Wednesday, 28 September 2011
What I didn't say was that my wife has noticed that the speed and quietness with which I run to the loo makes her think that I am very much like an Aston Martin DB7. In case you are wondering I will be out a bit over the next couple of days so perhaps better wait until Saturday for the keys.
Today for some reason I really noticed how much I have slowed down of late. I have been told to keep exercising as the healthier I am going in for surgery the quicker my recovery should be. So my wife and I wander around Radlett at least once a day. However for me it's getting harder and harder as I seem to walk at snail's pace. This is so frustrating for me as I used to pride myself on being fairly fit and certainly able to keep pace with my wife on a walk.
As most of you will know it's Jewish New Year starting tonight and that for us means family time. One day with my wife's family and one day with mine and the star attraction on both days will be food. I am going to make it my goal that when this comes round next year I will be ready to eat with everyone else, this year though its TPN feed for me.
I think this waiting has had a real effect on all of us and it manifests itself in so many different ways. As I have told you my emotions go on a roller coaster every day making it extremely hard to concentrate on anything. I really think that it is now getting my wife down. She can't plan for anything and sometimes it feels like we are treading water during the day without actually getting anything done.
I would say that my health is slowly deteriorating which frustrates me all the time. On the outside I think that I look ok and you would never know but underneath the baggy clothes is a body fit for the bin. My stomach is so distended that I wonder if they will find twins in there when they open me up? I suppose if they did then at least that would be worth a few quid. I feel very lethargic as well and once I am slouched in my chair for the evening moving is more and more of an effort. The pain level also isn't great right now but the light at the end of the tunnel is definitely worth waiting for.
This all really does sound like a list of moans and groans and I don't really mean for it to be like that. Some days I can just brush things off and others its a lot easier just to spew out exactly what is going on. If you get bored then you can always fast forward my blog!
Right I am afraid I had better go now. Its time to get ready, put my make up on and go to my sister's.
Happy New Year and speak again very soon.
Tuesday, 27 September 2011
How my days pan out really depend on how the first hour of my day goes. Today was not one of the better starts to the day. Once I can be bothered to drag myself out of bed, usually around 6.45am its off to the loo as quickly as possible. I usually make it there just in time to chuck up what bit of fluid there is left in my stomach then I sit on the loo and well lets just say its not pleasant. Then the final party of the party piece is to drain excess fluid through my venting tube. Unfortunately this is getting blocked quite regularly and doesn't always work. So with both ends up to no good I usually continue to feel pretty sick for the first couple of hours. What remains with me for sometime is the constant burping up of what I can only describe as eggs. It tastes like eggs and smells like eggs so the sooner that I can get in to my "cow's costume - if you read my wife's blog you will understand why I mention cow) and shove some mint chewing gum in my mouth the better. Two hours later and two packets of wrigleys spearmint and I start to feel human. It has to be spearmint though. Double mint is too strong and juicy fruit, well that just loses its taste inside the first 30 seconds.
My early morning meds are a real struggle to get done. I am usually desperate for them, especially the anti sickness ones but feel pretty rotten whilst preparing them. Once they are in and I can flop back in to bed for another hour or so and then I can prepare to start my day.
What I haven't touched on for a while is the night time routine so let me enlighten you. I do my last set of meds around 10pm and again I can't wait to get them done and lie back in bed. Electric blanket is always put on so its nice and cosy. I don't exactly sound very manly do I but who cares I am nice and warm. We then watch a recorded episode of Cup Cake wars before switching off. I should add that my wife is usually asleep before the winner is announced so I watch by myself but have a conversation with her yet she doesn't respond. I am so used to her ignoring me or getting annoyed at my silly questions that I don't think anything of it when no conversation comes back the other way. The fact that she has actually fallen asleep should give you an indication of how stimulating my chats are.
Anyway usually by midnight I am up again as nature calls. You see over night I have 2.5 litres of liquid feed going in to my body intravenously and that causes me to pee a lot. My 2am I am up again and then around 4am the toilet calls again. Unfortunately the nature of my illness and especially the symptoms I am having now mean that I don't always get there in time. This becomes are real pain at 4am when I am having to wash myself down, find new pyjamas and climb back in to bed. And without waking up my darling wife. Usually I am quite good at this but occasionally I have been known to wake up with both of my legs in the same pyjama leg; or what is more common is that they are either inside out or the wrong way round. All of this makes it even more confusing when I next get up and for that split second can't remember what I did in the night.
My best sleep is always between about 4.30am and the 6.45am visit but now hopefully you can understand why I get knackered quite so easily. During bout of bad Crohns attacks I will often take extra tablets at night in the hope of avoiding any accidents or the need to rush to the loo. It is a common occurrence that I might need to take up to 12 imodium a day on top of all my other medication and still there is no guarantee that it works. Of course I avoid those tablets now as nothing helps since the intestine stopped working. It would be lovely if one day in the future I could take 1 tablet on a bad stomach day and know that it would be enough.
I just thought that I would share my nightly routine with you. Not sure if its all that interesting though. In actual fact I am not sure how interesting my blogs are becoming. I think my wife is beating me for humour and cynicism but then wives always do so many things better.
Ok supper has been called. That will mean my oldest and youngest arguing at the table. My daughter might go in to a strop and my middle child will eat his food the quickest and will be up and away from the table before my daughter has had one mouthful.
More tomorrow and oh by the way as my mobile is on 24/7 if you are up in the night and fancy a chat you know where to find me.
Monday, 26 September 2011
On the other hand I did experience the joys of being a parent to a stroppy teenager. For those of you who know me you are probably thinking what have the boys done now. Actually it was my 11 year old daughter who spent the whole afternoon being the most beautiful and angelic girl and then all of a sudden at dinner time a switch was flicked and she turned in to the devil child who went off in the strop of all strops. Ten minutes later she came down and it was as if nothing had happened. Now where does that all come from?
I think right now I probably feel more in limbo than I ever thought that I would. The trouble is the hospital said that it could happen at anytime so I guess in my mind I planned for it to happen almost instantly. Now I am 10 days on and half of me wants to get the call now and half of me is worried about receiving the call so I actually don't know what is worse. I spent most of today having either hot sweats or cold shivers. I have had that before and it usually occurs when my stomach is really up to no good so I am not to worried. I mean all of this is going to disappear in a few weeks, isn't it? This is the trouble in my head. I don't know how I am going to feel post op and that is scary. With all my other operations I have known the drill and how it all plays out. This time it's different.
I went on the UK transplant web site yesterday and they had very little info on bowel or intestinal transplants. It's when you see the actual statistics in black and white you realise that compared to so many other transplants this is really new and there have literally only been a handful of surgeries. On the plus side it means that the top surgeons are in my corner. The down side is that it's so new. Actually I shouldn't really be thinking about the down side because there aren't any, are there!!
Over the last couple of days its become clearer that despite the kids holding up brilliantly underneath it all they are very worried. Before they go to do any activity they often ask (especially my middle child) what will happen if you get the call while I am here, who will pick me up, will dad speak to me before you go? All these are natural concerns and they tend not to come out in one big discussion but to pop out at different times during the day. It must be so tough for them and I am really proud of how they are coping. I am not sure about how my wife is coping or even if she actually is. We tend not to talk about things when we are together. I guess we are not really sure what to say. We know its going to be hard but we will get through it. The one thing that I know is that I have married an incredible woman but however strong she appears on the outside I know that underneath it all she is as worried as me. Maybe we get through it together by not annalysing things too much. I think you can spend to long chatting it through. And that's from the bloke who blogs everyday about my feelings.
Right my wife has gone out to collect the boys from open evening so its time to get upstairs and have a bath. Now there is a luxury that I expect to go without for a little while. At the moment I am allowed the shallowest of baths just deep enough to get my bum wet but not deep enough for my tubes to get soaked. It's actually quite a comedy act watching me have a bath but don't worry I will spare you the pleasure. For the next few weeks I guess that I will have the benefit of bed baths!!! Deep joy. Never let it be said that people with Crohns retain their dignity. Your dignity goes right out the window the moment that first examination takes place.
Right I had better go. I could spend all night talking like this. You don't answer back, it's like talking to my dog waffle!!
Night night xxx
Sunday, 25 September 2011
There is nothing more stressful than watching your team play. We did eventually draw the game but should have won, had a penalty given against us that was never a penalty and had two not given for us both of which were blatant. So that sums up my Sunday afternoon.
Away from serious matters and back to my health. Well nothing has really changed on that front. For some stupid reason I just assume that I won't get called on the weekend. Everyone is at home with their families so why would I get a call? Of course the world doesn't stop and I have as much chance of receiving a call today as I do any other day.
Tonight we are out at a friend's bat mitzvah. Thankfully its very local and more of informal affair and once I had the nod that a good friend of mine is going in jeans I felt a great sigh of relief that I didn't have to dress up and could wear jeans too. In truth I am running out of clothes to wear. Trousers don't fit me all that well and tops are too tight so all my tubes show through. Even my son noticed it today. Never mind after the op I guess my body will shrink down to the muscular 6 pack frame that it was a few months ago. You don't remember? Must have very bad short term memory then.
Oh and while I am writing today I want to issue a formal apology to you all. I have been slated by my wife and sons for my terrible spelling mistakes and sometimes poor use of English. I just want you to know that its all down to the public school education I received. Had I gone to the local comp like my sister then I would have had perfect spelling and only write the queen's English. So apologies in advance for any future blunders.
I do feel that I have been waiting an awful long time when in reality it's only over a week. With everyday that goes by I know that the inevitable phone call is getting nearer and nearer. At the same time that makes me more and more nervous. I think I just need to get on with it but I know that it will come soon enough.
So apologies that today's blog is mainly dedicated to London's top side QPR, I will probably have more normal things to chat about tomorrow. Now I'm off to paint my nails, have a face pack and get ready to go out.
Saturday, 24 September 2011
We went to close friends this afternoon and just had a great chat. The time flew by but perhaps the best of it was that we all relaxed. We didn't talk about me and we just gossiped, laughed and joked and even reminisced on all those holiday stories and before we knew where we were it was nearly 7pm and time to put on my feed.
One of the things about being ill is that you sort of fall in to your illness routine. I take my drugs and the same time, I even set them up on the table the same way and I have the same annoying habits before I go to bed. I guess that all of this will change the moment that I get the call. It will be wonderful not have to inject myself 7 times when I wake up, at lunch time and then before I go to bed. It has been my life for so long its going to be very weird when it changes.
At the moment all I seem to be thinking about is how painful will it be when I wake up? How will I feel waking up and feeling a bag(stoma) attached to my tummy? At what stage will the pain subside and how will I feel when I have someone else's bowel inside me. I know it sounds stupid but will my appetite change? Will I start to like things that I used to hate and visa versa. That probably seems really stupid to you reading this but at the moment the idea of having someone else's body part inside me is, well weird and strange.
Then once I have got through all of that I have to get my life back on track and that's scary as well. I just think it will be a case of taking a deep breath and then jumping.
Sometimes I feel that my blog is a bit disjointed and I tend to repeat my feelings from one day to the next. The truth is I have those same feelings over and over so I may as well tell you that I do. So if it does mean that you have heard it all before then I'm sorry.
Ok right now I am watching Casualty, I am not sure why I am watching a programme about hospitals it must be the sick side of me. My stomach has been playing up all day and I feel very very sick right now. I can't take my meds until 10am so watching tv should take my mind off things and then the anti sickness drugs should get me through the night. Its a pretty crap way of existing right now but it's only short term. It doesn't feel short term when you have your head over a toilet bowel and you are chucking your guts up. Sorry maybe that was a bit too graphic but it's where I have found myself all too often over the last few weeks and months.
You know I am sitting here on the couch looking at my wife and kids around me and I know how lucky I am. They are brilliant, all of them. Even my wife although I am probably driving her mad at the moment. I know that they all probably think I am mad with all the things that I say and do during the day but the truth is I need to still feel that I am capable of pulling my weight in the family. What that really means is that I do what I think is best and the kids and my wife probably shrug their shoulders and quietly laugh at me as I muck up their routines. It will go back to normal when I am in Oxford. My wife will work out what to do and when and the kids will then do what they are supposed to do. Dad will come home and cock it up again but at least I do it with love.
Ok it's enough of the eulogising, Casualty is getting good so I really should watch it. The heroin clinic has been raided and and a woman has just found out that her mum has died and her uncle is really her dad. Got it, good.
It's bed shortly and I can't wait for those anti sickness drugs. Hopefully I will feel better in the morning. I doubt it but you never know. Sunday mornings are when I get a guilty feeling complex. My wife gets up at 7.30am to take my son to the stables and I do my meds and lie in bed. I really wish that I was doing the taxi service it's not fair that she has to get up so early especially as it's not a school day. Oh well at least I get to watch Match of the Day re run but it's not fair and I do feel very guilty.
Night night everyone, let's see what tonight brings....
Friday, 23 September 2011
I have been plagued all day by the fact that my venting peg, (the tube that comes out the side of my stomach) must have moved in the night and seems to be digging in to me just below the ribs. I have tried wiggling it about but I guess it needs a night sleep when it will move away as I toss and turn. This has happened to me before and does eventually sort itself out but whilst it is where it is the pain is pretty intense. Still only a little while to wait before the whole thing will be taken out. It needs to be removed as it keeps getting blocked up and must be on its last legs.
Aside from that my day has been pretty uneventful. I am noticing now that it is taking me longer to get going in the morning and by early evening I am knackered. Even my walking has slowed down something that I am not happy with as I keep having to tell my wife to slow down. Maybe she is telling me something and is actually trying to escape. I wouldn't blame her!!
I saw a friend for a coffee and chat which was good. It meant that I didn't have to talk about my health for a while which was very good.
It feels like we are in total limbo at the moment. The funniest is when people ask me if I have heard anything yet? Had I heard from the hospital I wouldn't be here to talk would I? If the hospital have called it means that that it's game on and I promise you I will let you know.
Without doubt this is one of the most stressful times of our lives at the moment. You try and relax when you go to bed but you can't because you might get woken up. You try and relax and do other things during the day but it always plays on your mind.
This is just a quick post today as its time to pick up the kids and soon its feeding time. Gosh that sounds like I am animal and its feeding time at the zoo. Tonight I think I will have salt beef and chips so that's what I will imagine that my white bag of tpn is. I had nachos last night with a lovely Krispy Kreme donut for dessert.
Have a good weekend and remember if the hospital calls I will tell you.
Thursday, 22 September 2011
Today the kids came home from school saying that every time they see the pastoral care teacher coming in to their classrooms they hold their breath as they assume it means that dad has gone in to hospital. I really feel for them, every day they don't know what is going to happen it must be so hard for them to focus on anything at the moment. I do though feel that we are blessed with incredible kids. For everything that is being chucked at them emotionally at the moment they just seem to get on with things. I know that somewhere inside their little heads is a little bit of turmoil and a bigger bit that is called "the fear of the unknown". I wish I could make their troubles go away but only time can do that. I just hope that by continually showing them love and affection that it will put their minds at ease.
To a degree the same goes with my wife. I know that she is finding each day extremely hard right now. Although I try and be a useful home help, in truth I probably get under her feet and she would love to tell me to go off to work and leave her alone. Honestly I wish I could and hopefully that day will come soon. During the day time seems to pass fairly quickly and when it comes to night time and we are ready to talk we are both completely shattered. In fact all we manage is to watch a quick episode of Cup cake wars before my wife's head hits the pillow and she is asleep.
It's just the not knowing that is hard for her and the kids. For me its actually the fear of what it is going to be like when I wake up after the op. Will I be in pain, how big will the scar be, what will it be like with a stoma and how long will recovery take? Again though it's the fear of the unknown. For all my other surgeries I have got used to how I am going to feel when I wake up, with this one I don't. never in my wildest dreams did I think that I would be having a transplant, that is something that happens to others and not me.
So as you can read life is a bit fraught at the moment. We are all living on egg shells and the slightest problem with the computer or the smallest piece of food that gets dropped on the floor and it erupts. I spoke to Oxford today and they explained that it really could happen at any time. As I am a very normal blood type with no anti bodies there are likely to be matches on a fairly regular basis. They explained that unlike someone who might have a very rare blood type and then they look for say a 95% match with me they will only accept 100% and that could mean that they reject some organs. They are pretty sure that I won't wait a month but no one can give any definitive promises.
So will tonight be the night? Who knows and I don't know why there is so much emphasis on the night. I guess that is because statistically they call more people at night due to car crashes etc.
I haven't really spoken about how I am going to feel having another person's organ in me. I'm not really sure. I think that it will be fine but who knows. I don't know if I want to find out who the donor was but what if they want to know about me? Do I owe it to them to tell them that its me and I am fine? I know all of this goes through Oxford so there is no direct contact but it is something that I think about quite a bit.
I have probably rambled tonight so sorry for that. Its just been one of those days. Will speak tomorrow unless I am... well you know where.
Wednesday, 21 September 2011
Tummy has been a bit up and down today but better than the day before. I am going to have my flu jab tomorrow as Oxford said that I should have it before my op. Like a true bloke I phoned up and asked for the next appointment and they gave me the 1st oct. I didn't think anything of it. In comes my wife who says why did I accept the date so late you should be a priority. She phones the surgery and bang I have an appointment tomorrow. How does she do it? I would have sat on my arse and done nothing but yet again she sorted it. Women eh!!
It actually feels like I have been on the list for ages when its only been a few days. I can't imagine what its like when you are on the list for years. Still I could get a call tonight who knows. Its a bit bizarre as there are times in the day when I kind of forget why I am at home then there are other times when I desperately want to get to hospital quickly.
Right now as I write my blog my wife is trying very hard to keep her cool whilst she goes over homework with my daughter. 2 strops, 3 shouting matches, 1 tantrum and a sulk later my daughter does actually end up listening. Why is it so hard? At the moment I don't have the patience and would just shout so I steer clear but its a real challenge at times.
Right its time to play table tennis against my son on the wii so I had better go. He tells me he has never played it yet I have seen him practising for days. Bet I thrash him not!!!
Will keep you updated as always, only 3 hours till the morphine, can't wait.
Tuesday, 20 September 2011
As the day went on things got a little better. There was the odd hiccup when a dash to the loo was needed but by the afternoon I was ok. Now it's the evening I am getting tired but we have Great British Bake Off and The Body Farm to watch before my night time meds. And best not forget to record Holby City/ I am going to have loads of programmes to watch when I am recovering.
So will it be tonight? Who knows. All I know is that as each day goes by it increases the chances of being called which in turn gets exciting and extremely scary.
When you are home for this length of time its inevitable that so many things cross your mind. Aside from my health, my big concern is getting back to work quickly enough to support the family yet I know that its going to be difficult to get going for a number of months. I think that anyone in my position would think the same but having not worked for a few months and got many months of recovery it is to be honest something that stresses me quite a bit. The reality is that I can't do anything about it although there will be some interim things that I can do such as give bar mitzvah lessons or write speeches.
If I am going to go down a different path when I am fit then I need to ensure that any studying or research is done while I am at home so when health allows I can hit the ground running. As I have said before I do have an idea of what I would like to do its now a question of seeing if I can make a business of it and how quickly that can be done. I guess that you have to believe in yourself and then hope that others will also believe in me. All the studies show that when you are in your forties that is the optimum time to earn the most money for your family. I hope that it will be the same for me - just got a small thing called a transplant to get through first.
Its funny how your life ends up being so very different to what you had expected or planned. growing up with Crohns I had always been used to having the odd hiccup and after 20 different surgeries I knew that I would spend a fair amount of time in hospital. But transplant - well that was never on the agenda and as the days roll on it actually becomes more and more daunting. So many times in the day I say to myself maybe I don't need it or maybe I could cope without it. I know that is not realistic but too much time to think is a bad thing.
Anyhow I had better go, they have nearly finished baking the cheese cakes so I need to see who is eliminated. As always will keep you posted on any over night calls.
Monday, 19 September 2011
We have spoken to the school who have been great and they have promised that we can speak to the kids whenever we need too. They will also keep an eye on them in classes which is great. It just leaves what to do if the call comes in the middle of the night. Again everyone has their own opinion but we have decided to do whatever the kids feel they will want. If they want someone here when they wake up then we will organise it, after all we have been inundated with incredibly kind offers of help on this front. However if they want to sort themselves out and go off to school then we feel that they are old enough to make that decision. It's so tough to know what is right and what is wrong. The truth is that none of us have gone through this and you can't possibly know what to do unless you are in the middle of it and even then you don't know if you are making the right decisions.
Health wise each day raises more and more challenges we are trying so hard not to let it consume our every second but its incredibly hard not to think about it. Its the fear of the unknown and the fear of what it will be like when we come out the other side. Oh I know that I am rambling but its therapeutic talking to you like this. The only one who doesn't answer back is the dog but I suspect that even he knows that something is up.
We try very hard not talk to about transplant this and transplant that during the day. Unfortunately for my wife I am around 24/7 which is probably driving her crazy but hopefully it won't be for long. I try and wash up, tidy up, iron anything to keep busy and I think that she would rather that I got out of her way so it all gets a bit fractious at times.
Anyhow I have a recording of Holby City to watch tonight before a bath and bed. Of course I will keep you posted tomorrow on the next installment.
Bye for now
Sunday, 18 September 2011
After that it was off to collect my eldest and then help him set up his 3 legged sponsored walk that he had organised. Thankfully the weather held firm and the rain just about stayed away. He did brilliantly. He got sponsorship for everything and also had some great raffle prizes. So far he has raised over £700 which is absolutely incredible.
Finally it was off to my sister in law for a farewell tea for my nephew who starts uni next week. He really is a lovely boy and I am certain that one day he will excel in everything his chooses to do. My kids adore him and I am sure he will have an incredible time. What I can't believe is that in 3 years it will be the turn of my eldest. How old does that make me feel.
So all of that takes me right up to now where I am slumped in the chair knackered. I prefer to try and keep going otherwise I would just spend the days in bed. I am much happier helping round the house as at least I feel that I am making a contribution otherwise you have that feeling of uselessness. At the same time I am trying to work out what I want to do with my life once I started recovering. I have got a pretty good idea it's just a question of working things through and making sure that I can make some money, after all that's what makes the world go round!! I know that I owe it to everyone to have a successful future so lets get over the op and then I can focus a bit more. Right now it's the surgery that consumes my mind pretty much 24/7.
So tomorrow is the start of a new week and I don't know why I have a feeling that this could be the week. So I will keep you posted as to what is going on in the meantime its time for bath and and then Spooks - what a great show you should watch it if you can BBC1.
Saturday, 17 September 2011
The kids seem so resilient but in reality they are only kids and it must be so hard for them particularly at night time. In future I am going to have to remember to give them an extra kiss and an extra big hug just in case that its the last hug for a few weeks.
Not only did we discuss night time but they also have to cope with perhaps being called out of lessons as school. We have alerted the school as to what is going on and the idea is that if we are called whilst they are at school, the kids would all be called in to a room together and told what is going on and they will hopefully have the chance of speaking to us so that we can reassure them.
For me its this kind of stuff that we don't really talk about but has huge impact on their lives that is so difficult to explain. They are really incredible kids and they seem to cope so well but there must be so much going through their minds. Thankfully Oxford have also give us a contact number that the kids can have in case they want to speak to someone and its also a hot line to the transplant coordinator so that they can get updates on my without waiting for mum to call them.
Today has really been a family day, time for us all to be together, to shout, to argue but above all to be together. We are going to have precious few of these times for the next few months and it makes me realise how much I am going to miss. We are so lucky to have such fantastic kids.
Having talked about the kids I am not forgetting the impact on my wife. How will she cope? There has to be so much going through her mind right now and sometimes we talk it all through and sometimes we just don't want to chat about it. I guess its just that we don't know and this fear of the unknown is effecting us all in so many different ways.
Anyhow enough of the tough times, at the time of writing QPR are winning 2-0. It doesn't mean that it will end like that but at least it brings a smile to the face.
Fingers crossed that the weather holds for tomorrow. Its my son's 3 legged charity walk tomorrow and he has put in so much work to make it a success. I hope that those who have promised to come do turn up and that those who are thinking about coming take that plunge and turn up. Come on and help him make the event a spectacular event.
That's all for now
Friday, 16 September 2011
Think I'll stay inside its easier.
Healthwise as I said I'm ok at the moment no great dramas today. Of course I will keep you posted later.
Thursday, 15 September 2011
I am getting very fed up with my feed. I've really had enough carrying this ruck sack around and I cant wait to get rid of it all. Only problem is that they have already warned me that I may need to continue for a little while - can't win can you!
Well this is the first day gone and no call. It all seemed a bit odd today almost as if we weren't really ready. I'd like to get through the weekend if possible but who knows its all out of my hands now.
Will catch up with you tomorrow.
Night night xx
Had to go up to UCH today to collect some meds that my GP won't prescribe any more. Hopefully this is the last trip that I will have to make as I have a month's supply. Rest of the day has been fairly quiet and now its off to collect the kids from drama rehearsal. Thursday evenings are always very busy with piano lessons, gym and drama. Gosh what a life the kids lead.
That is about it for now will probably come back and chat a bit more later but for now.........
Oh by the way do you like the new style of my blog. My wife expertly designed my blog and I think it looks pretty cool - what do you think?
Wednesday, 14 September 2011
We had a good chat at dinner with the kids and of course they expressed how worried they are and it all got a bit much for our youngest. You spend all your life wanting to protect your kids but on this occasion its the fear of the unknown. For me one of the only ways that I can rationalise this is with the thoughts that if this is happening to me then it won't happen to my wife and kids. I know that this is a bit of topsy turvy thinking but it keeps me going. If I can protect them then I don't mind going through this.
Will update you tomorrow as to how I am feeling once on the list and if you can spread this blog out there to any who want to read that would be fab.
Tuesday, 13 September 2011
Gradually my health is getting a little worse but then you have heard that constantly from me. At the moment though I have an extra problem with my venting peg in my stomach. Not only does it get blocked fairly regularly but now it is bleeding a little. I think that if I wasn't due to go in to hospital soon then I would get it seen to but its now really a question of hanging in there until d day.
Obviously I can't get d-day out of my mind and I think its really the fear of the unknown. Still I am sure it will all work out. In the meantime things seem to be going wrong in the home just at the wrong time. First we had damp in our dinning room and have had to sort that out and no doubt put in an insurance claim to redecorate the dining room. That was followed quickly by the washing machine breaking down and eventually being condemned and again insurance had to be contacted. Finally the electrics keep blowing and we are not sure why so the electrician is coming tomorrow. We think that we have isolated the plug sockets causing the problem so lets see tomorrow. I am not sure that we can cope with much more going wrong. I know how fed up my wife is feeling right now and these are just more body blows. Although they say things come in threes so hopefully we have had our lot and that really will be it.
So its a new day tomorrow and things have to go right, for every one's sake.
Right its time to watch telly before bed. Tomorrow is going to be a better day.
Monday, 12 September 2011
At least QPR are on telly tonight so hopefully it will be worth watching and we get our first home win.
Am seeing a few family members over the next couple of days. I think that they worry that as soon as Thursday comes I will be in hospital immediately so they have to get a visit in now. Actually it is highly likely that I may have to wait a week or two so saying the last goodbyes is a little odd.
We have sorted out how we are going to do things kids wise once I get the call but who knows whether all the best laid plans will go out the window when the call finally does come through.
Doc Martin is back on tonight so will flick over whilst watching footie then its bath and bed. I wonder how long it will be until I can have a bath again. In hospital its showers but I do love a soak. You see its stupid things like a bath that worry that tiny little brain of mine.
Please stay in touch and I will be back in touch soon.
Sunday, 11 September 2011
Talking of positive things a great friend of mine has put my name forward to be an Olympic torch carrier. The idea is that if I am successful then I will do my bit of the relay at the end of next year's charity bike ride and hopefully it will help us raise some more money. The only way I can get chosen is if loads of people tick the box that they "like me".
The Short link to the page is http://tiny.cc/wrokhI would like to ask everyone to click on the “Facebook like” button and to distribute this link to all your friends with the same message as to what to do. Thanks so much for your help it would be absolutely amazing if I could get picked. The deadline is Sept 25th so we do not have that long.
Although my head is filled with everything to do with the surgery I inevitably have to think about what I will do work wise once I have recovered. My mind is pretty set that I will probably have to look outside my licensing field as that sector continues to be hit very hard with the big boys getting bigger and squeezing out the middle men. I have a pretty good idea of what I would love to do the question is whether it is practical and can generate the income we need as a family. It's all food for thought and as you can imagine so many things go swirling round in this tiny head of mine. I guess things will work out but also it would be good to make use of the time whilst I am recovering to maybe study something that can be of use in the future. The sports therapy had to come to a halt due to my ill health so I know that I need to be sensible about things. It would be fab though if I could do something that I am going to love but that also generates good money. It's all food for thought.
Anyway its soon time to put on my feed so I had better go.
Saturday, 10 September 2011
Fairly quite start to the day today. Have to take our dog waffle to the vet as he is not feeling well. he is such a scardy cat that it will take a lot of persuasion to get him there.
Out for tea and then a drink with friends so should be a good day.
will be back soon
Friday, 9 September 2011
Last night wasn't the easiest night sleep I have had, i just think that I had too much on my mind. My main concern is how my wife will be when I am in theatre. We are expecting the operation to take about 10 hours but they have warned us that it is possible that it could go on for 24hrs. That doesnt mean that there are any problems it is just more complicated than they hoped. For all that time she will be alone. Don't get me wrong she wants to be alone, I think that it will be much easier for her to be on her own rather than worry about someone else with her and certainly she is keen to keep her own company. She can walk, sleep, read or do what she wants. For me I just hope that she will be ok and there is nothing I can do about it. They have guaranteed her the use of the transplant flat so at least she will have a base.
Then I am thinking about what it will be like to have a bag. Its been talked about in a rather blaze fashion but I wonder what it is actually going to be like waking up having that attached to me. I guess that I will get used to it, I seem to manage to get used to most things.
Anyhow this weekend is a busy one which is great. Out tonight and then for a late tea tomorrow so I will keep myself busy. The kids seem so resilient. I am not entirely sure what is going through their mind. Thankfully I think that school occupies a lot of their thoughts which is great.
We are also out for supper tonight. so I will keep you updated at some stage over the weekend.
Thursday, 8 September 2011
I am therefore going to apologise in advance if there are certain things that I don't go too. I may try and avoid crowds and I will ask that if we have any plans to get together and anyone is struggling a little with something then please let me know in advance.
I think that is finally it about today but my brain goes to mush regularly so I could be back on line soon.
So from next Thursday the phone has to be on 24hrs a day and we have to have bags packed ready to go. She anticipates that it could be quite quick even saying that she is at a conference next Thursday/Friday and we should be ready in case we are called by another coordinator whilst she is away.
We were then taken back to the ward and I asked to see Intensive Care. Whilst in there I realised that we had seen it before but I couldn't remember and I wanted to see the tubes that would be hooked up to me and where I was likely to be. I think that one of my biggest fears is the tube that they put down your throat, they said that it would come out once I am awake but for some reason it worried me. Anyhow they said that I am likely to be in there at least a couple of days although it could be longer depending on how I react and we shouldn't worry if I am there for a longer period.
They told us that we should also be prepared for a long wait once we get called in. It will be three or four hours and you apparently only get the final go ahead once you are in the anesthetists room when they phone through and say go. Hopefully it won't happen but they did warn me that there could be a false alarm and that I could end up driving home again. I hope not I think that would be very hard to take.
We were also told that the op will be very long. On average its about 10 hours but we were told that it could take longer and not to worry if that is the case. The surgeons have been known to take 24hrs if needs be and that this is not a sign of anything going wrong just that this is a very very complex surgery.
So I guess that it really is happening and its time to get ready. Next week whilst the kids are at school I will buy a few essentials and then make sure the phones are fully charged.
So that was about it for today's meeting. I did ask what sort of person is likely to be my donor and they said that the only stipulation is that they weigh no more than 80kilos. Apparently if they are heavier than that the bowel will be too big for me. However aside from that it can come from a man, woman or even child. Now that it a bit spooky. I am not sure how I am going to feel with someone else's organ inside my body.
Will update you more later.
PS if you ever have any questions then feel free to post a comment I am happy to answer if I can.
Wednesday, 7 September 2011
Will let you know how it goes tomorrow. I am not expecting much other than blood tests and a serious chat with the transplant coordinator about exactly what is going to happen.
So now I am getting very nervous it feels very real and surgery is only round the corner. Thanks all of you for the kind wishes of support. I am sorry for sending mass emails or texts out but it was the quickest way to let you all know what is happening. Of course when I get back from Oxford tomorrow I will keep you posted.
Right, I am now off to see if I can upload a video to this blog. Will probably muck it up but at least I tried.
Tuesday, 6 September 2011
I now know that I will not be on the list for up to two more weeks. However I am having the final blood tests this week in Oxford and I have been told that once I am on the list I am unlikely to wait a month and it could simply be a matter of days. Scary eh!!
So for now we soldier on and see what happens over the coming days and of course I will keep you posted.
I promise to post news as soon as I have it sorry its taken so long and so many broken deadlines I promise it wasnt down to me.
Speak later - I hope!!!!
Monday, 5 September 2011
I feel for the team at Oxford, they are trying hard to help me but its pain staking!!!
Will update tomorrow when I hear something. When you have an illness that reacts badly to stress I have never been through a more stressful experience than simply getting a fax sent that was supposed to have been done two months ago. Flipping heck!
Sunday, 4 September 2011
Feel totally knackered and crap but hopefully this will be the week when things take a giant step forward. Obviously I will keep you posted. Also I have just found out about this government petition to make prescriptions free for crohns sufferers. At the moment we have to pay and by a quirk of fate the fact that I also have epilepsy means that I do get my drugs free but that will not last for ever. Please please sign up and forward the link to as many as you can.
FOR CROHNS SUFFERS SIGN IT FOR FREE MEDS https://submissions.epetitions.direct.gov.uk/petitions/15157
Friday, 2 September 2011
Maybe Monday will be d-day, I am keeping everything crossed and ask you to do the same for me.
Have a lovely weekend.
So all in all I won't hear anything now until Monday and if at all possible I intend to get an answer then. I don't think that I can go on much further anyhow as life is getting harder and harder. I will hang in there over the weekend and hope to give you more info on Monday.
Have a good weekend.
Thursday, 1 September 2011
Aside from that I haven't really done much today. A bit of running around this morning and a visit to my Grandma which was great and now I am sitting by the phone. I promise to let you know as soon as I do.
Sorry not to report anything further.