Sorry for the black humour, years ago l wouldn’t particularly of broadcast my age but writing this blog has made it significant because l have faced several occasions durning the past two and half years where the doctors have had very difficult conversations with us. It is only down to the skill of those looking after me that despite a failed transplant l am still managing a reasonable quality of life, not to mention still here !
I continue to have weekly transfusions, but Dr.P has now set my chemo every eight weeks to see if my platelets and haemoglobin might have a chance to recover somewhat. One doesn’t know if the leukaemia cells are being hidden behind the
Azacitidine (the chemo treatment l have). I am happy to give this a go as my veins are getting rather worn out from continued cannula’s. Less frequent transfusions would be welcome but it’s early days.
During my last appointment at Kings college l had a blood test to see what the chimerism showed. I can only claim layman’s knowledge ! This should show if any of Heathers cells are active.The results did not show any improvement from the last time l was tested for this. Heathers cells do show in the T cells ( a subtype of white blood cell ) but the CD15 did not show any, l believe that is the bone marrow area.
My bone marrow is producing rotten cells that are just not wanting to be friends with Heathers. Now my interpretation is subject to artistic licence … I ask a lot of questions, Google a lot but sometimes get lost in the haematology world.
On the up side for the past three weeks my white cells and neutrophils have gone up and held fairly well. Oh the science, if only we knew how interpret this.
I have talked before about the MDS support group and the help and support they offer to people diagnosed with MDS. I understand this charity was only started in
2005/6, many of the committee members have MDS. I was diagnosed in 2008 so was
fortunate, along with my family to learn a great deal of what we were dealing with from the beginning.
MDS is still a fairly unknown cancer. Recently our Chairman, Professor Rodney Taylor died. One of his most significant achievements was gaining the approval from NICE ( National Institute for health and care excellence) for the drug Azacitidine . I mention this as l am about to embark on my 12th cycle of this drug. Just one area of work the charity touches.
This takes me into another link of fundraising. Annie’s family are taking part in the Kew 10k run, raising money for MDS. It’s wonderful that they would take the time to
train for this, Georgie and Henry do run, but l fear a few summer beers may have to be missed in the name of fitness for Charlie and Will ! Seel is juggling around a demanding job and baby, they all have busy lives. The commitment by all who fundraise is amazing.
The Gould fundraisers below.
Any donations however small would be most welcome !
Lastly you maybe wondering how my list of 60 things to do this year is developing.
I think a couple caused raised eyebrows with Dr.P not to mention Heathers eyes popping out during my last consultants appointment, helicopter ride, plane simulator,
Micro flying…. Hum, as l am prone to bleeding this may need a rethink. However l have been given a great alternative to think about…. I will save that for a later blog.
Some items l have achieved !
My neutrophil count going up meant l could eat smoked salmon and eat out a little more which l have taken full advantage of.
My friend Paula from Dallas visited, also Fran from the BVI so l did river trips with both of them (does that count as two?)
A visit to Kew Gardens.
Below Annie and Paula at Kew.Jools Holland concert at Hampton Court…. It was wonderful.
Below Heather and I at Jools Holland Concert at Hampton Court
I probably need to write another blog on this list alone, l am still 27 items short but the list is growing. Funnily enough most items take planning around chemo weeks and pacing myself around low haemoglobin times etc.
Every significant occasion seems like an achievement however large or small when you have terminal cancer, it is wonderful and fun to spend these occasions with my family and friends. We are having fun with this list !