I have had a meeting with Professor Marks, the 100 day milestone is the 28th June. The closer this date gets the more I think that it will be a false dawn as my drugs have not been reduced and the has not been much change over the last month. However I could not be proved more wrong. On the 21st May my restrictions on diet and where I could go were lifted. This means I can have steak and a beer!!! This was totally unexpected and welcome surprise. While I still need to be careful about what I eat it will be good not to be reliant on frozen food.
You won't be surprised that I was out for a beer the very next day. I had the watchful eye of my Dad making sure I did not consume to much. This was also followed by a nice bit of Steak. While this initially was going to be a quiet occasion I could not help mention it to several people. Before I knew it around 15 people were turning up to have a drink with me. It might be that I know a lot of alcoholics looking for any excuse for a drink. The drinks went down very easily but I did not go overboard and the was no hangover the morning after. Which was lucky as I had a meeting with the othopedic consultant.
I've been waiting for something to be done about my leg since January\February. It has been a long running saga and finally the doctors agree with me. It was what I was expecting around a month ago... I'm finally booked in to have an operation on my leg to remove the remainder of the scar tissue and seal up the hole in my leg. Having the operation does present me with some further risks... but so does leaving a open hole in my leg. I don't dread the operation but I am really not looking forward to the enforced stay in hospital. You would have thought I would be used to it, but last time I went in I did not emerge again for a few months. Hopefully this will be a short stay this time.
Other progress is that I can start work from home. This is fantastic news. While working from home is very strange and the are plenty of distractions it is good to start to get back involved. I've even started looking for a car for when I return to work properly.
The dodgeball tournament is also progressing nicely. We have held a trial game to figure out some of the rules. The Evening post turned up to take photos of us in fancy dress. The game was quicker than we anticipated, every one's competitive streak soon came out and dodgeballs were soon filling the air. One of the Salmon Dodgers got a nasty blow to the balls which floored him. It left everyone else in tears laughing... not very sympathetic but it was very funny. The were 2 articles published in the Western Daily Mail and in the Evening Post. Hopefully we will get a few more entries and donations as a result of this.
Lastly I have had my bone marrow sample taken now. While the process is quite painful it was over quickly and I await the results to give an initial all clear. Professor Marks has said he would be very surprised if anything was found. The test will look for leukaemia cells and test down to the millionth cell. Hopefully not finding any.
Wedding season is about to start, it seems I have timed my recovery very well. I have found myself with very few weekends free up until September. I will have to postpone any celebration party until October.. It may done to celebrate my return to the rugby pitch.
Cheers
Robbie
Thursday 29 May 2008
Thursday 15 May 2008
Summer continues as does my wait for any progress. At least been off work has its benefits when the sun is out.
I think I overdid it on the exercise last week. My red blood cell counts were low. I did think I was producing red blood cells but obviously not enough to cope with my exercise routines. I feel hungover on Friday and have little energy. The low blood count combined with the cyclosporen drug and steroids makes me feel worse on Saturday and Sunday.
However this is not enough to stop me enjoying myself. I spend Saturday round a friends sitting in a hammock and Sunday on the downs. What better way to spend a weekend. Although I was very tempted by the BBQ's which were going on. I managed to resist and stick to my microwave meals.
Sunday night I develop a pain around my line (a implant in my chest to make injections easier) this is worrying as it signals that the is a infection. My CRP count has risen slightly confirming this. As a result after seeing the doctors on Monday the decision is taken to remove the line. Hopefully the infection has been caught before it spreads and causes further trouble. When I go in on Thursday it looks like I've got away with it, CRP count is back below 10 and the is no tenderness around the implant area. This shows that my immune system is working as well. Having no line will mean that I have more injections but I'm glad to be rid of it, fingers crossed I won't need another one.
Mondays results also show that my Red Blood cells had gone up. This again is repeated on Thursday. I was worried that something may have gone wrong with the transplant but this confirms all is OK and I was probably overdoing it with exercise.
In my wondering round the hospital I have bumped into two familiar faces. First of all I bumped into Uri. He had his transplant before me and was coming out of isolation as I was going in. In all honesty he looked like sh!t. He has graft vs host in his lungs. I almost feel guilty about seeing him when I am doing so well. My worse nightmare would be to get graft vs host in the lungs as it almost always leaves long term damage. Its also a reality check that problems can still occur. The second person was Merve. Merve had been through some tough times but his transplant seemed to have gone very well. He has not even lost his hair and has twice as much colour as when I last saw him.
Thanks to those who have popped in to keep me company this week, always welcome and appreciated. Don't forget to enter your team into the dodgeball competition (www.dodgeballbristol.co.uk), or if you can't take part feel free to make a donation to the just giving site (link to right of page).
Cheers
Robbie
I think I overdid it on the exercise last week. My red blood cell counts were low. I did think I was producing red blood cells but obviously not enough to cope with my exercise routines. I feel hungover on Friday and have little energy. The low blood count combined with the cyclosporen drug and steroids makes me feel worse on Saturday and Sunday.
However this is not enough to stop me enjoying myself. I spend Saturday round a friends sitting in a hammock and Sunday on the downs. What better way to spend a weekend. Although I was very tempted by the BBQ's which were going on. I managed to resist and stick to my microwave meals.
Sunday night I develop a pain around my line (a implant in my chest to make injections easier) this is worrying as it signals that the is a infection. My CRP count has risen slightly confirming this. As a result after seeing the doctors on Monday the decision is taken to remove the line. Hopefully the infection has been caught before it spreads and causes further trouble. When I go in on Thursday it looks like I've got away with it, CRP count is back below 10 and the is no tenderness around the implant area. This shows that my immune system is working as well. Having no line will mean that I have more injections but I'm glad to be rid of it, fingers crossed I won't need another one.
Mondays results also show that my Red Blood cells had gone up. This again is repeated on Thursday. I was worried that something may have gone wrong with the transplant but this confirms all is OK and I was probably overdoing it with exercise.
In my wondering round the hospital I have bumped into two familiar faces. First of all I bumped into Uri. He had his transplant before me and was coming out of isolation as I was going in. In all honesty he looked like sh!t. He has graft vs host in his lungs. I almost feel guilty about seeing him when I am doing so well. My worse nightmare would be to get graft vs host in the lungs as it almost always leaves long term damage. Its also a reality check that problems can still occur. The second person was Merve. Merve had been through some tough times but his transplant seemed to have gone very well. He has not even lost his hair and has twice as much colour as when I last saw him.
Thanks to those who have popped in to keep me company this week, always welcome and appreciated. Don't forget to enter your team into the dodgeball competition (www.dodgeballbristol.co.uk), or if you can't take part feel free to make a donation to the just giving site (link to right of page).
Cheers
Robbie
Thursday 8 May 2008
Summers Here!
While this week the has been little\no progress medically. Its been a routine week with drugs been adjusted slightly but no new news on how the bone marrow graft is doing.
The is a mythical 100 day mark is nearing (20 days now). This signals the end of the bone marrow isolation\period. The significance of this is that at the end of the 100 days the restrictions on me may be reduced. I might be able to eat properly instead of frozen foods, maybe be able to go out for a social drink. However this will be dependant on what drugs I am on at the time. Hence its a mythical 100 days and I will have to see what happens. That does not mean I'm not counting the days.
I have had some benefits of been off work this week and that is the chance to enjoy the sunshine. When out of hospital I have spent most of this week sitting on the downs enjoying watching the world go by. If only I could run and I'd be joining in the touch rugby. My physical rehabilitation is going well with strength slowly returning but my leg is still holding up progress.
Hope all well with everyone, and don't forget to get your dodgeball entries in. www.dodgeballbristol.co.uk
Robbie
The is a mythical 100 day mark is nearing (20 days now). This signals the end of the bone marrow isolation\period. The significance of this is that at the end of the 100 days the restrictions on me may be reduced. I might be able to eat properly instead of frozen foods, maybe be able to go out for a social drink. However this will be dependant on what drugs I am on at the time. Hence its a mythical 100 days and I will have to see what happens. That does not mean I'm not counting the days.
I have had some benefits of been off work this week and that is the chance to enjoy the sunshine. When out of hospital I have spent most of this week sitting on the downs enjoying watching the world go by. If only I could run and I'd be joining in the touch rugby. My physical rehabilitation is going well with strength slowly returning but my leg is still holding up progress.
Hope all well with everyone, and don't forget to get your dodgeball entries in. www.dodgeballbristol.co.uk
Robbie
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