I finally got two units of blood yesterday and felt fantastic before I went to bed last night but I’ve felt quite tired still today but am now feeling somewhat perkier – not just quite perky, perky, PERKY yet.
I had a surprise blood clinic appointment on Friday. I’d phoned up for one earlier in the week and it was booked for next Friday but we got a phone call on Thursday afternoon changing it to Friday just gone.
The appointment was 11.20 so we got there at about 12.10. Wait, there is a reason for this over and above just tardiness. Most people need a blood test before their appointment and this takes at least an hour to process so if you don’t need one you add an hour to your appointment time – or you end up at reception having a conversation about why you’ve had to wait an additional hour on top of any running late time – with me over hearing it. As it was we waited about three minutes. We’d barely had time to say ‘Hi’ to Sean before we were escorted in by the Prof to meet a new doctor who would then consult back with the Prof if he needed to. I seemed to have more questions than usual so when he got up to ask about the next step in treatment B suggested that he just ask the Prof to come back in whereas I’d have happily let him run to and fro!
The upshot was –
I get to have another dose of DT-PACE in about two weeks when my blood counts have recovered.
I mentioned that I’d had some side effects this time from the dexamethasone. The new doc obviously wasn’t familiar with my ‘JUST SAY NO’ approach to steroids and again I don’t think appreciated just how bad things had been in the past. I felt the need to say that if I’d been sat there two weeks ago and been told about having DT-PACE again I’d have probably been in tears. Prof when he came in said that they’d done their job but they didn’t want them to do any harm and the dose would be reviewed again.
I got two units of blood on Saturday as Prof said in view of my haemoglobin count I could do with some. I have to say I was a bit put out because there’s a note on my renal file to say that my haemoglobin should be kept above 8.0 and it had dropped to 7.9 presumably on a day I didn’t ask about the results (maybe I was too tired) and I didn’t get any the next time I went. So I could have been feeling better sooner. I phoned renal while waiting for my meds in the pharmacy and was told that would be okay but when I got there on Saturday morning I had to go through it again and at one point it was tabled that we could see what my result was before getting it ordered. I must have used the word ‘Prof’ as every other word in an attempt to by-pass this and just get the blood which was just as well as it turned out to be 8.8 so there was no way I would have got any. I then had to say this again later. As it was the lab had to do the cross match manually so in order to get both units dialysis had to be extended by 40 minutes. The sister on the dialysis unit on Saturday also said I’d be in an isolation room this coming week as my neutrophils were below 2.0. Now I had thought it was if they were below 1.0 as although technically neutropenia starts below 2.0 it’s only classed as mild risk of infection at that point, moderate starting below 1.0 and severe starts at 0.5. So I should have been in isolation for the past week. My neutrophils on Saturday were 0.9 so they had dropped a little bit further but my platelets had gone up to 238 which is well above the normal lower range of 150.
I got questioned about temps, shivers, chills in light of my neutrophils and white blood counts but was able to say that apart from the slight bleep last Sunday there hadn’t been anything. Except I forget that I’d get a ‘bite’ on my right boob – minds out of the gutter people – it’s like an insect bite. How did I forget? Well it hasn’t bothered me apart from Wednesday night when I first noticed it when it was a bit itchy or when I have a shower and notice it again – which was how I remembered on Friday tea time that I’d forgotten it. I’ve been keeping an eye on it since and it seems to have settled down but I won’t hesitate to flash it at somebody (preferably in the medical profession) if it turns iffy.
After all we learned about peritoneal dialysis I don’t get to put it into practice – at the moment – due to the increased risk of infection during chemotherapy. I was a soupcon disappointed to say the least but obviously could see the sense and the issue of the time I spend away from home on dialysis days has been resolved somewhat this afternoon when our next door neighbours (who have given me a lift to and/or from the Royal previously) said they were happy to collect me on Tuesdays and Thursdays if B dropped me off. When I asked if she was sure, she said apparently they consider I’m way better off getting home, having a cup of tea and settling down for the afternoon than hanging about waiting. B has been picking me up on a Saturday anyway but will now drop me off instead.
Oh and I had broached the subject with B last night of driving myself in on Tuesday (since I felt good and was anticipating feeling even better by then) as I really wanted to go to Armchair Yoga on Tuesday afternoon. Initially or that should probably be straight away practically before I’d finished speaking B said ‘NO’ but then when he’d had a little think about it and I’d said that I wouldn’t do it if I didn’t feel up to it he said ‘Well, okay, as I’ve not yet had the bumps and scraps fixed yet it won’t matter if you do another one.’ So B probably had to fight the urge to run round the garden wall and hug our neighbour in relief.
I’ll be referred to the Transplant Team in relation to a donor stem cell transplant.
And other than getting a prescription for things I was running out of that was basically it. It was good to note that the pharmacy still think a four week s`upply of paracetamol and Tramadol is 32 and 30 respectively. I have no idea why this is but everything else I got four weeks worth of but as before these two only get issued in one box lots. We did however get a free carrier bag as requested by B as I’d walked out of the house with my knitting and myeloma notebook and pencil in my arms without putting them in anything. He has pointed out that my memory isn’t what it used to be – I blame the medication which is appropriate because I’d forgotten to take it all on Thursday night!
I was lying in bed wondering why my back was so cranky and started working out how long it was since I’d taken the night time painkillers when I realised that I didn’t think I had. I definitely didn’t remember taking the Thalidomide which are kinda doubly locked in so have to burst through foil and cardboard. I did remember that it was a new box that night so it would be easy to confirm so I got out of bed, went down to the kitchen, lifted out the box of meds, took out the Thalidomide box and… no, I hadn’t taken them. As I didn’t want to overdose on paracetamol I only took a Tramadol just in case but what I think happened was this – I went into the kitchen and popped four Calcichew into my mouth which, as the name suggests, need chewing, whilst chewing I thought I might as well take my temperature and then remembered something I needed to ask about in clinic and went through to the dining room where I’d left my notebook handy in case of such occurrences and wrote it down. I then went back into the kitchen, put the thermometer back in the box, put the box back in the cupboard and made a cup of chamomile tea. If I’m distracted from something there’s a huge chance I’ll forget what I was distracted from.
And then we went and had fish, chips and mushy peas at the nearby Sotos and bought a pan so lovely it deserves a post of it’s own.