World Blood Cancer Day 2018

Well it’s been a week of contrasts for me. My long suffering partner went away with a friend for a week of R&R. I decided that while they we gone I would try and get out large hallway and spare room decorated. I put a shout out for help to my close friends and family and some very special people came and over the course of 7 days my house was transformed. I have some amazing people in my life. 

The week didn’t start well though. I had a Macmillan Unit appointment at my local hospital and was told my HB, red blood cells, had plummeted again and I needed a blood transfusion. So the next day I went back and received the gift of life from 2 altruistic strangers in the form of two bags of nice and juicy red cells. 

It’s weird thing that when you are so used to your blood counts being low that you don’t notice you only have half the blood of everyone else. Once you receive the transfusion though, you suddenly have all this energy. 

I want to say a huge thank you to all those people who made a difference to my life this week. You are an amazing bunch. I’d also like to encourage everyone to consider becoming blood donors and stem cell donors. #DKMS and #AnthonyNolanTrust have some great info about going on the registry and #MDSUK and Patient Liaison Sophie have loads of great resources about my rare blood cancer. Also #givebloodnhs will tell you about how easy it is to donate blood. 

Today is World Blood Cancer Day #WBCD and what a great day to acknowledge that and all who suffer or haven’t made it, I dedicate this post to them and all our supporters especially Gail Dawn Sally Jane Tina and Alan, Deborah and Barry, Mark, Annie, Keith,Tony and Maggie

Life saving blood saves Rebel Rev again

I had an interesting encounter yesterday. I met a new doctor to me at my local hospital. He is a haematology registrar and obviously likes to work out. He had muscles upon muscles. More importantly he was a nice bloke and very thorough in what he was doing.

My HB, that stands for haemoglobin which are the red cells, has gone low again. He told me I needed a couple of units of blood and he arranged for me to have them today.

He also said to me “so you have a heart problem” I said “not that I was aware of” We talked through all the bits and bobs that aren’t working so well and the things that are good too. He asked me why I was still needing blood and why my counts were still dropping. I said I didn’t know but that it keeps happening and that my last biopsy showed my bone marrow continues to be hypocellullar. He said “so the transplant hasn’t worked” I said that no one had said that but I have been told I need a close eye kept on and another repeat bone marrow biopsy in 3 months.

It’s strange when you see yourself through someone else’s eyes. It is odd that my red cells are still so troublesome and that I continue to need blood transfusions. It’s good that my platelets are holding up and my white cells are ok bearing in mind I’m still taking immunosuppressive drugs because of the graft verses host disease.

When you have blood you have to have your ob’s taken every 15 minutes. The first set of obs were taken by a friendly but matter of fact Eastern European nurse. She asked me if I had asthma or a heart condition. I said why and she said my Sats were only 95. I said maybe it’s because I need some blood. They’ve since come up to 96 which is still a bit low. Oh well that’s life!

I guess one day it will all become clear. In the meantime I am incredibly grateful for our NHS which continues to keep me alive and the wonderful women and men who work in this magnificent institution. I am blessed to live in a country with so many dedicated people and a health system that is free. Imagine how even more fantastic our NHS would be if it was properly funded. Let’s make sure we praise the dedicated men and women who do so much good in the world. I owe you my life and could never repay you for that.

Smile for the camera!

Well I’ve had an interesting day. I had to have a PET CT scan. This meant driving through rush hour London to get to the hospital for 9.30am. Once I’d checked it I was quickly taken round to a tiny curtained room with a reclining chair in it. I was given some medicine through my Hickman Line. They tell you there’s nothing to worry about but I did look twice at the metal box with the nuclear sign on it. Lol! After they injected the radio active ingredient I was told to rest quietly for an hour. I was not allowed to read or listen to music. This is because it will make the radio active stuff stick to the tissues I am using and stimulating and they want an image of how the tissues are when not stressed. So I dozed for a while.

I was soon on the scanner room. The scanner is a cross between a MRI tunnel and the CT doughnut. My head was held still by a contoured pillow and a band was placed across my forehead to stop me moving. I also had a wide belt strap my body down. They gave me a blanket because the room was cold but your arms have to be resting above your head. It was really hard not to shiver. It was also hard not to scratch.

The scan lasted about 25mins. After they asked me to wait while they checked the images. After 15 mins I went and reminded them I was still sitting there and they said I could go. I should get the results in a few weeks when I see the rheumatologist, earlier if there’s a problem.

Yesterday I saw the haematologist. That was a mixed bag. Regular readers will know I had a blood transfusion last week. That pushed my count up and I was able to continue with my ECP. Sadly I discovered yesterday that my counts have fallen again. They don’t know why this keeps happening. My EPO injections have been increased in strength in a bid to boost the number of red cells I have.  At present the epo I produce remains low. He also told me my immune system is low too and I will need some infusions for that if it carries on. They will continue to keep a close eye and may do another bone marrow biopsy in 3 months.

The good news is that my liver and kidneys are slightly better and everything  else remains much the same.

As he has increased my epo injections, the doctor also increased my blood pressure meds. I told him the thyroxine hadn’t improved my sleeping sickness and he doubled the dose of that too.

I nearly managed to sneak out without seeing the dietician. Lol. She was ok as I only lost 1/2 kilo this week. She is insisting on me trying a new supplement though. I’ll give it a go but no promises.

It’s all been a bit of a struggle lately. I really hope I start to feel better soon. Despite this I had a lovely weekend and enjoyed meeting up with my extended family and sitting outside in the warmth and fresh air.

I look forward to seeing many of you this week. Xx