There are some weeks when I can’t decide if it’s a good or not so good week. Does that ever happen to you?
Last weekend was nice. It was my brother-in-laws 50th birthday. We all had a lovely time celebrating. I even had a little dance with my sisters as I was still feeling the benefits of my blood transfusion.
Then it was as back to more routine matters. The week started with a visit to the haematology team. I saw my lovely consultant who I haven’t seen for a while. She’s an amazing woman and just ran The London Marathon for the MDS UK Patient Support Group. What a star. Any way, she picked up that I needed another lung function test. She also reviewed my recent heart scan. Apparently both valves are leaking slightly but that’s not worrying her. What concerned her is that the pressure was highly in the top right hand side of my heart. She said it could be my line, in which case it will need to be changed but whatever it is it will need investigating.
So I find myself being referred to yet another specialist to be prodded and poked at some point in the future. I don’t know what to make of it all really. I guess all I can do is keep processing it and it will eventually sit quietly inside m alongside the long list of other bits of me that no longer work properly since my heavy Chemo pre-transplant.
The other thing she told me is that I will need an endoscopy. This is where you swallow the camera. She wants some biopsies taken from where my stomach goes into my duodenum. Apparently that area showed inflammation on my recent PET scan so she wants it looked into. Those things are horrible. I’ve had so many. I will try and remember to smile for the camera.
I’ve got my usual 2 days of ECP on Weds and Thurs this week and I approach it feeling slightly frail. I’ve now lost 17 kilos since the transplant. My appetite is very sporadic and quite small. Some days, like today, I can’t be far from the loo either. My kidneys are struggling to cope with it all. I’m also not at the right level for my levothyroxine yet and I’m sure the symptoms from my under active thyroid are contributing to my general feeling of malaise.
You would never imagine that itchy skin could drive you to tears but that was the case for me the other day. I put on all the lotions and potions they tell me to, as well as take the medication but every now and then, it gets really bad. Combination of maybe a touch of GVHD, the awful dry skin you get post transplant and the under active thyroid. In the end I crave sleep knowing that if I scratch in my sleep I’ll make it much worse and wake myself up.
Despite all these challenges I love spending time with my family and friends. It gives me a real boost to do something ordinary. Recently 7 of us went to see Star Wars - Solo. I’m planning on catching up with other friends over the summer too.
I’m also flexing my grey matter a bit. I’m doing a service a month in the parish of All Saint’s Maidstone with St Phillip and St Stephen. I’m looking forward to getting to know the people and having to be spiritually disciplined and write sermons again. Another plan is to be part of the Day Chaplains Team at Canterbury Cathedral. It will be so good to be exercising some sort of regular ministry again. It’s been too long.
Wherever you are and whatever you are doing may you find comfort in the darkness and happiness in the light and love of friends, family and strangers. Xx
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