This year we are expressing ourselves through poetry in a bid to raise awareness of MDS and the consequences of treatment. It’s not my forte really but I’m always happy to give these things a go. Here is my contribution :-
Myelo Dysplastic Syndrome the thief that stole my life
Myelo dysplastic syndrome my nemesis and daily strife.
The gift that keeps on giving from sepsis, fatigue and blood
To platelets, GCSF and transplants
I sometimes wonder how I’m stood
I long for a cure one day
Myelo dysplastic syndrome you have my body but not my spirit
I will strive, and wriggle and struggle,
my mind strong as I go through it
My family suffer as do my friends and that I really hate
Seeing the pain and worry on their faces as they wait to hear my fate
I long for a cure one day
Chemo and transplant offer a possible cure for some
You think all is well then GvHD comes along
Now my quality of life is poor and often rotten
I spend weeks and months feeling awful
Not wanting to hit rock bottom
I long for a cure one day
Strangely I can say it’s not always difficult and bad
People rally round and that makes me glad
I’m glad to be alive to see the grandkids grow
And I remind myself I’m still breathing when I feel low
Keep breathing Kes till they find that cure
I know Tina wrote a poem for today. Hopefully she will share it with us too. If any of you are budding poets or lyricists then do give it a go.
I’m sitting in a waiting room at Kings. The others here are waiting for gastric band assessments. They are glancing at me sideways and wondering why I’m in the waiting too. Lol. I’m just waiting for a prescription as I’m here I’m trying to do a few things all in one go. It’s amusing to see the perplexed look on their faces. Lol.
Today hasn’t all run smoothly. I was to see my lovely PEG nurse. It turns out no one way as expecting me. Sabina had emailed to change the appointment but unfortunately the email went to my old account that I can’t access any longer. Once she realised I was waiting for her, she came and saw me any way. That was very nice of her. It just shows how things can be sorted even when a mistake has been made. Between us we came up with a plan of moving forward. I’m so fortunate to have so many excellent staff in my corner.
After I left Sabina I went to get this extra prescription. I can’t get it from the GP because it’s a hospital only medication. Fingers crossed that the new hospital pharmacy system works better and I’m not left sitting around too long.
After this I’m off to see Nick and Jeanette. As well as meeting great medics it’s also true that we meet and become friends with other travellers whether it’s MDS, or GvHD or SCT we all have commonalities and yet are all so different.
So today is cold and dank and not the nicest of days on the outside. What can we all do to change that? My philosophy is whatever the weather, bring your own sunshine.
Please don’t forget to shout out to all those amazing MDS people and their supporters and share the love and light. Xx
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