The 13th & 14th; “Sorry. You just have to go home and die.”

The 13th of July. 

Today has mainly revolved around writing about yesterday and putting in eye drops/using the cooling eye mask. My eye is marginally better but definitely no make up today. I think it will be okay by Friday.

There was so much to write about yesterday that it has honestly been my only activity of the day. I stopped to eat lunch, and for us to go out to liver clinic. My appointment was half past two, and I didn’t get to see James until just before four. He’s too popular! But in the meantime, we talked with Kirsty, Monica and Philippa. Monica got slightly teased about being on tv but it was all out of love. 

When we finally heard my name called, the first thing James brought up was the most recent letter from Andy Toogood. It’s so recent, it was only written on Monday and we haven’t actually had it yet. It seems that my x-ray has at long last been reported on, and it is not good news! It shows a “marked degenerative change” in my lower spine. He has discussed it with his colleague, Mr. Harland, a spinal neurosurgeon, who wants an MRI and to see me in his clinic, so I’ll get some other letters too. And maybe I’ll have spinal surgery. 

From a liver point of view, all my tests are really great and boring, so he couldn’t be happier! Back in six months, when he will have another new baby to show me pictures of!

At home, I have been scribbling away. Finished just before dinner, and now I have to complete my talk for Friday so I can email some notes to Ian tomorrow!

The 14th of July. 

My eye is improving. I can tolerate light now, for the most part, hoping I will be capable of wearing mascara tomorrow. 

I spent my morning writing up my notes to send to Ian and Anneliese from Anthony Nolan so they know what I’m planning on saying, and I had to find the original versions of some photos of me having my transplants, because the ones I had were not of reasonable quality. 

Speaking of transplants, I learned today that NHS England is no longer going to be routinely funding second stem cell transplants for those that need them. They are, apparently, unaffordable. What is affordable is a prosthetic penis if you have erectile dysfunction. If your cancer comes back and you need a second stem cell transplant? No, sorry, your life is not worth saving. If that had been the case in 2008, I would have been told the same thing as my grandmother sixty years ago – “Sorry. You just have to go home and die.” How can that be the case? That advances in science makes these treatments cheaper and our knowledge means we can perform them better, but now we can’t afford to save the lives of the very people that donor drives and research is being done for? I accept that I am now unfixable, but that is because my body is simply not up to it. If I were being told that there was a good chance I’d be alright if I had a particular treatment, but I wasn’t worth the money it would cost, I would feel very differently. We spend millions and millions of pounds treating self-inflicted diseases, smoking and drinking, but we can’t pay for people who have had no part in their life-threatening illness to have a second chance. I don’t understand. I don’t want to. 

What I want is to change it. I don’t accept it. With Anthony Nolan’s support, I will not be letting this go. If we spent the amount of our GDP on the NHS that Germany does, we could vastly increase its budget. Even Portugal, whose economy is not looking fabulous, spend more than we do. The government continue to bang on about how well the economy is doing, but they keep cutting away at health and social care, two sectors that desperately need each other, and the system is just going to break under the strain, and soon. We might have a new Prime Minister, but Jeremy Hunt is still in charge of the service with which we entrust our lives. I cannot just worry about this. I need to do something. 

The 13th & 14th; New line day!

The 13th of July.

Spent all afternoon writing up blog posts about holiday and now have to write about today! Well I had lorazepam but my body wasn’t really playing ball so I woke up at nine, despite my best efforts to stay asleep.

This morning I half-watched Sunday Brunch and Mommy washed my hair because it was disgustingly full of product. I haven’t been able to do much that requires memory or skill as lorazepam just completely removes that, so I’ll have no real knowledge of what’s happened today.

Becky and James came over and we exchanged stories of the week and we gave them their holiday presents.

The majority of my afternoon has been me typing up blog posts to be posted in stages, and having a brief look at my medical notes from BCH, knowing there was no point trying to retain any of it. Will read through them again when I am more compos mentis.

People are going to rummage around in my chest tomorrow. Then I’ll finally get some photopheresis, but not before I’ve had to go back up to 15mg of pred and negate all the hard work I’ve done. Fucking doctors.

The 14th of July.

New line day! I woke just in time to stuff a bagel in my face and finish it at 7.59am, since I had to be nil by mouth from 8. No coffee (dying), no anything. Needed distractions so we went to the sorting office for me to pick up two letters from BCH with my radiology imaging and the password so that’s exciting.

We came home so Mommy could go round the corner to look for a card for Pam, then we went to town to get some cards for me to give to people, a nice sandwich for when I was allowed to eat again, a CD-reader for the iMac, and some cotton pants from M&S as I forgot you have to wear them for surgery and I didn’t want the paper pants again. I did end up with styrofoam slippers though.

Then it was off to ambulatory care where we didn’t have to wait too long – I was first on the list and went down at quarter to two, saw the man who did my last line and we confirmed that I was having an apheresis line and some woozy drugs and once we were set up and he was in, I had some Midazolam and fell asleep until it was over.

Then I had to stay on the bed for two hours and sit in the chair for an hour before I was allowed to go home so we finally left at about six! Long day.

He’s put it on the same side, so I’m really quite achy. Paracetamol before bed.

 

The 19th & 20th; Line removal day, surgery GIFs within.

The 19th of June.

I slept a little later today – I woke up closer to half five than five. I got up at seven because I wanted to get a workout in before we went to the QE for half twelve line removal.

We went out just before twelve to give us time to park and get coffee before going up to 621. We waved at Sharon when we got there and she went to ring Susie, the doctor who was going to come and do it. She was on her way so promptly appeared, and just talked me through what would happen as I’ve not actually had to have a line removed like this before – previous ones have happened under GA or mild sedation in theatre. This was in a side room on the ward. It was fairly unremarkable: I lay down with a gown covering my modesty, she jabbed me a few times with some local anaesthetic, then made a small incision. There was some tugging and rummaging, and she snipped all around the cuff that had embedded, then she cut it into two and made me take a deep breath in, then she pulled it out on the exhale. She then applied some pressure for a few minutes and stitched me up! No pain, no dramas. I got re-dressed, had a look at the line but there was no obvious visual problem, and we left. I got Mommy to take photos all the way through because I couldn’t watch without getting my head in Susie’s way.

When we got home, we had lunch and watched things on the box. As fine as I feel, I know I do need to rest so tomorrow will be a quiet day too. Just have to wait for a slot for my new apheresis line now!

The 20th of June.

Nice day! My Zopiclone plan didn’t work (I was going to take it when I woke up in the middle of the night, and it would knock me out for a bit longer, but I still was up at half seven) so I’m just going to have to deal with that. I think lorazepam would work but that is really a last resort.

My chest doesn’t hurt too much, and it’s a bit strange not having to move the line out of the way, but I’m sure that will change soon enough. I’d cancelled my session with Danny because I did not think it would be wise to put stress on my arms/chest, so I’ll see him next week (well that’s the current plan, we’ll see when the new line gets put in which I’m sure will scupper matters).

Mommy wanted to go to the O2 shop as she had questions about her phone, so we did that, I got some pants and pyjamas from Topshop, and we bought some cards from Paperchase, because we need to sent Christine one to congratulate her on her new job! She rang and I answered Mommy’s phone as she wasn’t there, then she appeared and I relayed the news which resulted in a very loud, happy squeal. I think we are all very relieved.

Nothing particularly exciting has happened for me today, but I am very content.