My consultant has confirmed that the CT scan showed lung GvHD as well as infection. He is keen for me to continue with my ECP even though I don’t currently have a line. He wants a new line put in ASAP but it won’t be in time for this weeks treatment. That means I will have to endure the horrible process of being cannulated with as large cannulas as they can manage to enable the machine to work. Last time it took an hour just to get two cannulas in and then treatment was slow because they had to use smaller needles on me otherwise my veins blow.
As I’m at Guys cancer centre for the next 2 days I thought I’d better ring audiology and confess to having lost my hearing aid. They were lovely and have agreed to see me tomorrow before my ECP. She did say she thought they had a couple of spare hearing aids. I cried with relief. The thought of having to go back to the old style hearing aids and the lesser quality of sound was almost too much to bear.
The consultant also told me I need some immunoglobulins. Most people would have no clue what a vital role they play in our bodies. I had to have some once before. I’m very fortunate to have access to all this expensive medication and treatment. Yet again I owe a debt of gratitude to the NHS and the amazing array of highly qualified staff from all over the world, who have and are, saving my life all over again. Collaboration with European partners on scientific studies, clinical trials and research has also played its part in keeping me going due to the rare nature of my illness. Being part of something bigger means progress is made quicker for everyone. I do fear what Brexit may mean and the implications.
I’m slowly reintroducing my feed as I’ve lost another 5kgs which I can little afford. This means needing to be close to the loo again. Sigh!
I had hoped to be able to go home today but have been told they love me so much they want to keep me till the end of the week. I’m going a little stir crazy in this room. Even prisoners get an hour out of their cells each day. Lol. I had some viral swabs done today and if they come back saying I’m no longer infectious I’ll be able to have a little wander.
It was lovely to see my sisters Gail ans Dawn yesterday. A rose between two thorns. Lol. Dawn managed to see Kinky Boots on its last day and got me some funky kinky boots socks. Fun eh?
As many of you will have seen, my lovely friends Richard and Lyn started a fundraising page for me. As I didn’t set it up, I can’t see who has donated but I can see the grand total. I am so blown away by such kindness, compassion and generosity. I am blessed to be surrounded by such love. You have all made me cry happy tears. I’m turning into a sook! Apologies for not being able to give a personal thank you but just now you have made my soul smile 😊
Here’s hoping that each day sees an improvement and I’ll soon be looking for mischief to get up to.
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