Well here we are again. Another life saving blood transfusion needed. Two amazing strangers have donated life saving cells to keep me going to fight for another day. Thank you, who ever you are. If you are a current blood donor and donated A- blood recently, it could be you that’s saving my life. Ain’t that an amazing thought!
I arrived at the hospital at 11am it’s currently 6pm and I still have to have another bag of blood. I know today is the longest day but this is a joke. The next bag is due and will take 2 hours. Hope to be home for dinner at 9pm. Happy Summer Solstice everyone. I hope your longest day is also full of light and love despite the annoyances and frustrations.
So my latest is that last week in clinic my HB was 95. That’s a bit low but ok for me. This weds it was 90. Thurs it was 80. Now it’s 77 hence needing so many juicy cells. Let’s hope they make me feel better. I find it helps with the breathlessness but not so much with the fatigue. I’ve asked why this keeps happening and one possibility is the inflammation being caused by the GvHD could be making me more anaemic.
My lovely doctor was saying that what I put up with sounds horrible. It so lovely when medics get it and are empathetic. I’m not one to complain quickly. I had my sinus problem for around 8 months before I mentioned it. Unless it’s extremely acute I generally cope with things. The doc arranged a CT scan which has shown inflammation in my sinuses but what he was pleased about was the bone was in tact and didn’t have an infection in it. He was concerned that may be the case. The scan hasn’t been fully reported on yet so he is not sure what it all means but again thinks it can be GvHD.
Henry, the doctor went on to say that he wanted to talk about me at the multidisciplinary meeting and get a short term and long term plan in place. I certainly like the sound of that. He also said that even though the rituximab hasn’t made a difference to date it’s an important process to have gone through as it’s a stepping stone to the next treatments.
I’ve been pondering the bigger questions in life as I’ve sat here all day. I’ve listened to the air ambulance land and offered those situations to the light. I’ve collected tears from the young woman in the bed next to me who was in awful pain due to a sickle cell crisis. I’ve hugged and congratulated staff on promotions and pioneering new treatments being announced today. It was good to be here on the day when Kings and Cart - T therapy was in the news. Dr Potter came over really well. Congratulations to Victoria and all your heard working team. Is patients appreciate all your efforts.
The other thing I’ve been pondering is how we wear our illnesses and disabilities. There is a woman who comes here who looks awful every time I see her. I have never seen her look well. She is a frail timid woman who doesn’t speak to many people. She is often anxious too. It must be hard. Yet when people see me nurses and support staff, they all say how well I look (and that’s with half me blood missing). Maybe it’s that business about the lightness in the soul. I’m blessed with a warrior spirit and a fantastic soul. In that way I consider myself healed. I don’t have to be afraid going forward. I will either get well or I won’t. Whatever happens holds no fear and I will make the most of it. In that respect it’s vital that I keep my outside interests going and life doesn’t all become about me and my illness.
With that thought surging through me I am hoping to go on a little jaunt to Ireland soon with my long suffering partner. Some Kerry mountain and sea air will do me good.
When I think back all those years ago to the young woman that used to fly down the right wing when I played for Millwall and Charlton when all this started, I shake my head with wonder that I’m still here. So much has changed. I’ve survived sepsis on 10 occasions and septic shock once. I officially have more lives than a cat! I may only fly around in my mobility scooter these days but at least I’m still breathing and still doing some of the important things to me.
Right onwards and upwards to the weekend. Have a good one folks. Xx
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