Back on the roller coast ride

You don’t get to choose the ride in my Myeloma theme park you just get ushered into one queue or another depending on your bodies behaviour.

Unfortunately although the new trial drug Carfilzomib, part of the MUK5 trial, seemed to get my para proteins down to an undetectable trace it hasn’t stopped the soft tissue growth happening around my spine. This has continued to increase in size resulting in me being pointed towards another ride in my journey with this horrible cancer.

The plan now is for me to have a week or so’s radiation on this growth to reduce it in size before commencing on a new type of chemo and then progressing to the stem cell transplant. I knew this was always on the cards but it is happening a bit faster than I had anticipated.

Once again any planning goes out of the window and I have to follow the route set out for me. Hey Ho we will go with the flow and take each step as it comes.

I can’t fault the nursing care and the time both the doctors and nurses have spent explaining everything very carefully to me, listening and answering all my questions and doing all they can to make me feel as comfortable as possible.

It was great to have my sister by my side yesterday her support and kindness makes so much difference. In between the tears we could laugh together at the impromptu art class we suddenly found ourselves at or the men popping up at the window of my 13th floor room.

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It looks like I may be hospital certainly until Monday but perhaps for the whole week following that. If a I get lucky I will get moved to the Cotton Rooms which is the hospitals own 4* hotel. We will just have to wait and see. Last night Colin came up and slept soundly in the reclining chair next to my bed. My sleep was better although I am on the high dose of 40mg of steroids now for the next few days. The pain is being better controlled and the nausea is all but gone thank goodness.

This morning I have another MRI scan which I will be well dosed up on pain killers for as I shall be having to lie on my back for a good 40 minutes or so. Being in one of those tunnels isn’t easy at the best of times and it’s not made any easier by the regular hot flushes never mind the back pain. The afternoon will be spent on the ground floor planning with the radiation team. I will apparently get my first tattoo’s (beating my nephew Charles to it!) you get free tattoo’s in his theme park but I don’t suppose I get to choose the design. I think I just get four dots that tell the machines precisely where to aim there laser beams.
Who knows what else will happen today. I may pop out for a candy floss or play a game of Pluck the Duck and win 25p.

Talking about winning my prize of the variety case of 12 bottles of wine arrived yesterday. So we have a bit of a wine tasting party to look forward to. Who’s up for that?

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I hope you have a Good Friday and if you are going to a theme park it’s by your choice only.
If not and you are one of the unlucky ones to be in the Myeloma park good luck to you all I hope you are having a smooth gentle ride today.

Deborah x

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8 thoughts on “Back on the roller coast ride

  1. What a bumpy ride! I’m sorry you’ve got to stay in hospital, hopefully they’ll move you soon so you can enjoy a 4 star stay. Thinking if you. Sending big hugs and kisses. 😘

  2. Sounds like a really tough day. I hope it goes as well as possible. I’ll be thinking of you and wishing you comfort and strength

  3. Not a fun theme park at all Deb, but a good and brave analogy that I will not forget. Your Grandfather is so proud of you I know. Perhaps by now you are out of hospital: but wherever you are, sock it to that hateful myeloma, try a different ride, thinking of you lots and sending lots of love, cousin Nicola XO

  4. hoping you have good news this week, I’m looking forward to coming for that cuppa! Take care, sending you healing thoughts. Bernie xx

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