As in ‘Arry Potter since I’m residing in a cupboard albeit not a cupboard under the stairs (I cannot take the credit for that comment it was one of the sisters that made the comparison). Maybe Harry Plopper would be more appropriate – a lá Homer Simpson’s pig in The Simpsons Movie.
I do have two doors but no windows.
And there’s my buzzer in there too – because I just knew you’d want to see it and well, I er, pointed my phone the wrong way to take the pic!
So what exactly have I been up to since I got admitted – let’s see…
I got to go out last Tuesday afternoon into Liverpool nearly shopping – only nearly because I got to the till in Primark with a pair of trousers, a cardy and about 350 pairs of knickers to find I was totally unable to remember the pin number for my credit card and even though Primark is a cheap shop the £2.00 and coppers I had in my pocket wouldn’t cover the cost of the items.
With B taking me out for tea as well I was shattered on Wednesday, my shoulder pain was also quite severe which didn’t help and when Auntie Ann suggested going home earlier than usual so I could get some sleep I didn’t exactly protest. The day nurse had asked if I wanted additional painkillers on top of the paracetamol and Tramadol and I’d said that just at night would be good – the pain had stopped me nodding off on Tuesday night and then woke me up a few times. Later in the afternoon I asked for some more but the junior doc said that with my kidney issues I could only have it the once. It certainly helped that night and if the pain had persisted I would have asked for something else on Thursday but it eased considerably and has now gone completely. An x-ray showed no myeloma damage but a ‘touch of arthritis’.
I got to go out for a wander on Tuesday as the DT-PACE treatment didn’t actually start until Thursday due to my peritoneal dialysis (PD). It raised a number of questions – not least would I be able to do it at all through the treatment. As it turned out I can and because I now have some kidney function the renal doc was confident that for the length of the treatment I could manage with 12 hours of PD per 48 hours. It has resulted in me having to get up at two, three and five in the morning to pop the PD fluid back in. It was supposed to be midnight but with the initial lot of drugs being a bit late arriving and the bags running slightly longer than 24 hours it got later.
The renal doc’s only concern was about doing the PD at midnight (and the blood registrar did ask if I’d need help from with it) and was a bit amazed at me doing at 3 am ish (ish because I slept through my alarm and the nurse had to wake me up) – but basically I much prefer this to going down to another ward for hemodialysis – plus it results in statements such as ‘I don’t think that was my wee this morning’.
I have to wee in a cowboy hat and note what I drink – technically referred to as a ‘fluid balance’ and this morning one of the health care assistants was concerned about the look of one of ‘my’ wees. My hat’s are numbered, in biro, 9 – my room number. This errant sample had what looked like a 9 on it and there is no other combination of beds within the whole ward that would result in a 9 other than my room. Fortunately she had the wherewithal to check with me and we waited for my next one which was fine otherwise I could have had all sorts of things poked and prodded unnecessarily since it then looked like someone had incorrectly marked their deposit. When you’ve done it at a time with a five in the hour slot and am somewhere after it I for one find it difficult to say I definitely had a wee never mind recall exactly what it looked like.
The big problem with the PD was that the fluid sitting working busily in the peritoneal cavity clearing out the toxins would have attracted quantities of the chemotherapy drugs which would have had a two-fold effect. Firstly reducing the amount that circulated in my system going about it’s proper business and secondly potentially causing problems in that area – too much heavy partying going on and not enough working.
So the schedule before delays affected exact timings should have been –
Thursday 12 noon – drain PD fluid, start 24 hours chemotherapy
Friday 12 noon – chemotherapy disconnected
Friday 12 midnight – start night time PD
Saturday morning – change PD fluid
Saturday 12 noon – drain PD fluid, start 24 hours chemotherapy and so on.
The x-ray of the bump on my head showed no myeloma lesion so I got to have a biopsy. I have to say I wouldn’t have been at the front of the queue to have a needle stuck in the back of my head but it was actually okay. As there wasn’t enough material on the first go I got to do it twice. It was just like being stuck with a needle for a blood sample but the ‘stuck’ sensation carries on and wiggles about a bit. The lady who did it, who was a lace knitter and loves Ravelry, had a look in the microscope right outside the ward and said that nothing looked untoward but they would analysis it further. I said I’d actually been thinking I may have always had a lumpy head but not noticed but it has gone down a lot today – Auntie Ann is leaning towards me having bumped it.
As it turns out that we have a match for a donor stem cell transplant I get to have an MRI of my head and shoulder to ensure there are no myeloma related surprises during the transplant. The registrar mentioned this last week, not the match but the transplant – I didn’t ask about a match because I was concentrating too much on the thought of someone sticking a needle in my head but B and I saw one of the transplant docs on Monday and there are two ‘matches’ with exactly the same mis-match at CW something or other on the light bit of the relevant antibody – if I remember correctly. It’s not a major one and another doc said that a minor mis-match isn’t necessarily a bad thing as it can help participate in the whole graft vs host and subsequent graft vs myeloma effect. Something I did learn during the course of the conversation with the transplant doc is that it can be quite distracting to have a few grains of rice sitting on top of the end of your PD cannula which is itself tucked into your bra! I was just tucking into the sweet and sour chicken and rice that B had brought me when he arrived and said I’d rather speak to him then than wait however I didn’t feel that rummaging down my bra to extract the offending food would have been appropriate. The transplant could be in five to six weeks.
So back to my cupboard. I was initially in a six bed room. One of my fellow holidaymakers got swabbed positive for flu – a flu not already in the whole hospital so brought in by her or her visitors. She got shipped off to a side room and the bed was blocked. The five of us remaining got flue inhalers to take. Another vacationer went home on Saturday and that bed was blocked too and the same on Sunday. A frequent tripper here (who’s been partaking of the facilities every time I’ve been in since November) went home for a few hours on Saturday and had to come back to get swabbed as she’d had a bit of a cough. The results on Monday showed a positive for another type of flu so she got a trip to an isolation room on the infectious diseases ward. Vacationer four had already left to go home on Monday so that left me on my own in a six bed room and because I was potentially contaminated that meant all the other beds were blocked so I got moved to the only cupboard, I mean room available. It’s okay actually although I didn’t sleep too well the first night – I think it was too quiet!
Anyway it could be worse I could be on my hols in Torquay, like a friend, and be in isolation in my hotel room. Chris phoned me earlier to ask if I was still in segregated and then informed me that they were too. Her husband hadn’t felt too good this morning with an upset tummy and she’d mentioned this to the waiter at breakfast. As she was getting ready to go out and leave hubby to mop his own fevered brow the hotel manager turned up, wearing a mask, and asked if she’d not go out or mingle with other guests in the hotel. They’d had a few reports of upsets – they had checked the kitchens and any similarity in the food consumed and had found nothing that linked the cases in that respect but were being careful so she’s spent the day in the hotel room with hot and cold running room service.
The manager before he left said that room service would of course be complementary and she (hubby wasn’t up to getting out of bed let alone eating) could order anything she wanted but it would be really handy if she could order something thin they could just push under the door like pizza!
Wow – missus! A transplant? Things are moving fast! Better stock up on yarn to keep you going through the adventure!