Tag Archives: mutilple myeloma

The beauty of it

The whole aim of attempting to post on Monday was to basically confirm that I was still ‘here’.  However it didn’t exactly pan out – I mean I am still here but the posting bit wasn’t as easy.  So I when I managed to get it to post yesterday I thought that I would make sure I posted every day even if what I posted had no relevance whatsoever to my current medical status.  I fully intended to start today, mind you I fully intended to be the first of the three of us on the six bed bay  to have a shower today and I ended up being third and possibly missing the docs’ ward round as a consequence.

So I’d fully intended to tell you today about why my visitors yesterday looked like this…

(I was swabbed on Monday and tested positive for para flu yesterday – caught from another patient last week I’ll have you know and not from one of my visitors), who thought that the visiting myeloma consultant was a vicar who was in with us so long he must have been trying to flog me something and possibly a little something on suggested treatment.  I was going to do this before I went to Clatterbridge (a hospital just under 14 miles away) for a planning appointment relating to radiotherapy.  Needless to say I didn’t get it done before I was collected at about 1.20 pm.  I’d just, so just I had just emptied my bag of ‘out’ fluid down the sluice) finished my peritoneal dialysis (PD) fluid exchange and hadn’t even packed for my little trip out.  I went for a wee and threw some knitting, sweets and a puzzle book into a bag and set off wearing a mask – to protect other people from me.

We arrived at ten to two for my appointment at half two.  I was shown to a little office, to keep me away from the other patients and staff and well, everybody, and shut in.  As it turned out I ended up speaking to the oncologist from there that I’d seen on Monday at the Royal as she called in for a quick chat when she saw me as she was passing.  The door wasn’t initially shut.

After that I waited, knit, waited, threw up – in the sick bowl I’d brought, on my knitting, carrier bag, the chair, the floor, my cardy and my right trouser leg, waited, waited and waited with this to look at on the back of the door…

There were other more graphic drawings of the male doings but I thought everyone should know where the prostate is and how to poke it.  I had finally got planned – which involved a warm plastic piece of flat plastic being formed into a mask over my tilted back face, flashing my bare bosoms to the three radiographers and being asked questions I couldn’t really answer as with the warm flannel like plastic over my face I daren’t shake/nod my head and couldn’t speak.

I made it back to ‘the room’ in my mask at five oh four pm just as B was ringing me and was offered a drink and biscuits.  This is what I got…

Now I fully admit it could be my smutty mind but that is exactly how those buscuits were on the paper towel.  Either its my smutty mind or I wasn’t the only one who’d spent long hours looking at the back of the office door.

Because of the para flu I ended up coming back in an ambulance which was order for ‘within the hour’.  I got back to The Royal at eight by which time B had gone back home, got changed and called back in, ready for work and my Auntie Ann had waited over an hour as I think she’d thought I’d forgotten to let her know I was back but was way too polite to say so.

And now I have to go to sleep because I’ve just completed my fourth PD exchange of the day – the schedule of which was thrown well out of whack by the afternoon outing – ‘Did you have a good time out girl?’ the elderly lady opposite asked me when I got back – I can barely keep my eyes open but needed to do exactly that while I did the bed time one.  Just as well because I’d been made some toast and cheese spread, the lady in the next bed had accepted the offer but the elderly lady had said no and then asked where her’s was when the health care assistant came back with it – so she got some too – and during the exchange mine made an encore appearance.  I’d blamed the half a bowl of mushroom-y, in a very loose sense, soup at lunch time but maybe it was the intrathecal injection I had yesterday after all.

So tomorrow I may tell you about where we are up to with suggested treatment or I may just show you my knitting.  Don’t panic I threw away the first lot of knitting that got sick on it and fortunately declined the offer of a pasta carbonara from the freezer and settled for toast so it wasn’t too unpalatable coming back.  And now off to get some beauty sleep because, as my husband informed me today, I need it.  This being the reason why I sleep more than him even at the best of times.

Oh, oh and I nearly forgot, that’s how asleep I am, but we had some good news on Monday.  I can reduce the amount of PD I do.  Either my reducing the number of exchanges in a day or the number of days I do exchanges in the week.  I went for Monday, Wednesday and Friday dialysing and Tuesday, Thursday, Saturday and Sunday off.  I knew this would need verifying by B and indeed after initially saying ‘Whatever you think’ went on to say ‘Tuesday, Thursday, Saturday would be better to do exchanges’ because of appointments on Monday, Wednesday and Friday.