Morning all. I am sending this from a very comfortable bedroom at my heaven sent friend’s house. She is an absolute gem of a woman, we have been friends for years. Although she is quite a bit older than me, we have always been on the same wavelength and talk a few times a week. The house is so calming and peaceful, very elegant and yet incredibly welcoming and homely. I’m glad to be here. Kerr is in a bed next to me - we had a twin or double option, and given my current needs we thought twin beds right next to each other were the ideal solution. We also have an en suite, honestly we are so blessed. I don’t want to out my friend by name without her permission if you don’t mind, but safe to say she is a wonder. She made the most delicious chicken soup for me last night which is exactly what I can eat just now. It’s very difficult to eat actual meals with lots of chewing and effort and resultant painful bloat and lack of capacity. So we try little and often.
As for my health, well I can’t lie, I feel like total shit. Less of the terrible night time ‘please just kill me’ pain, which is good, but I’m just SO SWOLLEN from boobs (oh they have fully disappeared) down. 5 years pregnant and carrying on both front and back, bum has gone, but odema on hips awful. Legs so painfully swollen - raising then and doing massage, can only walk a few steps but trying to push myself a bit. Have to walk upstairs here and it takes forever and leaves me breathless and exhausted, but I think it’s good for mento keep doing that.
Chemo affects starting to hit - too exhausted to hold a conversation a lot (writing here actually easier). Shaky and weak all the time. No hair fall yet, but desperately need to wash my hair, dry shampoo can only go so far and I feel disgusting. On bed baths because of the bag and general exhaustion (thanks Kerr). Brain feels a bit fried and I’m not sharp and switched on as much, I’m making lists so I don’t forget things. Still jaundiced which is totally freaking me out and no doubt adding to all the physical feelings, trying not to have too high expectations from one chemo, but keep waiting for a sign (less yellow) that things are going in my favour. Feeling emotionally very up and down, I can go from positive ‘yeah, let’s kick cancer’s ass, to ‘how can endure another day of this torture’ in an hour or less. It’s not so much good and bad days as good and bad hours. We take the good when it comes, which is more consistent when my pain is manageable,
The lining of my mouth seems to have sort of peeled in the last couple of days which is making things again a bit tricky. Not sure if it’s chemo mouth or oral thrush from all the endless antibiotics.
So, yesterday we left the hospital at around 3.30pm with a host of medicine to last 2 weeks. We have had to temporarily register with a GP near my friend in order to get repeats of things I’m going to run out of. That’s been surprisingly tricky and they haven’t been the most helpful, but I think we have got there.
Kerr is still sleeping beside me, bless him he is exhausted. I don't want to wake I need him to get my morning meds in though and I’m kind of stuck in this position until he helps me up. I need especially the MST which is slow release morphine. I try to keep the timing a really accurate for that am and pm so as to have no possible breakthroughs. I have the rest with breakfast as some are hard on the stomach. I find that the 20mg MST twice a day with a top up of 5ml liquid oramorph and 2 paracetamol just before bed does seem to help a lot pain wise. Don’t get me wrong, it’s not a cure all, but it allows some sleep. 2 x laxido or equivalent sachets seems to keep things moving reasonably. I have so many other pills to take that it’s quite scary. But, strange times call for these strange measures and I’m doing what I’m told - which is not like me at all, but none of this shit is like me.
Wheelchair being delivered today at some point - was easy to order one online, took it for 2 weeks for now. Grateful for a solution to get outside.
Thanks again for your pics, animals, flowers, beautiful children - especially your beautiful smiling survivor of cancer, so precious. For your prayers, compline, thoughts, landscapes. Basically for just being here and reading my meandering thoughts. Your good wishes for Kerr, Jacob and my mum. Jacob and my mum are always in contact, always willing me on, FaceTiming.
So, let’s see what today brings. ❤️