Okay not so much now but Wednesday and Thursday if I sat down without thinking about it and pressed up against a cushion in the wrong manner it made B jump. Not so much the sound of me actually hitting the cushion more the yelp I emitted. How come I had a sore rear end? Well…
Last Friday we went to the Blood Clinic and saw the Prof. My blood counts, neutrophils, white blood count and platelets were all well in the normal range with only my haemoglobin slighty low – which doesn’t seem to be unusual for me – plus the counts had been staying there on their own. I haven’t had a donation of a kindly stranger’s blood since 23 December. This and the fact that my ‘quality of life’ was so much better than eight to ten weeks ago gave the Prof the indication that all was going well however the only way to really see how effective the DT-PACE treatment has been is a bone marrow biopsy since my paraprotein reading is not a reliable marker on its own. He asked me how I felt about this as I was as fully involved in the decision making for my care, I said that I’d thought as much and indeed this was what I’d told people when they’d asked how we would know how things were going.
The mention of quality of life always makes me nervous. I’m not too sure why exactly maybe because one day I’ll have to say it isn’t good and will I admit to it at that time. After having been in a lot of pain with my collapsed vertebra I would say that my quality of life at that time was pretty low. For a while I couldn’t even get in a comfortable position to knit, well or sit, stand, lie down and laughing, coughing, sneezing resulted in me nearly, or occasionally actually, ending up on the floor.
When my back eased off, before it got worse, I’d said to a friend that I didn’t know how people coped with bad pain all the time. She said that they probably got used to it but I don’t think so. I truly thought that the pain I had before I was diagnosed was never going to go away and that was a horrible thought. So I think for me how I will potentially feel tomorrow is a measure of quality of life – that even if I feel particularly tired or throw up a lot one day it doesn’t mean that tomorrow or the day after will be the same. Let’s be honest no-one has a wonderful day every single day, even if its only due to a self induced hangover after an over indulgent weekend. Quality of life is the culmination of all days – and maybe letting the bad ones slide and making the most of the good ones.
Anyhoo, Tuesday, after dialysis, I went up to the Blood Day Unit for a bone marrow biopsy. The actually aspirate and trephine samples, done by the same lovely registrar as last time, were fine – okay it did hurt a bit but it’s not like it lasts for long and I only had to pause briefly mid sentence twice – and the subsequent lie down was uneventful. When the requisite ‘lie down’ time was up one of the nurses checked the dressing, which was wasn’t showing even a hint of blood, and I got up off the bed. I popped on my shoes and was stood chatting to the nurse when I thought ‘My bum cheek’s gone warm.’ I looked down and there was blood spotting onto my shoe and the floor. The nurse whizzed off for some gauze and I sat down on the bed, she popped the gauze over the dressing and I got to have another lie down. Fortunately I had dark brown linen trousers on and a long winter coat so the blood wasn’t easily evident – we discussed how stylish I would have looked having to venture home in a hospital gown with my stripy pink socks and flat tan shoes sticking out the bottom. The nurse also did an excellent job of removing the blood spots from my shoe.
The additional lie down meant that I was late for my ambulance ride home. B rang while I was lying there and said he would come and pick me up if it was there problem. When I rang the ambulance reception they said I could still have a lift home but, since I’d missed my allocated ride, it would depend on when a suitable crew got back and most of them arrived about five o’clock – it was currently ten to two. Needless to say B picked me up.
During the course of the bone marrow biopsy the junior doctor assisting asked me whether I did anything else other than knitting and crochet. The registrar answered ‘She’s not got time for anything else she’s a professional patient.’ On Thursday I had cause to think that if I got paid for my time at the hospital I’d probably have the best paying job I’d ever had. I was all ready to be collected at ten past six (in the morning) with B standing watch at the porch window and getting more and more antsy as time went on. At seven I phoned up to see where they where. The co-ordinator didn’t know but said she’d ring me back. B was having to call into work that morning so said he would take me and then go straight in. I rang back to tell them this and she said that was fine, they had sent a taxi but it would be quicker if B brought me, they’d let renal know I was on my way. I thought the mix up may have happened because I didn’t get a lift home on the Tuesday however, it turned out that the two guys on the ambulance ride home hadn’t been collected that morning either and it was only after they’d both phoned that they’d been collected by taxi. We then waited ages for our lift home. So after being ready with my coat on at 6.10 am I got back home at 3.20 pm. Mind you it’s giving me lots of time to be crafty. Here’s what I did yesterday…
I used some of the left over yarn from Bright Star and the pattern is a free one – Garter Yoke Baby Cardi. I didn’t finish the cardigan yesterday as Auntie Ann and Uncle Ray visited as I got home and then I had to fit in a 3 to 4 hour nap and then tea – which I actually made myself with only a minimal amount of assistance, and that was just so B didn’t think he was leaving it all to me – and then more sleep. That’s only the second hot meal I’ve made since I’ve been home, B has taken over as chief cook.
So, here’s the finished cardy…
That is a sweet little cardy… someone is going to be very lucky to have it! Your report for the week should earn you a bonus in your pro-patient paycheck… I will put in a request right now… but to whom does it go?
Professional patient……boy, do I like that terminology! And, I love the little cardy. Wish I had your talent.
Now there’s a thought – charge them for the time they keep you waiting! £20 an hour or so? Or you could charge them a “consultancy fee” – even more! Oh at least £200 an hour!
Quality of life – there’s no right answer is there? FL gets that question every time – “How’s your quality of life?” And what is he supposed to say? “Effing miserable because my wife insists I eat broccolli”? 😉
Im not sure how many people are treated by DT-PACE….. I only know of one, and it certainly did the trick for her. Hope it does it for you too. From all the K and S ing it seems to!
B in the C D