One thing that living with cancer and the consequences of treatment has done for me is being me into contact with individuals and organisations that I would have never met. Today was testament to that. I met some great workers from Anthony Nolan and was able to participate in a photo shoot for some publicity material for them.
I was very happy to do this because they do such an amazing job of raising the profile of blood cancer and stem cell transplants. It’s always good to give no matter what. It’s especially good to give when you are trying to put something back into an organisation that has saved or extended countless lives.
I also had clinic today. I saw the very dedicated and supportive Victoria and Henry. Before that I had my PEG site evaluated by the nurse specialist. Sabina is also a great person to have in your corner. She checked it all out and said she felt it was infected. She also said that the previous advice, given by microbiology, wasn’t right for my circumstances. When my last swab was taken it came back saying they had detected thrush. They (microbiology) thought this may be skin contamination and no treatment was advised. Over the last two weeks the pain and oozing has gotten much worse. Sabina said that in future to be aware that as I’m immunocompromised and symptomatic, treatment should have been started. I now have some strong antibiotics and stronger anti fungals. I also have a manuka honey dressing with a foam dressing on top of that held in place by some opsite. It really is painful. I nearly yelped when Sabina moved the tube. I had to be scraped off the ceiling. Let’s hope all that does the trick. It’s even more important to sort it out because I’ll be away for a couple of weeks and really don’t want this causing problems.
The good news is my counts have held up well since my last transfusion. The odd thing is my iron is low, despite the numerous transfusions I’ve had which should mean it goes high. The working theory is that the gut GvHD is stopping me absorbing. When I come back I will have an iron infusion and see if that helps.
Sadly my GvHD remains poorly controlled. As I write I have a really awful stomach ache and need to keep disappearing to the loo. My skin is very fragile and really itchy. I have a permanent sore throat, mouth and gums. My legs are painfully stiff as are my joints and I’ve been fairly wheezy too. What an old crock.
Despite all this I had a lovely weekend just gone and was unusually out fri, sat, and sun night. This weekend coming I’m away singing in Norwich Cathedral all weekend. Even when you feel rubbish, it’s important to do things that take you out of your self. It would be easy to become insular and that makes you concentrate on how crap you feel and, in my opinion, that makes you feel worse. Balance in all things is key, even in life limiting serious illnesses.
Victoria and Henry have increased my immunosuppression drugs and we all hope that will improve my GvHD symptoms. Sabina is arranging an ultra sound to check what can’t be seen under the PEG site. I’m really fortunate to have such knowledgeable people working with me to make my life easier. Let’s hope this starts to work soon as I’m dog tired from the bearing the weight of it but extremely grateful to the NHS and all who care, that I’m still here and breathing. Also that I access all this treatment promptly and for free. Thank you just doesn’t cut it but it’s all I can say. You are stars!
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