A life saving gift

So another long couple of days being treated by our wonderful NHS. 

Yesterday I spent the day on the Chemotherapy Day Unit. I left home at 9.45am. I got home at 7.45pm. During the intervening hours I had my premed cocktail of painkillers, steroids, and antihistamine. Then I had my retuximab infusion. While this was happening they realised I needed a blood transfusion and a top up of magnesium. They tried to arrange it as it had to be done by Tues morning when I’m next due for ECP. 

As soon as the retuximab was finished they put up the magnesium. I hate having magnesium. It doesn’t matter how I try to get it in me, it has an impact on my system. If it goes in the PEG I have to dash to the loo straight away. If I try to swallow it, it makes me puke. The only way is via an IV and that makes me feel so hot and weird. They have to slow it down because it makes my heart beat fast otherwise. By the time that was finished it was too late to have the blood transfusion too. My ever helpful CNS Sarah was great and arranged for me to have the blood today. 

So this morning I head off at 9.45am again. Ambulatory care were waiting for me and had my bag of life saving cells ready. 

My neighbour was a man called Marshall who was an ace guitar player. He chatted to me non-stop for an hour. Lol. At least that first hour flew by. 

Thank you to whoever the life saving stranger is who gave me such a precious gift today. It’s much appreciated and I promise to use the gift wisely. 

This coming week I have 4 separate hospital appointments. If the staff are as lovely as they have been these last 2 days that will be no problem. 

Many people have asked what the new treatment is about. The idea is that the retuximab attaches itself to some specific white cells called B Cells. These are the buggars that cause the inflammation in people who have GvHD (Graft Verses Host Disease). The idea is that it dampens down their inflammatory response. It takes a couple of months before you know if it’s been effective and it effective in about half the people that have the treatment. Let’s hope and pray I’m on the half that benefits. 

Currently it’s making me feel rubbish. My muscles and joints really hurt. I yelped at one point today as I tried to pick something up and my wrist gave out. The other day, I went to get something out the fridge and came over really dizzy. I say down quickly before I passed out. When it was safe I stood again but my legs were really weak and didn’t want to hold me. It was a very odd sensation. I’ve learned not to panic in these situations and just let the feelings wash over me. I know it won’t last and I just have to wait until I feel better. 

So I’m half way through this new treatment and I’m stepping out in faith. The summer is coming and some of the best days of my life haven’t happened yet. What could be better. 

Thinking of all those who are struggling and those who have sadly died. I’m holding you in the light.