First off I should explain my #makebloodcancervisible and #bloodcancerawarenessmonth contribution about #mds and #lifewithcancer. I think when you have stared at the grim reaper and looked deeply into your mortality, it makes you appreciate things that maybe you took for granted before. These days not only do I notice beautiful sunsets but I take a picture to share it with others who may have missed the beauty of nature. There is always something beautiful to look at if you have eyes to see. The pile of pills is my morning dose. I take even more in the evening. Medicine is a necessary evil of living with such ill health. Not only do you have to take stuff to keep you breathing and stop you getting ill or rejecting the transplant, you also have to take other tablets to counteract the side effects of the essential meds. It can be a real challenge if you feel sick to try and swallow all those pills. It’s also hard to find a drink that is ok to mask the flavours with.
For me, lately I’ve had to practice what I preach and sit in the darkness waiting for some answers knowing that the darkness will not overtake me. So what is it that’s so big that even the stoical me was a bit perturbed? As regular readers are aware my counts suddenly bottomed out and my bone marrow was empty. This led the doctors to the opinion that there was a strong chance my transplant had failed and I would need a second transplant. The thought filled me with dread. The transplant saved my life and I will always be grateful to the medics and my little sister for keeping me breathing and giving me a second chance of life. It was a really gruelling process and not one I’d like to repeat. Of course I would go through it again because it would beat the alternative but I would have more trepidation because of knowing what’s to come. So that’s been the case for the last month and I’ve been trying to get my head around it and give those closest to me time to adjust before I went public with the news.
Now to bring you slap bang up to date my counts seem to have returned and things are not looking so sinister. Instead of talk of a second transplant when I saw the consultant this week, it was decided that I would take high dose steroids and start my ECP again. The medics are perplexed about what’s happening and are digging to see if they can find the missing piece of the jigsaw to work out what’s causing my problems.
Wow what a month it’s been. It just shows the importance of not allowing your worry to grow as things can change. Sometimes you just have to sit in the darkness and find yourself held. This is the poem I use as times like that. I share it with you in the hope you find it helpful too.
And You Held Me
and you held me and there were no words
and there was no time and you held me
and there was only wanting and
being held and being filled with wanting
and I was nothing but letting go
and being held
and there were no words and there
needed to be no words
and there was no terror only stillness
and I was wanting nothing and
it was fullness and it was like aching for God
and it was touch and warmth and
darkness and no time and no words and we flowed
and I flowed and I was not empty
and I was given up to the dark and
in the darkness I was not lost
and the wanting was like fullness and I could
hardly hold it and I was held and
you were dark and warm and without time and
without words and you held me
Janet Morley
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