Well! Hello there! It has been a while, hasn’t it? It’s been a particularly challenging cycle and it has sadly kept me from doing what I love most – writing.
What a cycle it has been. We definitely struggled through the first week of it. Coming into a cycle having had my stent changed was difficult. It caused some extra pain and we were finding ourselves calling out for morphine jabs a lot.
Fortunately, thanks to a brilliant District nurse called Jo (I don’t know if you read this, but if you do, a huge thank you Jo) we managed by the end of the cycle how to effectively use the sublingual fentanyl tablets, reducing our needs for call outs massively.
Things got really rough and on the Friday of the first week, I was again asked if I wanted to be admitted to the hospice to see if they could get on top of things. I took the weekend to decide and things seemed to settle massively over that period so decided not to on this occasion. Being admitted would only cause a lot of aggravation at home with Tom trying to visit, seeing the girls and not upsetting my eldest who struggles with me even visiting the GP at the moment. It would have had to have really been in my best interest and in that particular moment where things are so up and down and changeable it really didn’t seem to be the best time.
I cannot lie, though, the thought of being admitted to a hospice did freak me out a bit. Mind you, if it had been a suggested stay on the oncology ward at the hospital I think I’d have felt the same. A bit like the cancer was in some weird way owning me and having control over me. That’s something I really can’t allow to happen mentally. That’s my way of fighting it, by not accepting it and by giving it credence enough to put me in a medical institution because I couldn’t cope with it? That’s a bit like accepting it in my head.
There has been a plan made about my syringe driver, that it will stay, potentially until the end of radiotherapy so I will be on it a long while, making reductions if I naturally show signs of needing it reducing. But ultimately removing the pump will probably be the time I go for that weeks stay into the hospice, to save me enduring too many withdrawal symptoms and to make sure we adequately move over to another pain medication if needed. It can be done much more successfully and faster under the constant watchful eyes of the doctors and nurses there and I feel like that is worth the separation from the family. That is something I will need help with and I cannot escape it.
Things seemed like they were picking up at last, which was great! By the end of the second week I felt well enough to take a trip to town with my parents, we even managed lunch in a cafe in town – hurrah! I went shopping and felt NORMAL for the first time in a while – I mean not completely well, but just doing something like going to the shops after weeks of basically either being at home or at the hospital was really, really satisfying.
But sadly it wasn’t to last. That evening I was blue lighted by ambulance into A&E with a raised temperature of 38.5 (for chemo patients in my trust the cut off for investigation is 37.5). We had the initial thought it was the driver site in my tummy that was sore, red and a little raised that we had changed that morning as we thought it might be on the cusp otherwise.
Sadly, what with it being a Friday night it was crazy busy. We had arrived by around 11 pm roughly and I wasn’t seen in my room by anyone for over an hour and when I was it was awful, I was treated appallingly by the member of staff that came in to do an ECG. The treatment was bad enough to warrant a written complaint on my behalf.
We then didn’t see a doctor until around 4 am, who was lovely and agreed with us, it was probably a skin infection we’d caught early as the bloods they did showed raised infection markers but not massively so. She prescribed me a quick course of IV antibiotics and the rest to be done at home orally. I slept from when we got home for most of the day, waking mostly for food or meds and then going back to sleep again. I spent two days in bed, my fever refusing to break. We kept a close eye on it, but it ended up taking until the Thursday before my next chemo to break below the 37.5 mark. In the end, with nothing coming back from any of the tests, we had to conclude I’d caught some sort of virus off the kids from nursery or something.
Typical. That’s two good weeks I’d lost to either having my stent done or having a virus. Fingers crossed next cycle will be better for good weeks!