My Story

I was diagnosed with CML in March 2005.I have been on glivec and bms and am intolerant to both. I have a sibling match so I had a 'mini' transplant on October 25th 2007. This was at the Royal Free Hospital under the care of Prof. Stephen Mackinnon. So far so good, all going very well.

Journal

Wednesday, July 1, 2009 10:52 AM, BST


Hi
Well I am doing ok at home. I spent the weekend taking it very easy. Naturally the novelty quickly wore off for the family and I was soon back in control. They had neglected my 'crops' dreadfully so they were in dire need of tlc. Thank goodness I have nurtured them back to life and I have some lovely looking courgettes (zucchini) and a bucket full of salad leaves. The rest of the stuff is coming along nicely. In fact this morning I repotted some of my tomatoes using compost that I had 'cooked' myself. Mike, of course, turns his nose up at all this. He was most put out as I wanted a new garden hose for my birthday. I managed to break the last one and felt guilty about buying a new one but now I have a lovely windy up one with lots of nozzles.  
 
We had a quiet day on my birthday but it was nice. On the night before we all 5 went out for dinner which was really nice to all be together. It was a bit much for me but it was nice to do. On MOnday Mike and I went to the coast, had lunch, sat in the shade, had a short walk and tea and ice cream and came home. It was very nice, not quite as exciting as I would like but I had felt pretty grotty in the morning so I didn't want to venture too far. I had loads of flowers, cards, calls and messages, which was so nice. Thank you all so much.

The breathlessness is pretty much the same and I have been feeling very 'not with it' especially in the mornings. I wondered if it was related to my blood sugars.

I saw the haem. yesterday. He took bloods, reduced my septrin, steroids, stopped the anti-inflammatories and said my oxygen levels were still low and it may take many weeks for them to come back to normal. Naturally he said it was unusual to get PCP. He thinks that the steroids have finally got rid of the joint pain, possibly the tiny bit of methotrexate helped as well. We are interested to see what happens to the pain now I have stopped the anti-inflammatories. I am to go back and see him in 3 weeks or sooner if necessary. He thinks I should be off work for a good few weeks which I was not happy about but he conceded I could go back when I felt able to. I will see how it goes. There is a lot going on at work and I do need to be around. 

I can't believe how unlucky I am to have picked up yet another bug. 
 
This morning I am feeling slightly better, no 'odd' feeling this morning and I actually managed to do some ironing for half an hour. It is quiet at home. Charlotte is back in Leeds until tomorrow, Amelia is in Israel, Simon has a training day and is studying for his driving theory test and Mike is abroad. The weather in London is hot, hot, hot and there is tennis on TV this afternoon!

So that's my news up to date.
Love
Susan 

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Hello,  

 

I love getting messages in the guest book,  it is lovely to hear from friends, old and new.

I have 'met' lots of friends this way.

 

Susan

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slleigh@sky.com

HOSPITAL INFORMATION

Calthorpe Ward
The Royal Free Hospital
Pond Street
London, NW3