Bone Marrow Transplant day - minus 4

Hi all

Well I am now half way through the chemo in preparation for my transplant on Thursday. I have found it much more difficult this time, more side effects which has meant I haven’t been able to do much. The regime is really gruelling, I have been hooked up to drips of every kind for about 8 hours a day restricting movement as well as making me feel poorly. They also wake you up in the middle of the night for observations and to hook you up to yet more drugs. Some drugs have made me light headed and others have given me the runs which is not nice at the best of times and almost impossible when you have to take you drip and all its equipment with you!

I am in good spirits and trying not to think about the true enormity of what I am going through. I am taking one day at a time and dealing with that as well as looking forward to going home at the end of it all.

Any news of the outside world is always appreciated, but don’t expect a personal return unless I am feeling up to it.

Regards

Roz

Roz goes in for her transplant after lobbying MPs in the house

Rosalind came up to London to be admitted for her 'conditioning chemo' and transplant yesterday. The bed at Kings was not ready early on so she and her dad, and her partner Steve went to Westminster to the lobby area which is between the house of commons and the house of Lords. Richard's MP, Gary Streeter, kindly invited Ros and Richard to his office, had a long chat and took away a whole series of actions to assist the MDS group in getting NICE approval for azacitidine - see link for details.

 We also met with the personal assistant to Geoffry Cox, Roz's MP, who will also support the lobby.

Roz and Steve then took a taxi and went straight to the hospital, where she was admitted later in the evening.
This morning after X rays and other tests she starts her her conditioning chemotherapy, which will take 7 or 8 days. If all goes really well she might be out in 4 weeks, otherwise it will be 6 to 8 weeks.

Meeting at the lobby really helped Roz, as it kept her mind active and very positive prior to the admission. It is no use letting this get you down. Just be positive and let them get on with it.



 

Transplant date is set

Well I had packed my bags ready to stay in hospital for my second bout of chemo, Dad had come along to keep me company this week, only to be told by the consultant that I didn't need it! My blast levels have gone down to 2% so the first lot of chemo has done all the work. So I get three weeks at home before I go into hospital for the transplant and hopefully be home for Christmas, which was my original goal. The kids are thrilled as am I. The funny thing is that my white blood cell count is higher that it has been since I had my diagnosis last October, much to dad's annoyance as mine are now twice what his are but we are both still under the norm. We constantly compare our blood results, like most MDS patients, and brag about who has the best results even though we both have below normal counts.

The wig has gone down well, most of my friends thought it was my real hair but straightened. Of course various family members have tried it on. Isabel thought it was really funny having mummy's hair on and Robert, well you can see for yourself his appearance is much improved! It makes him look more like he belongs in the film Wayne's World!

Roz