Rebel Rev’s Poem for #MDSWAD

Today is MDS World Awareness Day #MDSWAD. Please do join us in tweeting about MDS and the people who live with it and the families and friends who support those who struggle.

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

Granddaughter suffers too

I didn’t get chance to post yesterday for the last day of #bloodcancerawarenessmonth #makebloodcancervisible. #lifewithcancer and #mds is always interesting. I could go on forever playing with the MDS letters. Today to the ones in the frame I would also add Many Diagnostic Specialists and Many Dedicated Supporters for My Daily Sojourns. Ok I must stop. Lol.

To bring you all up to date. I’ve spent the day at KIngs. My line is playing up and not giving any blood. I’ve called out dinarod and put some drains unblocker down the line. It’s fizzing away for half hour then we will try again.

Then I saw the delightful Victoria (consultant) She has had a good chat with the immunologists. They have suggested some more sophisticated blood tests. One of which is looking at a certain T-Cell that may be causing problems. I have to come back on Friday for these tests. She also wants me to stay on the high dose steroids for longer to see if that reduces the inflammation going on in my system. My counts are not too bad but my kidneys are not happy so some tweaks in medication is needed.

I’ve had a busy few days and I feel exhausted. My aches and pains are increasing as the cells come back in. Victoria doesn’t know what caused them to plummet. Working theories are that it’s either the result of an infection or it could be and autoimmune response. I just have to keep going until they get more answers.

As I write this, I’m sitting in the pharmacy. I’ve been here 30 mins already. They queried the controlled drug prescription because it didn’t specify that it needed to be capsules. Sometimes the rules are interpreted too rigidly. The young man was telling me I had to walk all the way back to haematology. Fortunately a woman intervened and said she’d sort it. The problem is they are dispensing up to number 359 and I’m number 334. It makes you wonder how long it will take to get sorted. I’ve been at Kings since 11.30am. It’s now 5.30pm. I’m meant to be taking my granddaughter to choir practice at 6pm in Plumstead. There’s no way I can do it now. It’s so annoying. This happens really regularly. People don’t realise the impact of all these appointments on the rest of our lives. It’s not just me that suffers but my granddaughter too. I find it so frustrating. Ok rant over. Will have to see what I can do to lessen the impact.

I wish you all Many Delightful Surprises that bring light and happiness to you as you live with your illness of support those who suffer.