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.