Saturday 25 October 2008

All Aboard Noahs Ark!!

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

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

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.