Tag Archives: clinic appointments

Deja Vu DT-PACE

Yesterday we went to our clinic appointment to find out how things were going. We bumped into Sean in the waiting area, which is always nice, along with a couple of ladies who also have myeloma. As it turned out the results of the bone marrow biopsy weren’t back but other results were and a plan for the next step had been formulated.

My blood counts are measured once a week at the moment. The blood is taken while I’m having dialysis and this means I don’t need to be stuck with a needle – which is always a plus. So my blood results from Tuesday (24 January) were –
haemoglobin – 8.3 (normal range 11.8 – 14.8 for women) This would explain why, although I’m feeling better, I don’t feel completely like the energiser bunny. In renal they don’t routinely give blood to increase haemoglobin, they use ARANESP which promotes an increase in the production of red blood cells. It takes longer to have an effect than a transfusion but apparently if you’re on the kidney transplant list the use of blood can cause issues with antibodies. The doc said that haemoglobin is usually the last count to get back to normal. Today it had gone up to 8.6.

WBC – 4.3 (normal range 3.5 – 11.0)

Platelets- 451 (normal range 150 – 400) B was bothered by this and, despite me having told him that the normal range went up to 400, kept asking me to check and even when I did double check with a print off of blood results straight from the hospital he still asked the doctor yesterday – mind you the doctor said 350 so B probably won’t believe me in future anyway – he’d already asked whether I’d written the number down wrong. Fortunately I was able to point out that a nurse wrote the figures down for me. It turns out that the increase is likely due to dialysis and is nothing to worry about.

Although the results of the bone marrow trephine were not back, the aspirate sample not being measurable (which has happened before), the paraprotein result as at 19 January was *drum roll please* – ‘no detectable paraprotein found’. My IGA level (the type of myeloma I have) was previously 24.09 and at the 19th was 0.37 which is actually slightly below the normal range of 0.8 – 2.8.  And I’ll be tissue typed with regard to a donor transplant.

So I get to have another course of DT-PACE possibly starting this week. My name will go on the board and when a bed is available I’ll get a call. This week!! If I’ve not heard anything by Wednesday or Thursday I need to give them a ring. This week!!! Now despite having spent nearly 10 weeks vacationing away from home last year this is only the second time I’ve had prior notice of going into hospital – the first time being my stem cell transplant in 2010. This of course has produced a…

To Do List

Ring ASDA re the claim for Buddy’s allergy treatment – which they have declined as they didn’t receive some information from the vet along with declining a second one sent which was below the excess. Now I thought because it all related to allergy treatment they would have just tagged it on and as the total bills are around £1,000 it really needs sorting

Download films/games to netbook

Buy pyjamas – because they always come in handy?!?!? Although B wouldn’t even contemplate a trip to Primark yesterday

Buy sponge

Connect the xbox to the internet – essential of course

Buy small fridge – the lady in the next bed in June had a little fridge which I have to admit at the time I thought was more hassle just bringing it than it was worth in, but realised in November/December that they are actually really handy to completely avoid warm yoghurts and milk going off

Buy some soft bras along the lines of the ‘ahh bra’ I saw advertised – because it’s so uncomfy to sleep in a regular bra BUT and that’s a big BUT there’s always the issue of being attached to stuff which makes it impossible to change in and out of bras (or tops) as easily as usual. Plus when you get plucked from your bed for dialysis in the early hours without warning it would avoid having to sit with a blanket clutched around your bosom (or barms as I learnt they could be called yesterday) because you were half asleep when collected and neglected to register that the short sleeve pale jim jam top was wholly unsuitable for public consumption

Buy badger lip balm – my lips went all peely last time. They have some lovely interesting flavours – pink grapefruit, lavender and mint – but I went for unscented in case some of the interesting loveliness made me puke.

Buy shower gel

Buy material – despite going to the fabric shop, Abakhan, yesterday (we didn’t walk, we parked closer) nothing jumped out and said ‘Use me to back your Christmas embroideries’. What do you mean ‘This could wait’?

Send three emails I’m behind with

Make soup – I’m not really a big fan of tinned soup and considering how my mouth went last time I started thinking that homemade soup would be a good idea. B could then heat it up and bring it in – when I floated this past him last night he didn’t think it was as good idea as I thought and as I discussed it with him I realised that when my mouth was sore I didn’t really eat much of anything so I’m not too sure how good an idea it was not even considering that when Auntie Ann and B brought soup in I returned it

Make pasta sauce – see above

Order B’s facewash

Make a decision and order Auntie Ann and Uncle Ray’s Christmas present – one of the last I need to sort out

Send one of the Christmas presents I have got

Pay credit card bill

Buy new laptop – Currys have admitted ours can’t be located so are giving us enough to buy a similar spec one. Of all the things on my list B was so taken with this one he planned to go this morning but then remembered that I had dialysis and Auntie Ann is visiting this afternoon so he’ll either be pushing her out of the door or I have a feeling we’ll be going tomorrow

Sort out a knitting pattern – I quite fancy something wearable for me, but it would need to be uncomplicated due to potential lack of concentration so nothing multicoloured as the four colours on a row were too much last time

Buy wool for knitting pattern

Take before and after photos – When I said this to B yesterday he looked at me quizzically ‘Not of me.’ I said ‘Of the dining table’ because by the time I get home it’s usually hard to tell what colour it is for the piles of post and other miscellaneous detritus

Check dates new series are starting on Sky and add to planner – ohhh, two start when I’m potentially away so I’ll need to remember to remind B (if we get a laptop I’ve told him I can email him requests) but with the new HD box which has a gazillion hours of storage he won’t be asking me this time what can be deleted. BUT if I got him to run an extension down to the lounge so that we could hook the Sky box to the phone line (don’t tell Sky as permenant connection to a phone line is part of the contractual requirements) I could set recordings from my bed. I think we’ve got everything he’d need – drill – check, bit long enough to fit through cavity wall – check, extension cable – check, enthusiasm – ch… well, what do you reckon? And I think I forgot to mention that when I order the new box we also go £100 of Marks and Spencer’s vouchers which more than covered the cost of the box. We very rarely shop there mind but that’s not the point when they’re free

Take library books back – I’ve only had them since September. Don’t worry I’ve renewed them so it’s not as if I’ll need a bank loan to pay the fines

Get new book to read – if they’ll let me have anymore

And… no wait, I think that’s actually it. No it’s not I now have a new one. I made a pram/cot blanket for one of the health care assistants last week and one of the nurses asked about one today. After initially declining I thought, well it’s easy and would give me something to do before going in to stop me adding to the ‘To Do List’ and she’s happy to wash it herself if I finish it whilst I’m in. Never one to miss an opportunity to show off my handiwork here it is…

Double knitting yarn on 4.5mm hook using daisy pattern it measured 75 cm x 94 cm.

Now I have actually done two and a half of them already. There’s nothing like a bit of pressure to make one get one’s finger out but how did I manage a half? Well I rang ASDA about the information they needed from the vet but neglected to ask them about the second claim. Doh!

The Twilight Clinic

We went to a clinic appointment on Friday and here’s how it went – I know shame on me for only posting now on the Monday (well hopefully) but we’ve been having some internet connection problems. So much so B has had to disconnect the router twice (once he had established which was the router and which was the shredder) – not that big a deal you’re thinking but B’s usual IT involvement is ‘Paula it says blah, blah blah’ where blah, blah, blah is the whole message on the screen verbatim with no preamble like ‘I have a problem with the computer’ and where I am usually in either the bath or bed, half asleep in either case, and when I ask him to repeat it he says ‘It’s alright I pressed OK.’ So I arrived at the clinic, following a trip to phlebotomy since I’m minus my PICC line, to find about four other patients, two of whom were at the counter waiting for blood forms on their way out. B arrived shortly after (he drops me off and then parks the car) and being equally amazed at the lack of people said to one of the health care assistants ‘Where is everybody? Have you killed them off?’ which earned him a dig in the ribs off me and fortunately a smirk from the chap closest to us who was having a sit down while the printer was sorted. After getting wey-hayed, we went off for a coffee and got back to find no-one else other than staff in the clinic! I gave the little buzzer thing we’d been given to alert us to our turn a sharp look thinking it wasn’t working but it flashed back at me in a smug ‘I’m fine’ way and we sat down in anticipation of at least a solitary doc not having gone to lunch. One of the doctors I’d seen on the ward and once before at clinic stopped as he was passing and enquired how I’d been and then the Prof appeared to call us in. Now I feel at this point I need to refer us all back to the clinic appointment two months ago when I had seen the Prof last because after we entered the room I felt like I’d entered the Twilight Zone. Fortunately I’m not a fretter and generally go with the flow so hadn’t spent too much time dwelling on the prospect of a donor transplant – other than thinking after just a week in the Royal that I’d really, really miss Bud. Long story short (what do you mean too late for that?) I could still opt for a donor transplant if I wanted but with Velcade and Revlimid there are other options. With having no siblings to even check for a match there is a 5% to 10% mortality risk just from the transplant itself and it was a lot to put someone through. We heard the letter that was dictated to our GP (of which we will get a copy) and in this and also later the Prof described me as ‘well informed’. I so nearly said ‘Are you saying I’m a smart arse?’ and then thought better as I don’t really know him well enough. When I told my Auntie Ann this on Saturday she said ‘Mmmm, but you are.’ So it’s my choice of donor transplant or leave well enough alone for the time being (pending the subsequent discussion on cytogencis). You may have noticed that I’ve been using ‘I’ a lot, rather than my usual ‘we’ and this is because B has basically said that it is my decision. The Prof mirrored this and before I could ask Roo’s question ‘What would you do in my position?’ he beat me too it and said ‘but if it was my relative I would go for…’ donor transplant I assumed ‘Velcade/Revlimid as needed later.’ – do do do do, do do do do (that’s supposed to be the Twilight Zone tune) – which I felt was so different from the last time I saw him. Maybe it’s the IMF conference he’s been to in the interim that’s made a difference or my lack of brothers or sisters – you know I always wanted one when I was little not realising how handy they could be medically as well as for taking the blame. Prof did point out, and don’t we all know this is true, that if you asked ten myeloma specialists for their opinions they wouldn’t all agree. I asked about my liver function as the results on my discharge form were a bit out of whack but this typical following treatment and they’ll be tested next time. We go back in six weeks (despite the non usual receptionist trying to give me an appoint for six months – wouldn’t that be nice) and in the meantime, well next Tuesday to be exact, I get to have another bone marrow biopsy on which cytogenics will be run. The result of these will have an impact on the next course of action or even inaction. We’re ideally looking for a nonexistent plasma cell content and perfect chromosomes – I mean it’s not much to ask is it? I’ll even settle for that over a reliable internet connection and a pleasant mother in law!