Monday, 8 December 2008

Fancy Dress Workout


Tuesday 16th December, Redwood Country Club, Beggar Bush Lane, Failand
Kick-off: Heat 1 - 19.30 (Entries already sold out)

Organised by Robbie's formidable rugby club, Old Bristolians, this fundraising event will be quite a spectacle with prizes not only for best time but also best turned out.

Further details can be found:

Please come along to support the commited athletes and help raise some well deserved money for CLIC Sargent.

Look forward to seeing you there


Tuesday, 11 November 2008

Robbie's Funeral Arrangements

Dear All

Firstly I must thank all Robbie's friends that have offered their support to us within the last few days, it is hard to imagine anyone but Robbie having such a volume of loyal friends.

We have now managed to get details of Robs funeral:

Date: Wednesday 19th November 2008
Time: 2pm
Location: Canford Cemetry, Canford Lane, Westbury-On-Trym, Bristol,BS9 3PQ

Reception to follow at Racks, St Pauls Road, Clifton, Bristol, BS8 1LX

The day is a celebration of Robs life and there will certainly be no black tie or sombre suits, being Robbie fancy dress is more than welcome.

Rob wasn't much for flowers and in the last 13months has spent a great deal of his time raising money for his charity of choice, CLIC Sargent, and so I would greatly appreciate that money that would have otherwise been spent on flowers be donated to charity either on the following link or buckets that will be available at Racks on the day:

We look forward to seeing all of you soon and only hope we can give him the send off he deserves.

Thank you

The Stuart Family

Saturday, 8 November 2008

Man of Steel

The brave and strong Robbie peacefully passed away today. He specifically requested to send you his last message

"Thank you for all your support and friendship. I lived my life to the full and count myself lucky to have known you. I hope you will remember me in as good light as I remember you.

Love you all"


We all want to give Rob a massive send off and although no details have been made yet as to funeral arrangements there will certainly be no sombre suits or black ties- fancy dress optional. His spirit will always be with us. Details of this will be updated here shortly.

Proud brother and sister

Iain and Hel

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.



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.


Sunday, 5 October 2008


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.

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).