If I can find the receipt can I return my myeloma – I’ll even take store credit

Firstly the good news, my liver’s fine.  There were no indications of any infection.

I have a new cannula.  I may have mentioned I loved the old one but three days is the limit.  There used to be some leeway if everything looked okay but the new (presumably cheaper) cannuals aren’t really able to physically stand more.  As testified by the ‘I told you so’ look on the nurse’s face last night when she flushed it and it stung.  However it only took two go’s to get another one in.  The installing nurse beating herself up about that saying she should have gone with the second position first but the one that didn’t work would have been much more convenient for me.   It’s surprising the things you find yourself doing to hang onto a cannula or maybe I’m just desperate.  I had a shower earlier and despite my best efforts the sticky became un-sticky and the line started coming out and in a ‘I’m keeping this one for three days too’ way I just nonchalantly eased it back  in.

I now have a private room courtesy of a cold/flu picked up presumably from the previous ward. When the nurse asked which ward I’d come from for infection control purposes, I remembered that I’d almost physically recoiled in my bed on Wednesday or Thursday when the neighbouring patient’s grandson was coughing and spluttering.  She did eventually tell him to go and wait near the lifts until his mother had finished visiting, which he interpreted to mean ‘go and stand in the corridor and cough there’ instead.    The nurse pointed out that other wards aren’t as keen on infection control and it all fuelled the case for haematology patients not being farmed out just anywhere around the hospital.  Plus the bay I’d been in would now have to be closed.  The sister said I shouldn’t fee l like I’ve got the plague as they all come in with their aprons, gloves and masks on as after all it’s probably only a bit of snot!

I also have my own personal toilet and shower too which are ensuite in a one door down the corridor and the end of the corridor respectively kinda way.

I did feel somewhat better Friday from about 1000 to 1600 but then I needed a nap presumably as a result of a temp spike.  Saturday wasn’t too bad at all despite a bit of a restless night and ‘nil by mouth’ from 0300 until after the ultrasound – which was done and dusted by 0930.  But when you wake up at 0500 and think its 0700 with a raging thirst it’s all very inconvenient.

And Friday night we had a little mortality check.  B started to ask me something then got all tongue tied and said he’d changed his mind and I said just spit it out.  So he did.  ‘Do you feel like time is running out?’  And I said ‘Yes.’  Because for the first time ever on Thursday and Friday I did.  Even when the transplant doc had said that without a donor transplant the prognosis was really poor I didn’t feel it.   However it’s stopped now and I’m pretty sure I know what caused it.

If we go back to the beginning of August (before I knew about my transplant necessities) I posted about Stacy, who was having difficulties getting a donor match – a 9/10 match was subsequently found.  Anyway because I’m a bit behind with things it came as a complete shock to learn last Thursday that she’d died.   Looking back I think I may have actually been in shock because I just felt numb, I didn’t even get dewy eyed (as I am now).  And I knew that my reaction to not getting a shower was out of character and totally over the top. Whereas I should have been annoyed I ended up in tears in the toilet with the time running out feeling, trying to leave a phone message for B and being unable to speak.

So since I am a huge believer in not getting sand in my ears (from having my head in the sand – sigh – it’s not the same if you have to explain them) and just facing things head on I caught up with Stacy’s Caring Bridge site late Friday morning from the point at which a donor had been found and it all got a little too close to home.  Now don’t get me wrong Stacy had had a much tougher time with treatment than me, was younger and had been dealing with myeloma for longer but the circumstances at the time she died where so familiar – she’d been receiving treatment to reduce the myeloma burden prior to transplant and was dealing with low blood counts and high temperatures.

Now I’m past the feeling of time running out (though will be avoiding number 11 bus routes) I simply cannot comprehend the loss of someone as vibrant and alive as Stacy to her family and friends when they were so close to achieving a potentially good outcome – even the last entries by her sister in law contained humour.  Though I didn’t ‘know’ her that well I found it heart wrenching to look at the photos of her and her little ones this time.

Additionally of course there is the sad announcement over at Sid’s blog, someone else who ‘lived’ with myeloma for 10 years.

Both these show me, once again, that we need to make the most of things with or without myeloma – not just the big things like high days and holidays, but the little everyday things that a lot of people don’t even think twice about.  For me these are spending time with my two Bs, family and friends, laughing, crafting and of course blogging.

Finally I’d like to point out that despite what might be said to the contrary by a cleaner and a nurse (particularly the cleaner who may, or may not, have seen the rear of a naked man walking into a swimming pool) I haven’t been watching porn on my laptop in my private room.  It was a bank heist  movie and then a spooky horror film – honestly!