Back in The Royal

Temp went up yesterday. Came in today at two, very quickly through A&E after B phoned the blood ward and they found me an isolation room on another ward.

Feel decidedly ropy but better than last night however throat and upper digestive tract really painful.   Discussed pain relief with both blood docs including the registrar when she called in again on her way home.

One of the ward nurses called in about 9.15 to say the were just short of on antibiotic and I asked about pain relief and she said paracetamol tablets to which I replied there was no way I could swallow them.  She then offered me soluble which makes me barf at the best of times.  After I said no again she said she’d look into it!  Fortunately a much more agreeable lovely nurse just did the medicines round and she’s hooked me up to one, given me a liquid other (that I can have every few hours to get on top of it) and gone to get me very small tablets of a third.  You never know I may even stop drooling on the pillow when I sleep.  I have been prescribed others as well but they are big tablets so might be a bit adventurous.

I also have a skin reaction that the registrar likened to psoriasis.  It’s quite sore on my hands/wrists but also visible on my face, shoulders and round my armpits – it started there last Thursday and my deodorant had done this one before after chemotherapy but not as much as this – especially when I stopped using it.  When it was being discussed with the two docs B started prodding his finger up my short jim jam top sleeve in a completely inept, clumsy and totally unprovocative manner!

The room I’m in on the Infectious Diseases ward is very nice and has its own ensuite shower room however the lovely nurse is moving me later as its a negative pressure room and is not the best room they have since my blood tests have shown I’m neutropenic.

And B got carried away with the phone before we left home, after ringing the blood ward he phoned Auntie Ann to let her know what was happening and she turned up at the ward just minutes after us.  She didn’t tell him she was coming and to be truthful I wouldn’t have phoned her until later as she was supposed to be going to the Magic Rugby League Weekend at Old Trafford, Manchester to watch her team  the Saints play their local rivals, wigan warriors (I daren’t use initial caps just in case she ever saw) and the phoned the friends she was going with and came to see me instead!

Mac ‘n Cheese

Last Tuesday I realised I was really craving a particular food item, not one I eat much and in fact I couldn’t actually recall the last time I’d eaten it.  Macaroni cheese.  I looked on the menu, the menu from which my regular menu selection for lunch and tea were cream crackers and spread cheese, and scoured it unsuccessfully for macaroni cheese.  So my Auntie Ann brought me something in.

The following morning when the catering assistant (CA) came round to take lunch orders and produced a NEW menu I said…

‘Cheese and crackers’.

CA: ‘It’s new!’

Me:  ‘As in – it’s been reprinted with Autumn/Winter 2011/12 on the front?’

CA:  ‘No, there’s new stuff on it such as brunch.’  (This turns out to be a somewhat dubious collection of items that may once have been on a shelf near items that would usually be encompassed by a full English breakfast.)

Me:  ‘Mmmmmmmmm.’

CA:  ‘Right, well you can have them for your lunch on the basis you have to order something off the menu for your tea.’

Me:  ‘Okay.’ – thinking ‘hehe I should be at home anyway’

On B’s shopping list for Thursday morning were the relevant culinary items but of course I felt just a tad like not making in for tea.  So on Friday after leaving the Royal we called at a shop opposite and I got a frozen mac and cheese (I believe that may be the US terminology) and it sucked.  Come Sunday night I felt well enough to give it a whirl, well I felt well enough initially but then it took me ages but ended up dishing it out while I had a sit down. This too sucked.  I think I may have just been too tired to enjoy it as B said it was fine – even though he’d not wanted it in the first place.

So yesterday, when I felt properly hungry for the first time in ages, I thought what the heck let’s give it a whirl – I can always get something brought in.  I didn’t know what to expect especially considering the way things seem to be heated up I expected something paler looking than I am.  However it arrived with a definite colouring of grilled cheese colour to the top.  I tentatively poked it with my fork and then gave it an experimental stab (nothing seemed to be moving) and them I ate it – I ATE IT ALL!!!!!  The first hot meal at the Royal that I have ever eaten – actually the first meal as I couldn’t even make it through a salad.  The addition of yellow mustard seeds was, I thought unusual and although visually pleasing they’re a sod when you get them stuck between your teeth.  It was pointed out to me by Auntie Ann that if I wasn’t such a smart alec I could have had it last Wednesday.

I had more today but it was slightly more, I’m gonna go with set, and as the catering assistant said ‘You can have too much of a good thing’ – so tomorrow we are entering the wild world of haddock fish cake with cheesy wedges.

And now for the non food related stuff – I’m still tired but generally not feeling unwell as such, I’m eating more, I’ve done some knitting but it’s lace and I really need to concentrate so it doesn’t mix well with visitors, needing a nap or getting approximately 350  antibiotic infusions a day or rather seemingly continuous.  The ultrasound on my heart appeared okay – the doctor hadn’t seen the report when he saw me earlier today but the radiographer said to me ‘I’ll do a report.  Everything looks fine but I will look at it in more detail later.’  He still thinks it is an infection but honestly doesn’t know where, he’s going to discuss it with a microbiologist and there may be the need for a interesting little test involving a camera down my throat which would take a more detailed ultrasound of my heart – there’s something to look forward to – so let’s all say it together SEDATION.  

Full Disclosure

Courtesy of Mike I now have internet access.  So here is an update of what I’ve been up to in the intervening period.

We got home on Friday 4 February (which now seems an age ago) to find a couple of letters from our GP pushed through the door saying ‘ring me and then get yourself over to the Royal as your counts have dropped from normal range on 31 December and there is the underlying temp.’

WBC – 3.3

Platelets – 102

HB – 7.9

So after a night on the Medical Assessment Unit with maybe an hour’s sleep, a couple of hours on Saturday on some wacky side ward that you had to be there to believe, four days on a gastro ward and so far five days on blood ward, two chest x-rays, an ECG, five canulas, umpteen blood tests – regular counts, PP levels (which didn’t give an actual PP level but the lab said it was contained within the IGA level of 18) and all sorts of cultures, wee tests, three units of blood, quite a view IV antibiotics and now tablets, numerous temp spikes – it managed to get up to 40 on Friday (and the nurse has just noticed when my temp spiked just that for the last four days it has done it at a very similar time) and a bone marrow aspirate/biopsy (didn’t feel a thing – well nothing painful or nasty) the general opinion is that pending the results of the bone marrow biopsy, as nothing else has been absolutely unequivocally  conclusive, it’s the myeloma.

The doc I saw yesterday, who we’d seen before my SCT, said he was sorry and I asked what for as it wasn’t his fault.  He said because it wasn’t that long since my SCT.

I informed him that if I needed treatment I didn’t want to take dex again as I had zero quality of life on it and B’s and family/friends’ was hugely affected too – it/I was that bad.

The doc this morning said it was likely I would need treatment and it would be Velcade.  He also said, and yes I know it is immodest to share this but hey I have a temp so I don’t care, that he admired my attitude and I was brave.  I said that that being miserable wasn’t gonna fix it unless he thought otherwise and you just had to get on with things.  They will however in the interim keep looking for an infected bug.

And apparently I have the audacity to look well and feel merely lethargic generally and sleepy when my temp spikes – I said I always have to be different but I’d see what I could do about feeling ill for tomorrow’s rounds.