May Contain Nuts

This should’ve been a blog all about the immunotherapy yesterday but unfortunately, due to problems between the chemo unit and the oncology department, I was turned away from the hospital as there was no prescription for me. The pharmacy said my oncology doctor hadn’t filled in the paperwork so there was no funding for my prescription, my oncology department said the paperwork is there as I had a break in treatment for my surgery and radiotherapy. They assure me that treatment will go ahead on Friday, and I should make sure I get the chemo unit to check on Thursday that everything is definitely in place for me.

I didn’t mind the disruption yesterday, they assured me that my appointment for Friday afternoon will definitely go ahead if the prescription is there. So in my head I’ve been thinking only three more infusions to go, with three weeks between them. I was wrong. I got my hopes up and had them come crashing down again.

My oncology appointment went okay. It wasn’t with Dr Algurafi. He said his name, but it wasn’t one I recognised, and then my brain forgot it a few seconds later. He asked about radiotherapy. I said I think I have coped well seeing as it is only three weeks ago. My breast has shrunk in size (as to be expected) and I don’t get much pain from it. I try and remember to put creams on daily. The skin on my nipple started peeling off last week, but not in a weird weepy way, just a general dead skin removal with new skin underneath. I have felt tired, but not too exhausted. He asked me how I got on with the chemotherapy previously, I said that I struggled with the sickness but I eventually learned how to cope with it and I took the tablets and had control of my bowel movements. He said immunotherapy is not like chemotherapy so it doesn’t leave me vulnerable, and I am being booked in for six rounds of it, every six weeks. My heart sank. Treatment finishes in November – he said. I nearly cried. I’ve already had eight – I said – I thought there were just a couple left. It seems I was wrong. Six more to go.

I asked for a fit note. Leave it for a few weeks and see how you feel – he said to me. But I know how long it takes them to get letters sent out so I asked him if they could get it started now. He said that he thinks the letter should come from my GP and I should contact them about it. And that was it. Meeting done.

After a quick call to the GP’s receptionist (who agreed with me that it should come from oncology and not the GP), I filled in a request for a fit note and emailed it to the surgery.

Back when I had my first meeting with Dr Algurafi, he said that my treatment would take a year. I came to terms with the fact that 12 months of my life would be given up to hospital visits and appointments and treatment. November is not a year. It’s 16 months. I want my sleep back. I want to have a shower without having to wear a cover on my arm. I want the picc line gone and I want a normal arm again. I will speak with the nurses in the chemo unit and find out if my veins look like they will cope with cannula’s again. If they say they will, then I’m requesting a picc line removal as soon as humanly possible.

I thought I would be excited after my oncology meeting. I’m left feeling extremely melancholy. I have had plans change on me, appointments move, blood results that are too low, machines that do not work, but the timeline has always stayed the same. Today, it changed. I need time to process and adjust, just like I did at the beginning, and to accept the fact that I will not be out of active treatment this year.

https://www.cancerresearchuk.org/about-cancer/treatment/drugs/pembrolizumab