The decline begins….

Day +2

As the chemotherapy has now had a chance to work on my bone marrow we should now see all my old blood cells die off, as no blood cells will yet be produced by the new stem cells. This means that all of my blood counts will work their way down to pretty much 0. In the next few days I will have no immune system and I will rely on supportive care such as Red blood cells and platelets. Here’s the progress so far:

09.01

Since the stem cells infusion I have remained well. I’ve had a few mini fevers, but nothing that isn’t considered normal or thought to be an infection. The chemo is starting to show its effects, but only in a minimal way. I’m feeling more tired and achy, I feel constantly full and bloated with no appetite, and everything tastes nasty!

As I think I’ve said before chemo isn’t very choosey in which cells it destroys and it will work its way through most of my fast dividing cells (hair, mouth, stomach, gut, skin). At the moment my mouth is starting to be affected which is called mucositis. My mouth is all fuzzy inside, I have a constant horrid taste and bits of skin (like the white bits you get on the inside of your cheek) are coming off in lumpy bits (gross!!). This is currently VERY mild mucositis. Muscositis can get nasty…….. it can be incredibly painful with raw skin and ulcers making it too painful to eat or drink. It can also get infected easily with bacteria or fungal infections so its really important to do good oral hygiene with all the mouthwashes provided by the hospital. These are horrible but trust me an infection in your mouth is much much much worse!!!

On a positive note the doctors have reduced my ciclosporin dose so I feel much better as my tremors and BP have reduced. I’m still not quite convinced its low enough, but guess its not really worth reducing it too much in case I reject the new cells!!

In summary though I’m doing stupidly well so far considering the poison i have been pumped full of….. I’m still managing to eat and get outside for some walks, although not quite my 10km from previous days!! I’m still remaining mostly positive, although the tiredness has started to make me a little bit grouchy! Long may it all continue!!

 

 

 

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10 thoughts on “The decline begins….

  1. Kelly-Anne

    Hi Emma, so pleased to see how well you are doing finally caught up wih all your posts. I like the note to us, making you sit up for your blood pressure at 2am, meanies! Haha but sounds like you are being well looked after and you’re looking well. Look after yourself and I look forward to your posts as and when. I’m only sorry the last time you were in I only saw you in passing and never got to catch up.
    Kelly-Anne

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    1. No worries kelly! I will be back at pch in a few weeks (as an outpatient hopefully!) so we can catch up then! X p.s. I’m now having to convince them that my blood pressure is really high from the Ciclosporin and I’m suffering!

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  2. Ros and Pete Henshaw

    Hi Emma
    You have incredible resilience. Well done for doing as well as you are.
    Thinking of you and willing this soon to be over so you can get on with being well. Xxx

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  3. Chris Onions

    Hi Emma – just keep right on doing what you’re doing and and fighting to get better. You have a lot of fans well wishers out here.

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  4. Alex Owens

    Hi Emma

    From the whole team at Sainsbury’s we would like to pass on our best! Amazing resilience and unbelievable spirit. Our thoughts and wishes are with you. Fighting spirit indeed.

    From Alex and the rest of Sainsbury’s Customer Insight Team

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  5. Diana & Pete Graver

    Well done Emma. You are doing so well. I do hope that you continue to do well over next few days & have a walk in the park if you can. I have one nasty mouth ulcer @ present. I can’t imagine how painful your mouth will get. Thinking of you lots xxx

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  6. Diana Lockyer

    Well done Emma. You are doing so well and are an inspiration to so many of us fellow sufferers. I have a large painful mouith ulcer at present. That is bad enough so I can’t imagine how you will be feeling in the mouth later on. Hope you are still able to walk in the park for a little while longer. We are thinking of you constantly.

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  7. Sarah

    Hi Emma, extra special thoughts & vibes for you this week as you go through the pain of getting better. You are entirely within your rights to feel a bit grouchy some days, but as always your positive spirit is an inspiration to many (and can only be good for your healing & progress). Love & prayers, Sarah xx

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  8. Suzanara

    Hi Emma, sorry to hear of all the problems you are going through,really admire your fighting spirit, you’re amazing! Thinking of you and sending you healing and love xx

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