Since the last update I have been waiting for some good news. The experimental drug should have taken effect. Hopefully the TTP will have been defeated and I can move on the the top up transplant and a recovery of blood counts. I am really hopeful that this will be the case. But am also aware from experience anything can happen.
I am now seeing the doctors on a more regular basis after complaining, but they only know enough to deal with my minor niggles. To their credit they are trying to move forward some of the niggles that I am having.
First of all I have a problem with a large ulcer on my tongue. This has been caused by my mouth swelling\face swelling up because of the steroids I am on. I am biting my tongue.. I have been referred to the dental hospital who have sanded down a sharp tooth and given me a gum shield to wear at night. At present this has not done any good but with any luck will sort it out over the next week.
The second problem is my leg. It is still causing me problems.. but the doctors have now arranged some physio. Slightly more worrying is the potential cause of the problem. Once again the intensive treatment of drugs and radiotherapy may have caused some permanent damage to my hip (the strength of the bone). Worse case scenario would be a hip transplant!!! I personally think this is quite unlikely and the issues I am having are partly due to the drugs and water retention caused by the steroids and then due to muscle deterioration.
I see a few other doctors but for the big picture I need to see Prof Marks. He proves very illusive but eventually I get to see him. He confirms that the experimental drug so far has not done anything but explains that it may have a delayed reaction. Its been a over a week since my last dose so I would expect to see something happen fairly soon. In terms of the transplant it will take around 2 weeks to see if it has grafted. Back to the waiting game. The transplant itself when it finally happens is fairly straight forward. I do not suffer any immediate side effects but am left drained and fall asleep shortly after getting home. This lasts until Saturday morning.. I have a pounding headache and little energy but seem to start to recover in the afternoon.
This week has been a long week. I have been in hospital everyday apart from Tuesday. Each day I've been in from 8 until at least 5. Most of this time is waiting around. I have a set routine. Which I have decided that I need to change as I've started climbing the walls again. Its getting very frustrating.
Anyway the are some better things to talk about than hospital treatments. On the weekend Emma, Julie and Widget put on another fantastic party. The theme was Noahs ark. While I am still not drinking it was great fun. I went as a Lion but was out done by Oly Ladbrooks lobster and James B's homemade crocodile. The girls made a fantastic effort with homemade peacocks (I am not even going to ask where they got the feathers. I hope they did not go chasing them round some country estate but I would not put it passed them). The party went on until late in the night with the neighbours pulling the fuses in a attempt to finish the party. Cheers to the girls for a good night out.
On my day off (Tuesday) I went to see Alex, Amy & Alonzo. I could not get used to seeing Alex & Amy as parents. They have settled into it remarkably quickly, although I'm sure it may not seem that way to them. Baby Alonso seems so small and fragile, although the midwife says he has big hands.. they seem tiny to me. Alonzo has a fantastic smile and loves sucking on Alex's finger. He does not half fidget when he wants attention, building up muscles for his future rugby career. He does squats and press ups on Alex's chest. Don't think he is quite ready for a rugby ball yet, but I'm sure Alex will introduce it as soon as possible. Amy has started recovering very quickly. You would not guess she had just had a baby.
This weekend I am keeping it quite. My immune system has not just collapsed but completely disappeared so I'm been a bit of a bubble boy keeping myself away from people. I am feeling fairly run down but hoping we will get some positive news over the next 2 weeks and Decembers celebrations will be even more fun and meaningful.
Long term I have the Lions tour to look forward to. Also I have decided that I'm going to take up canoeing \ kayaking. The is also a charity cycle ride in Napal I would like to do. Before I can do any of this I need to get my body in shape.
Well done to Gav Hooper who completed cycling the Great Wall of China last week. I'm glad to hear some quotes from my blog inspired a few people on. The pictures look fantastic. If anyone wants to make a donation the is a link on the right hand side of the blog.
Also thanks to my Dad who was visiting this week and all those who sent messages of support for the transplant. It has not been an easy week and having the support their does make a huge difference to me.
Cheers
Robbie
Saturday, 25 October 2008
Tuesday, 14 October 2008
Baby Boom
This morning at 5:31 baby Alonzo Christopher Ellis Millard was born. This was followed at 9:40 by baby Douglas Higgs at 9:40. Congratulations to both the Millard family and Higgs. Both families are doing well and are taking well deserved rests. Does make you wonder what was happening 9 months ago??
I'm sure Alex & Amy and Wibbles and Emma will make fantastic parents. I could not be happier for both of them. I'm looking forward to meeting both Alonzo and Douglas. Although I don't want to be trusted in holding the babies yet. I'll just help out in wetting the babies head.
This news eclipses anything else that is going on, but I suppose I better give an update on how everything else is going. I still do not know if the new drug is having an effect. I have had some trouble getting doctors who know what they are talking about. They seem to have switched around who is meant to be looking after me on a day to day basis. This has caused confusion and I don't think they know who is doing what. When I do see one of these doctors they are unfamiliar with my specific problem (TTP is extremely rare so they need to be very familiar with my notes). What is happening at the moment is the nurses give me my test results and we have a chat and tell the doctor what "top ups" I require. These are then signed off by the doctor without him even seeing me! I have made a complaint to sort this out, now is not the time to put up with doctors neglecting their duties. At the end of the day the only person who I think understands what is going on is Prof Marks. Unfortunately I won't be seeing him until Friday.
I am still having issues with my joints. This is getting very frustrating as I really want to get on with rehabilitation but am having to take painkillers to just get around. I believe this is due to some of the drugs I am on, so hopefully in the next week or so they will be dropped after my top up transplant. However apart from that I've been feeling quite well. I am still hoping to be back at work soon, although from past experience I am not going to get my hopes up to much yet.. the is a lot that can happen still.
I have still been keeping busy outside of hospital. I seem to have taken on the role of barkeep at the rugby club. As well as doing this I managed to get out in the sun to watch the 2's and 3's play on the weekend. My immune system has not been behaving itself recently so I've had to be a little careful.
Date for your diary's: 31st January 09. A celebration of a year since my original transplant and my birthday. Details to be confirmed.
Hope all is well with everyone.
Robbie
I'm sure Alex & Amy and Wibbles and Emma will make fantastic parents. I could not be happier for both of them. I'm looking forward to meeting both Alonzo and Douglas. Although I don't want to be trusted in holding the babies yet. I'll just help out in wetting the babies head.
This news eclipses anything else that is going on, but I suppose I better give an update on how everything else is going. I still do not know if the new drug is having an effect. I have had some trouble getting doctors who know what they are talking about. They seem to have switched around who is meant to be looking after me on a day to day basis. This has caused confusion and I don't think they know who is doing what. When I do see one of these doctors they are unfamiliar with my specific problem (TTP is extremely rare so they need to be very familiar with my notes). What is happening at the moment is the nurses give me my test results and we have a chat and tell the doctor what "top ups" I require. These are then signed off by the doctor without him even seeing me! I have made a complaint to sort this out, now is not the time to put up with doctors neglecting their duties. At the end of the day the only person who I think understands what is going on is Prof Marks. Unfortunately I won't be seeing him until Friday.
I am still having issues with my joints. This is getting very frustrating as I really want to get on with rehabilitation but am having to take painkillers to just get around. I believe this is due to some of the drugs I am on, so hopefully in the next week or so they will be dropped after my top up transplant. However apart from that I've been feeling quite well. I am still hoping to be back at work soon, although from past experience I am not going to get my hopes up to much yet.. the is a lot that can happen still.
I have still been keeping busy outside of hospital. I seem to have taken on the role of barkeep at the rugby club. As well as doing this I managed to get out in the sun to watch the 2's and 3's play on the weekend. My immune system has not been behaving itself recently so I've had to be a little careful.
Date for your diary's: 31st January 09. A celebration of a year since my original transplant and my birthday. Details to be confirmed.
Hope all is well with everyone.
Robbie
Sunday, 5 October 2008
Anniversary
It was the 6th October 07 that I was diagnosed. How time flys by. How things have changed. Initially I was told it would take about a year for me to get back to work, I was confident that it would not take that long and even thought I might be able to be back playing rugby in November and go touring to Dubai. While I always knew it would be tough and a long haul I still underestimated the effects it would have. I have been given the ok to start exercising again, I have no strength, cardio\circulation is poor and my body seems to take ages to recover. Reluctantly I accept I won't be playing rugby this season, but however with the top up of stem cells on the 24th hopefully I'll be back in work in November. While I am frustrated my life is not back on track I have to remind myself a year ago I was told I had a 50/50 chance.
In terms of treatment it is to early to say what the new drug is doing. I have been up and down all week. I am having some serious issues with my joints. While I tend to try and avoid painkillers I have had to start taking them to get around and sleep. Its not clear what causes this it is annoying as it is slowing my progress in getting exercising.
I am still in hospital nearly everyday. But this week I manage to get Tuesday of. Amy pops round after lunch (she is also of work on maternity leave). Its good to have company on my day of and we head to the cinema for the afternoon. After Alex (Amy's other half) arrives and we head for a curry.. I think the waiters get a little scared when they see the size of Amy's bumb. I'm sure the curry probably should have been hotter but they did not want to risk setting Amy off. Meanwhile we are still awaiting news of Wibbles and Emma's baby.
Wednesday I get some more good news. I have a provisional transplant date of the 24th October. Once I get this "top up" of stem cells hopefully my body will start producing enough blood to support itself. I would anticipate if the are no further complications I could get back to work 2/3 weeks after this. While I am still on to many drugs to drive I intend to start looking for a car again this month. I hope I'm not getting ahead of myself again. While I do not know if the new drug is doing its job yet I feel the treatment is progressing and apart from my joint problems I am feeling pretty good.
To celebrate (I think) I went to watch Bristol vs Saracens on Wednesday night. Bristol slipped to their 5th straight defeat. Whats worse for the 2nd game in a row they could have won it. A typical example of a team without confidence. Brizzley Bear got to wonder round with Miss Bristol (In all my 5 years of doing Brizzley they never arranged that for me) and the were cheerleaders who were quite funny. Bristol need to start winning if they are going to avoid relegation this season.
Friday night is Murder Mystery at the Palace (Emily, Julies and Widgets house) its Las Vegas theme and I am assigned Al Shuckup a Elvis impersonater. The girls have put in some serious effort they all look fantastic. The murder mystery is a little confusing. I think everyone gets lost fairly quickly. We have a tasty dinner and carry on with the murder mystery. We have a bit of a mess up, just before the final round where we all make our accusations we play the video expecting another clue... but it reveals who the murderer was. Somehow half the group still make incorrect accusations??
I went to watch OB's on Saturday vs Aretians. My leg seizes up and I have to head inside to sit down. Unfortunately the game turns when I do this and OB's go from leading and then end up losing 22 - 18. I have forgotten my painkillers so have to put up with it. The bar staff have not turned up so I also end up running the bar. In the evening I head to the oak and catch up with the other OB's. Heading home after last orders leaving everyone else to head down to Clifton Triangle.
St Mary's ladies are playing on Saturday. Emily, Julie and Widget have been supporting OB's each weekend and helping cook food and run the bar. The least we could do is go and support them. After a good start St Marys take a lead with forward dominated play, however Worcester come back with some quick backs taking advantage of a disorganised defence for Worcester to win confortably in the end. Widget breaks her ankle!! I think it is just chipped but get well soon.
Hopefully I'll find out how the new treatment is going this week. It may be that I need to restart the super cyro drug again. This would mean I have to be in everyday including the weekends again. Will have to wait and see again. If this works and the top up transplant is successful I entre the next stage of recovery. While this may involve less blood counts and fewer visits to hospital it is actually more of a mental challenge. You get no say in getting Leukaemia and how it effects you. You have to accept it and deal with each challenge as they come along. The next stage of recovery is different. It would be easy to sit back and think that is it. But its not at all.. You have to accept that Leukaemia has changed your life for ever.. you can't expect to step back into your old life. It will take me another year to get to a reasonable level of fitness and probably a little longer to get back to how fit I would want to be. The same applies to getting back to work. I cannot rush these things but I am looking forward to making progress. The past year has gone so quickly, so before you know it I will be back!!
Still good luck to Wibbles & Emma, Alex & Amy who are expecting very shortly.
In terms of treatment it is to early to say what the new drug is doing. I have been up and down all week. I am having some serious issues with my joints. While I tend to try and avoid painkillers I have had to start taking them to get around and sleep. Its not clear what causes this it is annoying as it is slowing my progress in getting exercising.
I am still in hospital nearly everyday. But this week I manage to get Tuesday of. Amy pops round after lunch (she is also of work on maternity leave). Its good to have company on my day of and we head to the cinema for the afternoon. After Alex (Amy's other half) arrives and we head for a curry.. I think the waiters get a little scared when they see the size of Amy's bumb. I'm sure the curry probably should have been hotter but they did not want to risk setting Amy off. Meanwhile we are still awaiting news of Wibbles and Emma's baby.
Wednesday I get some more good news. I have a provisional transplant date of the 24th October. Once I get this "top up" of stem cells hopefully my body will start producing enough blood to support itself. I would anticipate if the are no further complications I could get back to work 2/3 weeks after this. While I am still on to many drugs to drive I intend to start looking for a car again this month. I hope I'm not getting ahead of myself again. While I do not know if the new drug is doing its job yet I feel the treatment is progressing and apart from my joint problems I am feeling pretty good.
To celebrate (I think) I went to watch Bristol vs Saracens on Wednesday night. Bristol slipped to their 5th straight defeat. Whats worse for the 2nd game in a row they could have won it. A typical example of a team without confidence. Brizzley Bear got to wonder round with Miss Bristol (In all my 5 years of doing Brizzley they never arranged that for me) and the were cheerleaders who were quite funny. Bristol need to start winning if they are going to avoid relegation this season.
Friday night is Murder Mystery at the Palace (Emily, Julies and Widgets house) its Las Vegas theme and I am assigned Al Shuckup a Elvis impersonater. The girls have put in some serious effort they all look fantastic. The murder mystery is a little confusing. I think everyone gets lost fairly quickly. We have a tasty dinner and carry on with the murder mystery. We have a bit of a mess up, just before the final round where we all make our accusations we play the video expecting another clue... but it reveals who the murderer was. Somehow half the group still make incorrect accusations??
I went to watch OB's on Saturday vs Aretians. My leg seizes up and I have to head inside to sit down. Unfortunately the game turns when I do this and OB's go from leading and then end up losing 22 - 18. I have forgotten my painkillers so have to put up with it. The bar staff have not turned up so I also end up running the bar. In the evening I head to the oak and catch up with the other OB's. Heading home after last orders leaving everyone else to head down to Clifton Triangle.
St Mary's ladies are playing on Saturday. Emily, Julie and Widget have been supporting OB's each weekend and helping cook food and run the bar. The least we could do is go and support them. After a good start St Marys take a lead with forward dominated play, however Worcester come back with some quick backs taking advantage of a disorganised defence for Worcester to win confortably in the end. Widget breaks her ankle!! I think it is just chipped but get well soon.
Hopefully I'll find out how the new treatment is going this week. It may be that I need to restart the super cyro drug again. This would mean I have to be in everyday including the weekends again. Will have to wait and see again. If this works and the top up transplant is successful I entre the next stage of recovery. While this may involve less blood counts and fewer visits to hospital it is actually more of a mental challenge. You get no say in getting Leukaemia and how it effects you. You have to accept it and deal with each challenge as they come along. The next stage of recovery is different. It would be easy to sit back and think that is it. But its not at all.. You have to accept that Leukaemia has changed your life for ever.. you can't expect to step back into your old life. It will take me another year to get to a reasonable level of fitness and probably a little longer to get back to how fit I would want to be. The same applies to getting back to work. I cannot rush these things but I am looking forward to making progress. The past year has gone so quickly, so before you know it I will be back!!
Still good luck to Wibbles & Emma, Alex & Amy who are expecting very shortly.
Tuesday, 30 September 2008
Guinea Pig
The new drug is signed off and due to start on Thursday. The side effects are been talked up, but the truth is they have no idea what effect it will have on me. Its only been tried on a handful of people before.. Apart from getting sea sick after taking some anti-sickness tablets I have not had any allergic reactions to any of the other drugs they have given me (fingers crossed this will continue).
Thursday comes quickly and I am in early. They give me various infusions to try limit any reactions I may have to the drug. After the drug is infused I have to wait around for at least 2 hours to see if I react. I have a minor reaction of getting short of breath but nothing serious. As a result I have to stick around a little longer. Now its back again to the waiting game to see if it works? It may take a week or so to see the results.
Thank you for all your messages of support. I received a dozen of them just as I was about to start the new drug. Not only did it make me look incrediably popular in front of the nurses it gave me a very welcome boost.
Iain finally got around to celebrating his 30th birthday in Bristol on Friday night. It got a little messy. The was a good turn out in the Mall and Iain was plied with shots followed by a customary trip to the Corrie Tap for an exhibition cider or 2. We got to Clifton Triangle and Iain was in a little trouble, unfortunately his night ended early and we took him home around 11. Although was not the only person to miss rowing training on Saturday morning.
It got a even more eventful later on that night. Back out in a club called La Rocca we witnessed 2 people get glassed. Normally this club is quite quiet and I have never seen any trouble in there before. One of Iain's mates who was staying at mine had to give a police statement which took a hour or so. We ended up getting a lift home in a Police Van at 5am!
Saturday was also going to be a busy. It was Ollie Boulter's wedding on the Isle Of Wight. That meant the was no lie in for me and it was up early to get there in time. Really should have had an early night on Friday. Timing was perfect... we ran late and were going to miss the ferry, but it was also running late so we got there in time.
The church was fantastic and both Ollie and Cat looked fantastic. The reception was good food, good speechs and some very cheesy music. MC Hammer and Vanilla Ice were played but I still can't do the dancing justice... but I tried. It was a really good day and night. Congratulations to Ollie and Cat & thanks to both their families for the hospitality. Also thanks to Dean & Sarah for getting me there & back.
It was good to have a weekend off hospital, but I have knackered myself out. Joints have seized up again (this is also probably due to an adjustment in my drugs). I am back to some heavy duty painkillers to help me get around. I see the professor on Wednesday to get an update on where things stand and more of the experimental drug on Thursday. But generally blood counts are ok and I am feeling upbeat and postive about how things are going. I am still trying to have a normalish social life outside of hospital. I really want to start been able to do some training.. I have put on a fair bit of weight and am looking a bit chubby, while I need to put on the weight I need to start building up the muscles again. Hopefully I will be able to do this over the next week or so... Otherwise I better cut down on the pies.
Lastly good luck to Wibbles & Emma who are expecting their first child any time now. Looking forward to seeing what you decide to call it (Wibbles: Goliath is unique, but I don't think Emma will let you name your child that).
Cheers
Robbie
Thursday comes quickly and I am in early. They give me various infusions to try limit any reactions I may have to the drug. After the drug is infused I have to wait around for at least 2 hours to see if I react. I have a minor reaction of getting short of breath but nothing serious. As a result I have to stick around a little longer. Now its back again to the waiting game to see if it works? It may take a week or so to see the results.
Thank you for all your messages of support. I received a dozen of them just as I was about to start the new drug. Not only did it make me look incrediably popular in front of the nurses it gave me a very welcome boost.
Iain finally got around to celebrating his 30th birthday in Bristol on Friday night. It got a little messy. The was a good turn out in the Mall and Iain was plied with shots followed by a customary trip to the Corrie Tap for an exhibition cider or 2. We got to Clifton Triangle and Iain was in a little trouble, unfortunately his night ended early and we took him home around 11. Although was not the only person to miss rowing training on Saturday morning.
It got a even more eventful later on that night. Back out in a club called La Rocca we witnessed 2 people get glassed. Normally this club is quite quiet and I have never seen any trouble in there before. One of Iain's mates who was staying at mine had to give a police statement which took a hour or so. We ended up getting a lift home in a Police Van at 5am!
Saturday was also going to be a busy. It was Ollie Boulter's wedding on the Isle Of Wight. That meant the was no lie in for me and it was up early to get there in time. Really should have had an early night on Friday. Timing was perfect... we ran late and were going to miss the ferry, but it was also running late so we got there in time.
The church was fantastic and both Ollie and Cat looked fantastic. The reception was good food, good speechs and some very cheesy music. MC Hammer and Vanilla Ice were played but I still can't do the dancing justice... but I tried. It was a really good day and night. Congratulations to Ollie and Cat & thanks to both their families for the hospitality. Also thanks to Dean & Sarah for getting me there & back.
It was good to have a weekend off hospital, but I have knackered myself out. Joints have seized up again (this is also probably due to an adjustment in my drugs). I am back to some heavy duty painkillers to help me get around. I see the professor on Wednesday to get an update on where things stand and more of the experimental drug on Thursday. But generally blood counts are ok and I am feeling upbeat and postive about how things are going. I am still trying to have a normalish social life outside of hospital. I really want to start been able to do some training.. I have put on a fair bit of weight and am looking a bit chubby, while I need to put on the weight I need to start building up the muscles again. Hopefully I will be able to do this over the next week or so... Otherwise I better cut down on the pies.
Lastly good luck to Wibbles & Emma who are expecting their first child any time now. Looking forward to seeing what you decide to call it (Wibbles: Goliath is unique, but I don't think Emma will let you name your child that).
Cheers
Robbie
Monday, 22 September 2008
Stop Press... Good News Day
Still in everyday for treatment, still waiting to find out if donor agrees to give me a top up, still waiting to find out if experimental drug gets approval. I would say I’ve settled into a routine this may be true for when I arrive at the hospital but each day I need a different top up so I can either be in 8am until lunchtime or in until 6pm if I need a lot of work done. So I cannot plan anything for the afternoons.
My parents and brother return from the Lake District on Monday. It sounds like everyone had a good time. They did quite a bit of walking so I think I would have held them back if I had gone. At the end of the day treatment had to take priority, Next weekend is Ollie Boulters wedding, I am hoping I will have finished with the daily treatment by then, however this may not happen. I will be quite annoyed if I miss this wedding… but treatment has to take priority! I have already asked the doctors but I think it’s going to come down to what my counts do in the coming week.
With my parents around I have more access to transport. In making use of this we go to Bristol Zoo. Its improved a lot since I last went (probably when I was about 8). I think we picked a bad time of day to visit. The animals had all just been fed and decided to hide and have a sleep. It was like playing where’s Wally to spot a lot of the animals. The seals were quite good as were the gorillas.
On Friday I go in for the standard treatment. I do however get some good news for the weekend. My donor has agreed to give me a top up. I thought they probably would, but its good to get it confirmed. I will never know who the donor is but I owe them so much. The time scales still need worked out but I’d anticipate I’d get the transplant within the next 3-4 weeks now. Fantastic news. Hopefully I’ll get good news on the experimental drug early next week.
To keep myself sane I am trying to get out and about as much as possible. On Friday I go to watch Bristol Rugby vs. Sale. On the previous 2 games and the players on paper Bristol should lose quite heavily. It is a close game ending 9 – 6 to Sale. Bristol should have won they had 60-70% possession but did not take their chances. Dan Ward-Smith showed signs of returning to form, and Neil Brew seemed to sort out the problems in the centres. The is hope for Bristol but they need to get a few results on the board otherwise they could find themselves in trouble at the end of the season. Brizzley bear was still rubbish. Their won’t be much competition when I’m fit again to return. After the rugby we go for a curry at Joy Raj. Was a good night, although the curry was not that good, the company made up for it.
Saturdays plan depended on how much time I had to spend in hospital. I was hoping to make full use of the sunshine and go and watch OB’s play at home vs. Painswick. For this to happen I needed to be out of hospital around lunchtime. If I needed any top ups then this would not happen. Lucky enough my counts were good and I could get out in time. I’m not sure if Painswick were poor or OB’s were good. But we won.
From the rugby I went straight to meet Jack, Dean & Sarah and Charlotte & Andrew. We were heading out for dinner. We ended up heading to the Bentley in Clifton village. It was very good food and was a very good night. I had a few drinks, which I think were well deserved after the last few weeks.
I am back in hospital on Sunday. That is 3 weeks of been in everyday. It is very boring but with the donor agreeing and if I get a decision on the drug soon then the TTP will hopefully be beaten. Then I can get back on track to recovering.
Its now Monday night, I could not post the update last night but have some fantastic news today which makes the delay worthwhile. I have got approval for the new drug, treatment starts this week and will last 4 weeks. After this I will get the top up from the donor. Provided the are no further complications this will sort me out. From experience I'm not going to talk about timescales but this is a massive step forward from where I was 1 week ago.
While I'm not talking about timescales to stopping regular treatment and getting back to normal, I am assuming that I'll be out by the end of January\early February. This will coincide roughly with when I had my initial transplant. I will be booking Racks for a celebration hopefully with Charlie Brooking's band playing. So watch out for a invite.
My parents and brother return from the Lake District on Monday. It sounds like everyone had a good time. They did quite a bit of walking so I think I would have held them back if I had gone. At the end of the day treatment had to take priority, Next weekend is Ollie Boulters wedding, I am hoping I will have finished with the daily treatment by then, however this may not happen. I will be quite annoyed if I miss this wedding… but treatment has to take priority! I have already asked the doctors but I think it’s going to come down to what my counts do in the coming week.
With my parents around I have more access to transport. In making use of this we go to Bristol Zoo. Its improved a lot since I last went (probably when I was about 8). I think we picked a bad time of day to visit. The animals had all just been fed and decided to hide and have a sleep. It was like playing where’s Wally to spot a lot of the animals. The seals were quite good as were the gorillas.
On Friday I go in for the standard treatment. I do however get some good news for the weekend. My donor has agreed to give me a top up. I thought they probably would, but its good to get it confirmed. I will never know who the donor is but I owe them so much. The time scales still need worked out but I’d anticipate I’d get the transplant within the next 3-4 weeks now. Fantastic news. Hopefully I’ll get good news on the experimental drug early next week.
To keep myself sane I am trying to get out and about as much as possible. On Friday I go to watch Bristol Rugby vs. Sale. On the previous 2 games and the players on paper Bristol should lose quite heavily. It is a close game ending 9 – 6 to Sale. Bristol should have won they had 60-70% possession but did not take their chances. Dan Ward-Smith showed signs of returning to form, and Neil Brew seemed to sort out the problems in the centres. The is hope for Bristol but they need to get a few results on the board otherwise they could find themselves in trouble at the end of the season. Brizzley bear was still rubbish. Their won’t be much competition when I’m fit again to return. After the rugby we go for a curry at Joy Raj. Was a good night, although the curry was not that good, the company made up for it.
Saturdays plan depended on how much time I had to spend in hospital. I was hoping to make full use of the sunshine and go and watch OB’s play at home vs. Painswick. For this to happen I needed to be out of hospital around lunchtime. If I needed any top ups then this would not happen. Lucky enough my counts were good and I could get out in time. I’m not sure if Painswick were poor or OB’s were good. But we won.
From the rugby I went straight to meet Jack, Dean & Sarah and Charlotte & Andrew. We were heading out for dinner. We ended up heading to the Bentley in Clifton village. It was very good food and was a very good night. I had a few drinks, which I think were well deserved after the last few weeks.
I am back in hospital on Sunday. That is 3 weeks of been in everyday. It is very boring but with the donor agreeing and if I get a decision on the drug soon then the TTP will hopefully be beaten. Then I can get back on track to recovering.
Its now Monday night, I could not post the update last night but have some fantastic news today which makes the delay worthwhile. I have got approval for the new drug, treatment starts this week and will last 4 weeks. After this I will get the top up from the donor. Provided the are no further complications this will sort me out. From experience I'm not going to talk about timescales but this is a massive step forward from where I was 1 week ago.
While I'm not talking about timescales to stopping regular treatment and getting back to normal, I am assuming that I'll be out by the end of January\early February. This will coincide roughly with when I had my initial transplant. I will be booking Racks for a celebration hopefully with Charlie Brooking's band playing. So watch out for a invite.
Sunday, 14 September 2008
Daily Slog
38 people took part in OB's pub golf. It was carnage. My outfit went down very well. Like stag do's pub golf is difficult without drinking\taking part. It was carnage and I left them to it after 9 holes.
Saturday was more civilised but still quite funny. I was in hospital in the morning and had arranged to meet people for breakfast around 12:30. From there we were going to head straight to the ground. People were meant to be going as cheerleaders. The only chance I had to get into my outfit was at the hospital. I had a very tight wonder women outfit. The nurses appreciated this. After turning up at POSH for breakfast I realised no one else had bothered dressing up for it. The outfit confused went down fairly well at the rugby but I was glad to get it off after as it was giving me a huge wedgie.
I had worried my parents describing TTP to them. They come over on Tuesday night. We have a meeting on Wednesday with Professor Marks and he goes through what my issues are again. No real surprises, although they are still not 100% certain what is going on. Despite the seriousness of what Prof Marks is saying it is hard to take him that seriously as the only chair he could find is a toddlers chair. The current treatment I am on is only to maintain my current position, apparently it won't stop the problem. That is up to my own body or the is a experimental drug with a very high success rate which could be tried. This however is not on the NHS approved list and would require additional funding. Fingers crossed I can get this.
My Dad has planned a weekend away in the lake district as it is my Mum's, Brothers (30th) and Sisters birthday. The lake district was a interesting choice as I can't climb hills at the moment. I would have ended up been a burden on everyone else as they would have either had to leave me in the pub or other things to do other than walking. In the end it did not matter as I needed treatment on the weekend so I could not go anyway. While I was not that disappointed to miss out on the lake district I was disappointed not to be able catch up with Helen (my sister).
I have been in hospital everyday including weekends for the last 2 weeks. I am very bored of hospital. I am in on Saturday but hope to be out to watch OB's play rugby in the afternoon. For once the suns out and its a perfect day for rugby. As usual whenever you plan anything something happens to get in the way. It is decided that I need blood top ups and platelets. I end up been in hospital until around 4:30. The first sunny day in 2 months and I'm stuck inside. Its so frustrating.
I'm in hospital right now. Hopefully I will be able to get out for the afternoon. My body does seem to be repairing itself but it looks like I have another 4/5 weeks of treatment. It will take at least this long to get the doner to donate more stem cells. While I was hoping to be back at work and putting my life back on track by now it is now looking unlikely like I'll be back until November\December. My arms and legs are now incredibly skinny. When I was wearing the wonder women outfit I had far to many girls complement me on my legs.
While it is pain been in hospital so much, it is a means to a end. Once I have sorted out this TTP and had a top up of my graft I will hopefully be set free. Apart from my leg the Leukaemia and TTP have left me fairly unscathed. For that I am grateful and once set free from hospital treatments I can set about getting myself back into shape. I am looking forward to been able to push myself in the gym\running and getting back to work. Its just a question of when can I start and trying not to overdo it. Hopefully this is just around the corner? Fingers crossed.
Saturday was more civilised but still quite funny. I was in hospital in the morning and had arranged to meet people for breakfast around 12:30. From there we were going to head straight to the ground. People were meant to be going as cheerleaders. The only chance I had to get into my outfit was at the hospital. I had a very tight wonder women outfit. The nurses appreciated this. After turning up at POSH for breakfast I realised no one else had bothered dressing up for it. The outfit confused went down fairly well at the rugby but I was glad to get it off after as it was giving me a huge wedgie.
I had worried my parents describing TTP to them. They come over on Tuesday night. We have a meeting on Wednesday with Professor Marks and he goes through what my issues are again. No real surprises, although they are still not 100% certain what is going on. Despite the seriousness of what Prof Marks is saying it is hard to take him that seriously as the only chair he could find is a toddlers chair. The current treatment I am on is only to maintain my current position, apparently it won't stop the problem. That is up to my own body or the is a experimental drug with a very high success rate which could be tried. This however is not on the NHS approved list and would require additional funding. Fingers crossed I can get this.
My Dad has planned a weekend away in the lake district as it is my Mum's, Brothers (30th) and Sisters birthday. The lake district was a interesting choice as I can't climb hills at the moment. I would have ended up been a burden on everyone else as they would have either had to leave me in the pub or other things to do other than walking. In the end it did not matter as I needed treatment on the weekend so I could not go anyway. While I was not that disappointed to miss out on the lake district I was disappointed not to be able catch up with Helen (my sister).
I have been in hospital everyday including weekends for the last 2 weeks. I am very bored of hospital. I am in on Saturday but hope to be out to watch OB's play rugby in the afternoon. For once the suns out and its a perfect day for rugby. As usual whenever you plan anything something happens to get in the way. It is decided that I need blood top ups and platelets. I end up been in hospital until around 4:30. The first sunny day in 2 months and I'm stuck inside. Its so frustrating.
I'm in hospital right now. Hopefully I will be able to get out for the afternoon. My body does seem to be repairing itself but it looks like I have another 4/5 weeks of treatment. It will take at least this long to get the doner to donate more stem cells. While I was hoping to be back at work and putting my life back on track by now it is now looking unlikely like I'll be back until November\December. My arms and legs are now incredibly skinny. When I was wearing the wonder women outfit I had far to many girls complement me on my legs.
While it is pain been in hospital so much, it is a means to a end. Once I have sorted out this TTP and had a top up of my graft I will hopefully be set free. Apart from my leg the Leukaemia and TTP have left me fairly unscathed. For that I am grateful and once set free from hospital treatments I can set about getting myself back into shape. I am looking forward to been able to push myself in the gym\running and getting back to work. Its just a question of when can I start and trying not to overdo it. Hopefully this is just around the corner? Fingers crossed.
Saturday, 6 September 2008
Prize Fighter
I had not realised I'd left it so long since I last updated the blog. For that I apologise. I can reassure you that I am still ok, although I have some new challenges to deal with.
First of all Ollie Boulters stag... I was not sure I was going to be able to make it. Counts were bad in the build up and I was in hospital everyday of the week leading up to it. Ollie is one of my close mates from Uni who I defiantly don't catch up with enough. After missing Stokesy wedding I really did not want to miss Ollies stag do as well. But at the end of the day the decision if I could go would depend on Fridays blood counts... I needed a immune system. My doctor was an absolute legend (she thought I was going to Bournemouth for a civilised weekend) and decided that she would give me top ups of all bloods on Friday morning so I would feel\have cover for the weekend and be able to travel to Bournemouth. I'd been talking about it all week with the nurses in the hospital. I'd promised them I would not take part in the paintball or any other dangerous activities. The only person who did not know it was a stag do was the doctor.
In regards to the actual stag do, I'm not sure how much I can say. Simon (Ollies brother) had done us proud and booked us into a hotel run by 2 crack addicts. The activities were good. I actually did manage to take part in everything.. The paintball was with catapults and teams took turns running away while others shot them. I just did the shooting so did not get shot myself. We then did clay pigeon shooting.. I was rubbish.. I blame the drugs. Lastly the was a off road go-kart track. This was brilliant. I could have spent all day racing round in these buggy's. After we negotiated our way back through the gypsy camp it was straight out on the lash (although I was still not drinking). In terms of the nights out I managed to last the night both evenings although it is very wrong doing stag do's without drinking. I don't think I can say much more about the rest of the stag do.
It was bank holiday weekend so it was not until Tuesday that I was back in hospital. I was on a new drug which was hopefully going to cause my blood counts to recover. This treatment finished on Wednesday (27th). On Thursday it was decided that it had no effect. After discussions its decided that I need to up my steroid dosage... I had been tapering down and was on 5mg a day. This was now increased to 140mg a day. Steroids are evil. They effect your mood, co-ordination, sleep and appetite. I can't get any sleep, I start to get down partly due to low blood counts (everything is more effort when you have little oxygen in your blood). Not knowing what is going on with your own body is extremely frustrating, and doctors not been able to give answers is not helping. Having hospital all dayers with little progress is starting to get to me.
The weekend brings the first serious rugby of the season. OB's are competing in a tournament at Bristol Barbarians. OB's on paper were one of the top 4 sides in the tournament. They did not disappoint and got through to the final. I think the team had run out of steam by the final as they were beaten by Aretians. A great effort playing 6, winning 4, drawing 1 and losing in the final. The draw was also against Aretians, we now know what to expect in the league so hopefully we can take revenge during the season.
Professor Marks was back from holidays on Monday. Hopefully he will give some better direction to my treatment and maybe I'll get some answers. I'm booked in for a lengthy look over on Tuesday. He still believes that I have TTP. Even the prof struggles to explain what this is. It is extremely complicated but amounts to my veins turning against me and destroying my own blood. My graft is thin so is not producing enough blood to replace what is been destroyed, hence my blood counts keep collapsing. The are 2 things that need to be done. Fix my veins and try and get my donor to give me a top up of stem cells so my bone marrow can produce more blood. I'm put on another treatment of plasma cells to try and fix my veins. This treatment once again means that I'll be in hospital everyday. Treatment starts Wednesday. Hopefully this will get me back on track.
Whilst I had been down, I have managed to pick myself up again. I've already beaten 5 different types of Leukaemia and a hospital superbug. If I was a boxer on my track record you would have me down to win. I may get knocked down but I'm back up again. As I said earlier I had let the constant treatment get me down. I remind myself of the success of the charity auctions, success of dodgeball all while I was fighting Leukaemia. I need a new challenge, I need to feel like I'm still achieving something. This time I want a personal challenge. Unfortunately fun runs and exercise based challenges are out as they will only promote the destruction of my blood. I had thought of doing a triathlon based challenge (spread the distances over a week rather than do in 1 go), but the doctors would never allow it. Any ideas\challenges welcome! My positive outlook starts to return.
The weekend approaching brings Steves house party, OB's pub golf and Bristol vs Bath. I have another distraction and massive cheerup. Its fancy dress!!!
Only Steves houseparty is not fancy dress. Me, Iain and Vicky pop along Friday night. I introduce them to Shoe Jenga. This is a game where everyone removes their shoes and places in a pile. 1 shoe is then placed in the middle of the room. Everyone takes a turn in trying to balance a shoe on top of the previous shoe. A shoe tower is formed and whomever knocks it over loses. Back home by 11 to rest up for the next day.
Its Saturday. I still have to go to hospital. Its pub golf tonight and my outfit needs a few final touches. I won't be drinking tonight but acting as course photographer. Its should be a great night out. Sunday is Bristol vs Bath. We are going to this in fancy dress as well. When I say we... I really hope I'm not been stitched up. The theme is cheerleaders and I can see me been the only 1. What would make it worse is the outfit I've got is a little to small, it does not leave much to the imagination. Also to make it more interesting, I will be in hospital in the morning and will be pushed for time to get to the arranged breakfast in time. So I need to have my fancy dress ready in hospital. The nurses are going to be treated to me been dressed as a wondergirl cheerleader (with a obscene short skirt) as I leave on Sunday! So the weekend should be entertaining to say the least. Depending on how bad my outfit is I'll put some photos up next week.
So I have plenty to smile about. But what has really made me smile this week is the support of everyone around me. Word spread that I was not doing that well again. People have rallied around me once again. Particularly thank you to Julia, Julie, Phillipa, Katie, Monty, Oly L & Iain.
Lastly... does anyone have any good ideas for Mothers birthdays?
I'll update by blog when I can after the weekend, but when I'm in hospital 8am until 6 it is difficult as I'm fairly run down by the time I get home.
Cheers
Robbie
First of all Ollie Boulters stag... I was not sure I was going to be able to make it. Counts were bad in the build up and I was in hospital everyday of the week leading up to it. Ollie is one of my close mates from Uni who I defiantly don't catch up with enough. After missing Stokesy wedding I really did not want to miss Ollies stag do as well. But at the end of the day the decision if I could go would depend on Fridays blood counts... I needed a immune system. My doctor was an absolute legend (she thought I was going to Bournemouth for a civilised weekend) and decided that she would give me top ups of all bloods on Friday morning so I would feel\have cover for the weekend and be able to travel to Bournemouth. I'd been talking about it all week with the nurses in the hospital. I'd promised them I would not take part in the paintball or any other dangerous activities. The only person who did not know it was a stag do was the doctor.
In regards to the actual stag do, I'm not sure how much I can say. Simon (Ollies brother) had done us proud and booked us into a hotel run by 2 crack addicts. The activities were good. I actually did manage to take part in everything.. The paintball was with catapults and teams took turns running away while others shot them. I just did the shooting so did not get shot myself. We then did clay pigeon shooting.. I was rubbish.. I blame the drugs. Lastly the was a off road go-kart track. This was brilliant. I could have spent all day racing round in these buggy's. After we negotiated our way back through the gypsy camp it was straight out on the lash (although I was still not drinking). In terms of the nights out I managed to last the night both evenings although it is very wrong doing stag do's without drinking. I don't think I can say much more about the rest of the stag do.
It was bank holiday weekend so it was not until Tuesday that I was back in hospital. I was on a new drug which was hopefully going to cause my blood counts to recover. This treatment finished on Wednesday (27th). On Thursday it was decided that it had no effect. After discussions its decided that I need to up my steroid dosage... I had been tapering down and was on 5mg a day. This was now increased to 140mg a day. Steroids are evil. They effect your mood, co-ordination, sleep and appetite. I can't get any sleep, I start to get down partly due to low blood counts (everything is more effort when you have little oxygen in your blood). Not knowing what is going on with your own body is extremely frustrating, and doctors not been able to give answers is not helping. Having hospital all dayers with little progress is starting to get to me.
The weekend brings the first serious rugby of the season. OB's are competing in a tournament at Bristol Barbarians. OB's on paper were one of the top 4 sides in the tournament. They did not disappoint and got through to the final. I think the team had run out of steam by the final as they were beaten by Aretians. A great effort playing 6, winning 4, drawing 1 and losing in the final. The draw was also against Aretians, we now know what to expect in the league so hopefully we can take revenge during the season.
Professor Marks was back from holidays on Monday. Hopefully he will give some better direction to my treatment and maybe I'll get some answers. I'm booked in for a lengthy look over on Tuesday. He still believes that I have TTP. Even the prof struggles to explain what this is. It is extremely complicated but amounts to my veins turning against me and destroying my own blood. My graft is thin so is not producing enough blood to replace what is been destroyed, hence my blood counts keep collapsing. The are 2 things that need to be done. Fix my veins and try and get my donor to give me a top up of stem cells so my bone marrow can produce more blood. I'm put on another treatment of plasma cells to try and fix my veins. This treatment once again means that I'll be in hospital everyday. Treatment starts Wednesday. Hopefully this will get me back on track.
Whilst I had been down, I have managed to pick myself up again. I've already beaten 5 different types of Leukaemia and a hospital superbug. If I was a boxer on my track record you would have me down to win. I may get knocked down but I'm back up again. As I said earlier I had let the constant treatment get me down. I remind myself of the success of the charity auctions, success of dodgeball all while I was fighting Leukaemia. I need a new challenge, I need to feel like I'm still achieving something. This time I want a personal challenge. Unfortunately fun runs and exercise based challenges are out as they will only promote the destruction of my blood. I had thought of doing a triathlon based challenge (spread the distances over a week rather than do in 1 go), but the doctors would never allow it. Any ideas\challenges welcome! My positive outlook starts to return.
The weekend approaching brings Steves house party, OB's pub golf and Bristol vs Bath. I have another distraction and massive cheerup. Its fancy dress!!!
Only Steves houseparty is not fancy dress. Me, Iain and Vicky pop along Friday night. I introduce them to Shoe Jenga. This is a game where everyone removes their shoes and places in a pile. 1 shoe is then placed in the middle of the room. Everyone takes a turn in trying to balance a shoe on top of the previous shoe. A shoe tower is formed and whomever knocks it over loses. Back home by 11 to rest up for the next day.
Its Saturday. I still have to go to hospital. Its pub golf tonight and my outfit needs a few final touches. I won't be drinking tonight but acting as course photographer. Its should be a great night out. Sunday is Bristol vs Bath. We are going to this in fancy dress as well. When I say we... I really hope I'm not been stitched up. The theme is cheerleaders and I can see me been the only 1. What would make it worse is the outfit I've got is a little to small, it does not leave much to the imagination. Also to make it more interesting, I will be in hospital in the morning and will be pushed for time to get to the arranged breakfast in time. So I need to have my fancy dress ready in hospital. The nurses are going to be treated to me been dressed as a wondergirl cheerleader (with a obscene short skirt) as I leave on Sunday! So the weekend should be entertaining to say the least. Depending on how bad my outfit is I'll put some photos up next week.
So I have plenty to smile about. But what has really made me smile this week is the support of everyone around me. Word spread that I was not doing that well again. People have rallied around me once again. Particularly thank you to Julia, Julie, Phillipa, Katie, Monty, Oly L & Iain.
Lastly... does anyone have any good ideas for Mothers birthdays?
I'll update by blog when I can after the weekend, but when I'm in hospital 8am until 6 it is difficult as I'm fairly run down by the time I get home.
Cheers
Robbie
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