Thank God for the NHS

What a day! I left home at 10.30am to set off for my first hospital appointment of the day. This was to see the ECP specialist. Today I was met with a delightful dr from Portugal. She was lovely and had a brilliant manner. She was full of energy and enthusiasm and extremely thorough. She treated my skin cancer on my back and checked out another lesion and said it was ok but had to be kept an eye on. The treatment was fairly painful but she was so upbeat it was contagious. 

One of the ongoing problems I’ve been having is sore, dry and cracked lips that peel and burn on a virtually daily basis. This is part of the GVHD. This lovely dr noticed that and I’ve been prescribed some heavy duty cream that you can’t drink alcohol with. The list of side effects is endless. Who would have thought a lip cream could be so toxic. Oh my days! Let’s hope it does the job. 

Next I had ECP. As usual only one lumen was working so it all takes longer. It was my 7th cycle of ECP. As this was day 2 I also had to have a dressing change. I’d like you to imagine you have sensitive skin. Now imagine having a plaster on it. The plaster or dressing has to be changed once a week. The longer time goes by, as it is peeled off, the skin becomes more irritable and raw looking. There are still 4 stitches holding everything in place as well as the hole that the line goes in. Next, to add to the experience, is a rub down with an alcohol solution. This can make the bravest soul wince. It really does sting. The worst thing about it is you know you are going to go through this every week for at least 6 months and the skin is only going to get more sensitive. These are some of the hidden issues to having to live with cancer and it’s aftermath. 

I managed to eat half my lunch whilst attached to the machine but I did enjoy the tea and biscuits. 

Next I had to get in my car and drive from Guys to Kings where I saw one of my lovely consultants. Kavita took one look at me and said “I don’t like the look of you this week” She loves me really 😉 She told me my bloods were giving cause for concern. I’ve lost about a 3rd of my red cells and the marker that tells them red cells are being destroyed is raised. She has adjusted some of my medication to see if this halts the slide and wants me to come back for a review on Monday. If things are still low I may need a blood transfusion or some injections of a drug that boosts red blood cells. Then she wants to see me again the week after that. I think they just like having me around. Lol. 

I was also seen by the dietician and my CNS, all of whom are great people and very reassuring. That’s one of the reasons why I am supporting 

#myCNSmatters

I finally got home at 7pm. I managed 2/3rds of my dinner before heading up to bed with a cuppa and some chocolate. Everybody knows that love and hugs and a little bit of chocolate make the world good round. 

Can you imagine how much all that cost today. It’s £3000 just for each cycle of ECP! Good job Richard Brandson isn’t in charge of healthcare because I don’t think I’d qualify for cover. Thank God for the NHS and thank God for so many amazing medics. Everyone I met today was a credit to their profession. It was clear that in some places they were short staffed but they continue to be friendly, professional and really dedicated human beings. Thank you so much for making my long day so enjoyable despite the sore bits and the bad results. You deserve a huge pay rise and all the recognition I can muster.