried although we know Jen and Ash did. Mikey called Jen 20 questions!!
Well on that happy note I'm off jogging.
Tomorrow is another day......
Saturday, 4 September 2010
Day 8
I always feel better when i know I'm going to write something down and I don't know why. I look around at people and there lives are going on and yet I know that behind one of those doors I passed today someone is probably feeling a little like me.
Me and my computer are having a good relationship I sit in front of it for hours really expecting a pop up from Mikey or to read a post he has put on. I miss that.
We sat at home waiting to visit as we usually do so what did we do instead, go and buy a car. Was that a decision we will regret later. No probably not. We had been thinking of it for some time and we had even made Mikey laugh because i got into a muddle with the name of the car. Oh well now there is a surprise!
I still cant get the vision of Mikey sitting in that hospital bed just before they wheeled him out of the room to go to theatre and he said ' i love you' and 'Claires coming with me down to theatre.' We said OK see you later and watched him be wheeled away. The next time we saw him he was being wheeled along the corridor in a hurry surrounded by loads of people in scrubs and he was on a respirator. My heart bleeds and I'm crying again. I am so desperate to remember the good times and i cant.
Tim's in bed asleep and I'm just waiting, waiting to hear that everything has been a bad dream and I'm going to wake up except I'm not am i.
4 weeks ago today i was cutting his hair before he went back to Papworth it seems a life time ago and yet just minutes. I wonder how everyone else is coping but if not directly involved probably sad for a few minutes then back to normal.
We had more cards come yesterday and today we have been so grateful to think that others are thinking of us. No body knows what to say to us, that's hardly surprising I still want to avoid everyone and yet so desperately want to talk about Mikey.
Tims been so good but i don't think he knows how to make me feel better and i cant tell him because i don't know what to do with time. Time we shouldn't wish it away but.........
Ive walked and jogged a little for 3 miles today. 2 miles in 28 minutes and then i slowed down and did another mile. I think i need to start doing a little longer each week otherwise i will never be ready for 2012. That's my focus and I'm so glad i made the decision to do it. I just hope i get a place. If i have to get charity place with CF i have to raise at least £2000 in sponsorship.
I suppose i better try to get to bed and sleep.
Tomorrows another day...............
Me and my computer are having a good relationship I sit in front of it for hours really expecting a pop up from Mikey or to read a post he has put on. I miss that.
We sat at home waiting to visit as we usually do so what did we do instead, go and buy a car. Was that a decision we will regret later. No probably not. We had been thinking of it for some time and we had even made Mikey laugh because i got into a muddle with the name of the car. Oh well now there is a surprise!
I still cant get the vision of Mikey sitting in that hospital bed just before they wheeled him out of the room to go to theatre and he said ' i love you' and 'Claires coming with me down to theatre.' We said OK see you later and watched him be wheeled away. The next time we saw him he was being wheeled along the corridor in a hurry surrounded by loads of people in scrubs and he was on a respirator. My heart bleeds and I'm crying again. I am so desperate to remember the good times and i cant.
Tim's in bed asleep and I'm just waiting, waiting to hear that everything has been a bad dream and I'm going to wake up except I'm not am i.
4 weeks ago today i was cutting his hair before he went back to Papworth it seems a life time ago and yet just minutes. I wonder how everyone else is coping but if not directly involved probably sad for a few minutes then back to normal.
We had more cards come yesterday and today we have been so grateful to think that others are thinking of us. No body knows what to say to us, that's hardly surprising I still want to avoid everyone and yet so desperately want to talk about Mikey.
Tims been so good but i don't think he knows how to make me feel better and i cant tell him because i don't know what to do with time. Time we shouldn't wish it away but.........
Ive walked and jogged a little for 3 miles today. 2 miles in 28 minutes and then i slowed down and did another mile. I think i need to start doing a little longer each week otherwise i will never be ready for 2012. That's my focus and I'm so glad i made the decision to do it. I just hope i get a place. If i have to get charity place with CF i have to raise at least £2000 in sponsorship.
I suppose i better try to get to bed and sleep.
Tomorrows another day...............
Friday, 3 September 2010
day 7
Why is it that just when you think you have moved a step forward you find yourself a mile behind yesterday.
Time is a great healer they say my clock must be going backwards then.
I went into work this morning thinking i can cope with a few hours and everything went tits up basically. Here i am usually the most capable person reduced to mush. I just couldn't get a grip today. God am i going to be able to continue with nursing. My life has revolved around caring for someone or another and its gone. That edge has gone and I'm lost. I feel as if I'm a ship at sea and I've lost my rudder just riding a tempest, being battered and hammered by the winds, is there a haven in this storm. I think not.
Tim asked how work went and i said yeah everything is fine. Mikey always said he was fine and he clearly wasn't. Why oh why couldn't we face reality when he was alive. We just normalised everything. Am i beating myself up God only knows. Strange me using those terms when I'm a non believer isn't it.
A friend told me that the essence of a loved one who has passed lingers in this ether for 40 days to say his goodbyes, Mikey hasn't been to see me yet and its been 3 weeks now 22 days, where is he.
I had a dream last week that he was waiting for his Dad and when i said what about me he shook his head and said you cant come mum just dad, look after Tom, and held his hand out to his dad and Tim went with him, they were both smiling. Was it me worrying about Tim or is this some portent of the future. I really don't know.
Today Tim told me hes been getting really bad heads and that when he gets a sharp pain and when he tries to talk he stutters and cant get the words out and had i noticed. I hadn't noticed anything, is this anything to do with his brain hemorrhage? but he will now go to the Dr's so now I'm worrying about that.
Ive been on my treadmill tonight and my speed is improving so that's something all prepared for 2012!
Linda rang tonight and asked if Scott her son could partner me but this is something i really want to do myself for Mikey, i may change my mind later but not now, not now.
I wonder should i contact Maddie she said i could but i don't want to impose on her good nature.
Claire hasn't been on line yet so haven't managed to contact her today, but like us I'm sure she has her good and bad days. There is a lot for her to sort out. I hope she asks us if we would like something of Mikey's to remind us of him. Even if its an old t shirt i would be so so grateful to have something of his to hold and touch.
I don't think either of us will ever get over this.
Diane my manager has suggested counselling, maybe i will i don't know what for?
I just hope he wasn't lonely or unhappy personally i know he was desperate to have his transplant to have another chance of happiness with Claire. She will never in her lifetime experience such love from another human being. I wonder if she realises how very lucky she was, i don't know i don't think she did but she may just be realising that now. Who's to say.
I think we all take for life for granted and we shouldn't should we will i remember this. I have listened to LeAnn Rimes please remember tonight and if i had to chose record for Maddie from Mikey it would be that.
Time is a great healer they say my clock must be going backwards then.
I went into work this morning thinking i can cope with a few hours and everything went tits up basically. Here i am usually the most capable person reduced to mush. I just couldn't get a grip today. God am i going to be able to continue with nursing. My life has revolved around caring for someone or another and its gone. That edge has gone and I'm lost. I feel as if I'm a ship at sea and I've lost my rudder just riding a tempest, being battered and hammered by the winds, is there a haven in this storm. I think not.
Tim asked how work went and i said yeah everything is fine. Mikey always said he was fine and he clearly wasn't. Why oh why couldn't we face reality when he was alive. We just normalised everything. Am i beating myself up God only knows. Strange me using those terms when I'm a non believer isn't it.
A friend told me that the essence of a loved one who has passed lingers in this ether for 40 days to say his goodbyes, Mikey hasn't been to see me yet and its been 3 weeks now 22 days, where is he.
I had a dream last week that he was waiting for his Dad and when i said what about me he shook his head and said you cant come mum just dad, look after Tom, and held his hand out to his dad and Tim went with him, they were both smiling. Was it me worrying about Tim or is this some portent of the future. I really don't know.
Today Tim told me hes been getting really bad heads and that when he gets a sharp pain and when he tries to talk he stutters and cant get the words out and had i noticed. I hadn't noticed anything, is this anything to do with his brain hemorrhage? but he will now go to the Dr's so now I'm worrying about that.
Ive been on my treadmill tonight and my speed is improving so that's something all prepared for 2012!
Linda rang tonight and asked if Scott her son could partner me but this is something i really want to do myself for Mikey, i may change my mind later but not now, not now.
I wonder should i contact Maddie she said i could but i don't want to impose on her good nature.
Claire hasn't been on line yet so haven't managed to contact her today, but like us I'm sure she has her good and bad days. There is a lot for her to sort out. I hope she asks us if we would like something of Mikey's to remind us of him. Even if its an old t shirt i would be so so grateful to have something of his to hold and touch.
I don't think either of us will ever get over this.
Diane my manager has suggested counselling, maybe i will i don't know what for?
I just hope he wasn't lonely or unhappy personally i know he was desperate to have his transplant to have another chance of happiness with Claire. She will never in her lifetime experience such love from another human being. I wonder if she realises how very lucky she was, i don't know i don't think she did but she may just be realising that now. Who's to say.
I think we all take for life for granted and we shouldn't should we will i remember this. I have listened to LeAnn Rimes please remember tonight and if i had to chose record for Maddie from Mikey it would be that.
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