It wasn’t the geriatrics that needed the ambulance

Guess where I am.  Thinking about it that’s not difficult enough, heck its not difficult at all – chances are if I’m on a short break I’ll be in The Royal – so have an attempt at what brought me here, other than an ambulance.  It didn’t even have sirens on and indeed had blacked out windows on the sides rather than no windows.  I’m pretty confident that you won’t guess – as I never would myself.

Yesterday I went to Willowbrook Hospice to the crafting with geriatrics day, I mean Day Therapy.  There were a couple of really old dears there one was 94 this July but they were a hoot and really nice respectively.  Willowbrook is aimed at people with cancer and other life limiting illnesses and I think one of the other ladies had had a stroke.

I’d felt tired but not majoraly different from the usual lethargy associated with being anemic – it turned out I was just 0.3 from target at which a transfusion is given – but otherwise okay.  I crafted when I got there and then sat in on the discussion ‘Anxiety Management’.  I didn’t know whether I would learn anything but thought I’d give it a go so I’d know whether I wanted to sit in on any others.  We then had lunch – a gorgeous tomato soup, cottage pie (which I managed to keep down despite throwing up the last two I’d made at home) and eve’s pudding – there was even red, white or rose wine on offer – I had orange juice I’ll have you know! The last activity, or should that be planned activity, was a relaxation.  None of the activities are compulsory and some attendees went back to the craft room.

I made myself comfy in a recliner with a bean bag type neck pillow and a triangular cushion under my arns – because this is how they support them.  After some muscle tensing and releasing we started a meditation, I guess.  The lady holding the relaxation told us to imagine a luxury resort with a fantastic room, a pool and… well that’s all I remember the next thing I knew I was sitting in the chair minus the cushions and a lady, who turned out to be a doctor, was testing my reflexes and asking me stuff accompanied by a nurse.  She then said I’d had a turn and I noticed the portable dividing screen behind them.

As I was capable of walking I got to go and sit at the dining table and people asked me if I was feeling okay.  ‘Yes’ I answered thinking ‘Of course, I’m fine’.  It was home time now and B was collecting me.  I rang him and asked him to come in – fortunately he had his phone on which isn’t usual.  I can’t know remember if I’d been told to get him inside or just did it.

One of the nurses took me into a side room and I asked what had happened.  She said I’d had a seizure!  I have absolutely no recollection at all.  Now if I remember rightly they’d phoned the haematology team and subsequently an ambulance to take me to The Royal.  As I wasn’t an emergency and they had these to deal with first they’d get to us as soon as they could.  Bearing in mind my ‘turn’ was done by 2.30 pm -ish we were still ambulance-less by about seven.  One of the volunteers, who’d stayed behind, chased it up again.  Meanwhile both my Auntie Ann and friend Chris were heading to The Royal.  Chris after tea but Auntie Ann straight from work.  I left a message and sent a text and she decided to come to Willowbrook instead or rather as well since she was at The Royal car park when she got it.  I’d been given some sandwiches and mini cakes…

and B had been home and then called back ready for work and had half my tuna sandwich and a piece of cake before going back home and taking Bud out for a walk – it seemed the better option

The ambulance turned up eventually and it wasn’t even one of the regular emergency vehicles, it was a converted (properly) minibus with blacked out windows.  I realised about the windows as I waved to Auntie Ann as we went past and then the penny dropped that she couldn’t see me.

We arrived at The Royal and Chris was waiting outside.  We got shown into a four bed room in the Acute Medical Assessment Unit and I got to keep the blanket I’d been given in the ambulance which although proclaiming to belong to ‘Dewsbury & District Hospitals’ was, I mean is – as I still have it, lovely and soft.  One of the paramedics said it reminded her of a baby blanket.

B had been panicking about my peritoneal dialysis fluid exchange as I should have done it by three and when I got to the assessment unit and asked the nurse said she wanted to speak to the renal docs before I did it – if that was okay.  I’d spoke to one of the PD nurses and he’d left a gift package for me that needed collecting from their unit.

I slept really well, or so I thought.  I woke up about five for a wee and found I had a bandaged cannula in the back of my right hand with an IV attached to it.  The nurse disconnected and I said that I didn’t even remember having the cannula put in.  She said I wouldn’t they’d given me something to ‘calm me down’.  Now it was early and I was more than half asleep so I basically went back to sleep.  When I woke up properly I thought ‘calm me down?’  Well I figured if I’d been with it enough to make a decision I must have said okay so there was no point fretting and if it wasn’t possible to consult me then…! Well there was no point fretting over that either really.

Just after nine a face I recognised appeared round the edge of the curtain next door – it was one of the blood doctors.  He asked me what I’d been told to which I responded nothing.  Apparently I’d had another seizure (sounds a bit more medical than fit) in the night.  As it turned out I had the neighbouring young lady who was staying with her grandmother to thank for alerting the staff.

I had a CT scan on my head yesterday which showed no evidence of a bleed or an infection – and am booked in for an MRI anyway which will now be brought forward.  Some of the medications I take can cause seizures but I’ve been taking them for long enough that this side effect should have happened by now.

I feel generally alright – if tired but then again I am anemic so that could be the result of some of the tiredness.  Last night I could feel myself nodding off at half nine and was going to do my PD exchange at ten.  So I put the alarm on my phone just in case.  I woke up at 4.15am and possibly only then because I needed a big wee.

Tonight I’ll be telling the night staff to wake me at ten as well since last night not only did I sleep through the alarm but also through B ringing me at 11.30.  I wouldn’t have minded if I’d been in a proper sleeping position but I was still sitting up in bed with the bedside table across the bed and yet had managed to get nearly seven hours.

The IV I had in the early hours of Friday morning was an anti-epilepsy medication which I’m not on in liquid form.  You know we had a little Pomeranian that developed epilepsy as he got older but if everybody’s fits are the same at least I now know Whisky wouldn’t have had any recollection of them at all.  I once fainted and remember the world ‘closing in’ but there was none of that with these (well one at least I was asleep for the other) and if I hadn’t been told I would be none the wiser.  B suggested it was going Crafting with Geriatrics that had caused it while I said it was just as well I had as I was certainly in the right place.  I mean what would have happened if I’d been at home.

Needless to say I get to stay in (in my own little room at the moment with an ensuite toilet) while a source  for the seizures is found.  B’s been to the wool shop today and got me some exciting new yarn to bring in – it’s alright don’t panic I do have some crocheting with me – I took it to the Therapy Day!

I need a foot rest

This is what I can currently see, although not at this exact moment obviously, on the back of the toilet door when I use the facilities.

This raises two points –

1)  No we don’t have this on the back of the toilet door at home.  I am indeed currently in the Royal on an extremely last minute package deal.  By the time I’d been informed that I needed to be in around 12 noon I had an hour and three quarters to get there after I’d; arranged for someone to take me as B was in bed, pack clothes, pack toiletries, pack knitting, netbook, phone and chargers, put some washing in, take Bud for a wander in the wood (I did this first – got to get your priorities right) and have a quick hose down.  I’d said I’d be in about four but apparently that was too late and the Bed Allocation Team would put someone else in it –  in my bed!!!!!

So I  laid claim to my bed, apparently it’s been really hectic and a fellow patient, I’ve met on the ward three times before, said that the bed next to mine had been empty between patients last week for a whole half hour.  I still don’t know if I’ll be able to do the peritoneal dialysis (PD) whilst having the DT-PACE chemotherapy or whether it will be back to the haemodialysis.

2)  I don’t know about you but if I put my elbows on my knees my back isn’t that upright!  And now more than ever it’s sooooooooooooo important to be regular in the bowel department.  Apparently being constipated can cause all sorts of issues with the PD – the bowel pinching the dialysis fluid and even the curly coiled end of the catheter can flip up out of position and may need ‘help’ to get back into position if it can’t do it itself!  I don’t know the specifics of the ‘help’ but I do know I’m taking the Senakot tablets regularly since I proudly announced during training last week that since changing from codeine to Tramadol I go once a day nearly every day and discovered that they like you to go twice.

Well I have to go, I’ve got to go and see how close I can get to the correct position.

Short Break

If I said I was having an impromptu mid week short break where’s the first place that springs to mind?  As much as I’d like to say ‘No, you’re wrong, I’m in Prague’ if you did say the Royal in Liverpool you would indeed be correct.

I’m having my peritoneal dialysis (PD) catheter/cannula fitted today and was expecting to come in this morning at 7 am.   However about ten minutes before dialysis finished yesterday a nurse off the ward I’m currently on came and introduced himself and mentioned coming in yesterday, had I brought my stuff – well of course I hadn’t!  After consulting with the doctor who is putting the catheter in and I needed to ring last night about 5pm as there was someone due to be discharged between 5 and 6 pm.  Poo!

On one hand at least I didn’t have to go to bed at home thinking ‘Aahhhhh I have to get up and go in the morning’ but on the other it’s another night in hospital that I wasn’t expecting.  In fact it might be two as some people stay in the night it’s put in particularly if they have dialysis here the day after.  B thinks this is quite a good idea – I do in theory but in reality it sucks – I’d much rather be in my own bed with Buddy.

I’d had my day planned around going in on Wednesday morning, I was going to Armchair Yoga in the afternoon, then maybe a walk with B and Bud, my last bath and then Chris was probably coming round – so that would take my mind off things – because the insertion of any line gets me a little windy but this one in particular has.  So I went to yoga anyway, missed a friend who called with some homemade jam and a bag of treats for Bud by 10 minutes (‘Why didn’t you ring me on my mobile’ I asked B ‘I thought you’d be driving’ as it was it was just as well because i’d left it at home), took a call from Chris saying she should be able to call if she had a car and then said she’d take me in if I was going, took a call from the renal nurse at practically bob on five saying that there was a bed free (B handed me the phone!), half packed, went rushing off into the wood opposite wearing a dress with no tights and pink wellies after I saw a little Scottie dog out there apparently on its own – said dog rushed off like the clappers when I shouted it and it turned out there was someone with it but miles away, showered, forced down half my tea, got in the car with Chris and claimed my bed.  I think we got here at eight ish.

When the nurse booked me in last night it turned out that I’m only having the catheter/cannula installed this afternoon!  Usually they are done in a morning but they’d checked with the doctor and it’s only this afternoon so really I could have stayed at home – I’ve only had the laxative this morning as well.

I’d taken my Thalidomide extra early to get it in before I left home and so I didn’t have to start saying to the renal staff ‘You need to put gloves on to dispense that one’ so when Chris went at half nine I started typing this but was nodding off so I ended up watching ‘Big Fat Gypsy Weddings’ on the netbook was well away by eleven. The doctor woke me up apologetically at quarter to one to clerk me in  – she was still on at eight this morning.

I’m on a ward of six as opposed to the usual four in haematology but surprisingly (and against Chris’s opinion too) there was no disturbances during the night (other than the doctor), there was blood taken at about seven thirty ish but I was awake then anyway and I got to have the laxative drink – which has worked you’ll be glad to know!  I needed to let them know if it didn’t and I could have had another one because, and here’s something I hadn’t thought of, the nurse said she didn’t want me getting the urge to go while I was having anything installed.

Oh, and you know you see and hear all those jokes about hospital gowns opening at the back and exposing people’s rear ends well I’d never seen this in real life – until last night.  A lady with a gown on and a cardy got up to go to the loo and there she was with a HUGE gap in the gap – fortunately she had some sort of undergarment on – but it was like those people who rubber neck at road accidents I didn’t want to look but had to fight to keep my eyes away – Chris clocked the sight and we both started tittering.  We then had a discussion on how it’s neigh on impossible to do with the way gowns close now but then it happened again this morning but with someone else!  And then the first lady had apparently taken her’s off completely – fortunately I didn’t see and this I only glanced over (I didn’t want to it just happened) when I heard one of the staff suggest that she might like to put it back on – I only saw a bit of shoulder.

Royal Holiday Day 3

Day one of this cycle of DT-PACE finished 2.15 am this morning. With the dialysis only finishing at quarter to midnight on Thursday it was about one by the time it was hooked up. There was actually a slight discrepancy between the amount of one of the drugs on the prescription and on the actual bag of goodies. This resulted in one of the nurses ringing the doctor at nearly one to check it was okay. I didn’t mind when I found out because it was the doctor that had had THAT conversation with me in October. You know it was only a couple of weeks ago that B realised which doctor this was. He hadn’t made the connection and stated that he thought he seemed nice. I said he may very well be but I’m slightly biased. And indeed Auntie Ann said he always says hello if he’s at the desk when she passes whereas some others just keep their heads down. I said he may very well nice be but I’m slightly biased but fortunately obviously not to the point of being openly so.

So far so good I feel fine. We had takeaway pizza last night and were planning on a Chinese tonight and then we realised that dialysis were unlikely to be as accommodating as haematology with regard to providing plates and cutlery. So once again we opted for pizza as it was easier to eat. However as we were working on the basis that we would be going down about six or shortly after we thought we’d order when to got down there. In fact one of my fellow patients offered to combine orders to get it delivered and then her husband asked if we wanted him to pick ours up as well when he went over for theirs. By five to seven they had phoned to say a porter was on the way. By twenty five past seven B was all for us walking down. When I floated this past the nurse covering the ward she said she’d ring down. At five to eight it turned out that they’d had a problem with a patient but had forgotten to ring us and it would be nine o’clock. So B stormed off to get the pizza saying that if the porter turned up before we were finished they would just have to wait. As it happened the porter did turn up early and it was a really pleasant nice one that I knew. He did say he would ring down and come back but B decided we would pack up the pizza and head down. In the end I was connected about quarter past nine so it’s gonna be quarter past one by the time I get disconnected and then I need to get back to the ward get washed, changed, mouth care (okay that’s 30 seconds but I felt the need to state that I was doing it), get my meds and get hooked up to the chemo. I don’t think I had so many late nights as a teenager and then I got to lie in to as no-one was forcing, I mean offering, me breakfast at eight am.

My stay so far hasn’t been entirely uneventful, I mean so far fortunately from a medical viewpoint it has which is obviously paramount, but we have had a couple of booboos. We’d not been here an hour on Thursday and B knocked a bottle of Dr Pepper off the table onto the floor. He then offered me it or the Pepsi. I had wanted Italian lemonade but they didn’t have it. I choose the Pepsi. B then opened the Dr Pepper and it squirted everywhere. Fortunately only a bit got his jeans but there seemed a fair amount on the floor – not much went for the bottle but isn’t that how it is it always looks more when it’s free.

Then yesterday I pushed my netbook back on my table and knocked off the full water jug that was behind it. I hit the end of the bed and most of it landed on the two blankets I’d stockpiled for the night so saved the bed itself but some got the floor. As it was because I was hooked up the young patient in the next bed and her friend got to it before I did and even when I offered to take the second lot of paper towels off her insisted on finishing it off. ‘Ha!’ I thought at least B didn’t see me do it just before he walked in to see it being cleaned up!

B punished me for being bad

He made me watch The Jeremy Kyle show while we ate our lunch!  How barbaric is that?  For those of you not familiar with this high brow presentation it’s kinda like a low brow version of Jerry Springer.  Seriously the people that appear on the show are so, um well, rough is probably the politest way of putting it.  And what makes it worse is that this applies to ALL the guests, not just the ones who are having their baby DNA matched to the 10th possible father but everyone.  There was a show a few weeks back that was about a health issue and the parents looked as though they’d just been asking people for change outside the studio.  I could only think wardrobe was responsible for their clothes as it seemed bizarre that they should look so unkempt too.  Well either that or there is a dress policy on the application form.

Anyhoo what had I done to deserve this punishment.  It’s all the blood’s fault.  I had been feeling pretty good anyway from Tuesday but after the two units of blood yesterday I felt particularly good today.  This resulted in me doing something rash whilst B and Bud were out walking.  In the midst of getting some paper out of the loft to wrap B’s birthday presents I thought ‘I wonder if I could put the boxes of Christmas decorations away myself’, as B has been threatening to do it since well, Christmas actually.

It turned out I could, with a bit of a struggle I admit.  Now I knew B wasn’t going to be happy but I thought it would take him a while to notice they were gone since most were under my sewing table but I was only finishing putting the last box up there when the two Bs got back.  So when we sat down for our watercress sandwiches shortly after I got subjected to Jeremy Kyle and as if that wasn’t bad enough B turned over before we found out if the baby was fathered by the guy who had been on the show once before to tell his then girlfriend that he had a baby with his ex-girlfriend, yes the same baby that his ex-girlfriend was now saying had a 50/50 chance of being his.

Needless to say I won’t be doing it again this year, I couldn’t take another episode.  Although I’ll be safe for the next few weeks.  We got a phone call at six this evening, when I thought I was safe for the day, informing me that there was a bed available at the Royal and I should go in at lunchtime tomorrow.  It’s a good job I’ve only one thing left to do on my list plus it’ll give my back a chance to get out today’s exertion.

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!

Trout Pout

Tuesday I had some lovely visitors and these two called as well – just kidding Lorna and Mike were the lovely visitors along with my Auntie Ann and B of course.  B left the ward to walk the streets of Liverpool carrying that basket secure in his own masculinity.  I’m sure he’ll save some for me.

Lorna and Mike picked a good day to visit as I felt fine on Tuesday, Wednesday however was a completely different story.    I initially put it down to being unceremoniously and unexpectedly dragged away from my breakfast for dialysis which we’d been informed the night before would be afternoon or evening.  When I got back to the ward I had a shower expecting that would  make me feel better and I briefly convinced myself it did but I didn’t pick my knitting back up.  Plus my mouth had started to get sore. By the time B arrived I was struggling to keep my eyes open.  The doc called in to see me and it turned out I was feeling poopy because my counts had bottomed out.  As I was lousy company and couldn’t keep my eyes open Auntie Ann went home early and I was in bed by twenty to eight.  It turned out that my counts had bottomed out.

Thursday I spiked a temp, not a high one, my mouth was sorer and it was worse on Friday.  I got a new mouth wash.  A friend visited who visited on Thursday said to her husband when she got home she didn’t think I’d be home at the weekend.  I got back to the ward at quarter to midnight after dialysis and was in bed at quarter past and then the new patient in the ward started and she was seriously loud.  She kept shouting and the nurse kept saying use your buzzer other patients are asleep.  They shipped her off to a side room first thing in the morning.

Friday I felt pretty good other than my mouth but I had had two units of blood the night before.  I didn’t sleep too well on Friday night and thought that this was why I felt shattered (okay I probably convinced myself I felt tired as opposed to not well).  Then the renal nurse woke me up to take my tablets and insisted I have some breakfast as one of the tablets needed food – I mean I’d only thrown up once since I’d been there – fair enough they did give me some anti sickness but as some of us know that can have questionable effectiveness at times.  Plus the tablet in question although prescribed by renal (calci chew) in my case was a haematology tablet as I’d discussed it with the renal doctor and he said from their point I wouldn’t need it.  And although I’d said my mouth was sore I couldn’t speak loud enough to explain it felt like I’d chewed broken glass.  So my bowl of rice krispies took me about two hours.  I was right next to a draughty window so ended up with four blankets doubled on me so I put the shivering down to that. Usually I would have got back to the ward and had a shower.  I got back and got on the bed with two blankets over me as I was tired and shivering and then I asked about going home.

I then promptly threw up and one of the health care assistants whizzed the blinds rounds where they stayed until late Sunday afternoon.  I got under the sheet, snuggled down and turned my phone off ring to vibrate.  Of course then it vibrated.  It was B asking if I was coming home.  I said I didn’t know but probably.  Then Auntie Ann rang and said she’d call at the hospital anyway.  THEN one of the nurses offered me a side room so I could get some rest and I said ‘Does that mean I’m not going home?’ and fair dos he said ‘No, it would just be quieter.’ whilst probably thinking ‘I don’t think so.’  I said I was alright where I was because although they would probably have pushed me on the bed I couldn’t be bothered moving.  I was wondering by this time how I was going to get up to get dressed to go home.

Auntie Ann arrived and basically let me nod off.  Then B arrived sheer seconds before the doctor.  We discussed the temp and I mentioned the shivering and basically talked myself into staying in.  So the weekend followed with excellent nurses pandering to my every whim – ice lollies, painkillers, lavender to keep the scent of food away, by the time the lady’s visitors across the way ARRIVED the side room was long gone but on Sunday due to a possible infection, a long lie in on Sunday morning, antibiotics, more antibiotics, painkillers, slavering when I drank, dribbling when I slept, more painkillers and a 24 hour cocktail of painkiller and antisickness in a pump which is still attached and merrily pumping things through a butterfly in the top of my arm.

One of our consultant’s came to see us this afternoon and unfortunately I was feeling a bit pooped then possibly due to my temp showing up shortly after as 38.  Obviously the chemo has flattened everything as anticipated (neutrophils 0.0 on Saturday) and we wait for them to recover while giving me lots of blood and platelets whilst warding off infections.  Plus he commented that my face wasn’t as swollen.  On Friday and even more on Saturday it felt like a balloon with a trout pout – although in reality my lips didn’t look that big.

My mouth has felt surprisingly better as the day has gone on and B can now hear me – well as much as ever.  Last night was a bit iffy and Saturday was impossible.  At one point he leaned in really close over me and instead of turning his ear to me faced me resulting in me croaking ‘Don’t breath on me.’  I tried writing things down but he couldn’t read my writing, something I should have realised from the way he queries the shopping list.

I promise to blog more in future even if it’s just small, gibberish filled posts as opposed to long gibberish filled ones.  Plus let’s take a vote – if enough of you say yes I’ll post a pic of what my jim jam top looked like after my canula just slipped clear of its mooring this afternoon.  I personally thought it was pretty impressive but then again I could be easily pleased.

Back to blogging

Sorry I haven’t blogged, I’ve been feeling pretty good, as evidenced by the crocheting the previous week, making Christmas cards last week and now some knitting and a shiny new toy…

well okay it’s not actually shiny it has a matt finish.

Try as I might I couldn’t get onto the hospital internet and kept forgetting to ask B for the dongle, then it turned out it was in the bag I had all the time and then the laptop bust.  Now it did actually work after I spilt orange pop over the table it was on but who’s to say when it got sticky it may have changed its mind (apparently the laptop doc did say he noticed some spatters of something when B grassed me up).  So B took it home to take it to get repaired and managed to get it to switch on, brought it back and surprise, surprise it didn’t work.  So off it went yesterday (last Thursday) to the laptop hospital where the very nice computer doctor managed to retrieve all my documents and photos for a very reasonable price but needed to send the laptop away for further investigations.  So at the suggestion of my Uncle Ray earlier in the week B bought me an early Christmas present of a net book – with the help of a shop assistant speaking to me on the phone and then the fraud team from our credit card company checking the purchase!

Medically for me here’s where we’re up to.

We started the new treatment on Monday, it’s DT PACE and has never actually been used at the Royal before so involves me being kept in to monitor side effects for approximately two to three more weeks.  The drugs involved are

Thalidomide 200mg currently, dexamethasone (only 10mg not 40mg because we know me and dex don’t mix well), doxirubicin (doxil) 17mg, 8mg cisplatin, 35mg etoposide, 340mg cyclophosphomide.

The first two are tablets and the others have been infused over 24 hours.  Usually the tr

And this would be where technology, on Friday. stops me short again as the new net book runs out of battery charge and it turns out the mains cable doesn’t work.  So B takes the net book along with its snazzy little carry case home on Friday.  He then takes it back to the shop where they provide him with a new cable and he brought it back on Saturday.  However he brings it back WITHOUT THE DONGLE!  ‘And how did you think I was going to connect to the internet?  By magic?  What possessed you to take it out of the bag?’  I enquired gently!  ‘I don’t know I didn’t think you needed it!’  A casual exchange of views, mainly on my part, then ensued.

So since B isn’t visiting me today (Sunday) because he was on holiday last week and he starts back at work tonight, and my dialysis today is one o’clock pm (turned out to be two) rather than seven am it means he won’t have time to visit thus leaving me dongleless until Monday afternoon!

B reached for the snazzy little bag on Saturday night to move it into another bag for some reason known to him alone ‘Don’t touch it!’ I shrieked. ‘Why,  what?’ ‘At the rate you’re going you’ll probably end up taking it home by accident and bringing the dongle in on Monday but no net book, so hands off!’

So back to the treatment – its usually given over four days but due to the dialysis it’s run longer.  I had dialysis on Monday morning and then 24 hours (in theory, in practice it runs over) attached to a bag of doxirubicin and a separate one with cisplatin, etoposide and  cyclophosphamide in.  And then Wednesday, Friday and then Sunday with the last bags of treatment starting last night.

The renal team agreed my tunnelled renal neck line could be used for the chemotherapy only, so no bloods can be taken from or given through it.  This meant Friday and Saturday I wasn’t able to knit as the only place the on call doctor could get a canula was in the crook of my elbow so I had to keep my arm straight (as last time I ignored the canula when it wasn’t in use and crocheted and it came out all kinky).  The canula was for a unit platelets as I was down to 14 and two units of blood as my haemoglobin was 7 and we couldn’t wait until Sunday to top up while having dialysis as I would have been feeling pretty rough by then.

I spent Thursday looking like a half deranged Rudolph.  I started with what we thought was a nose bleed on Tuesday night, it was okay by Wednesday morning and then it started again Wednesday afternoon, so I sat there dabbing politely with a tissue while I had visitors which was really nice.  It wasn’t pouring it was just a constant little drip.  By the time they left I resorted to rolling up a wad of tissue and sticking it up there – and at least I could knit.  It carried on through Wednesday night and even though we tried doh dah watsit acid (something that promotes clotting) that didn’t help.  So Thursday morning, one of the new rotation of junior doctors stopped by to give it the once over.

After questioning me on whether I’d been poking anything with a finger – a conversation I’d had with the friends visiting the previous day – it turns out it wasn’t a nose bleed at all.  I had a little cut right on the end of my nose and which needed pressure applying to it rather than all the dabbing I’d been doing which was just keeping it flowing.  So one of the student nurses had the task of trying to get a tiny piece of gauze and sticky dressing stuck on the end of my nose!  This lasted a few hours and then another improvised one saw me through to Friday.  Now I have a little scab with strict instructions not to pick it!  Because I was hooked up I couldn’t change my top and when Auntie Ann came in on Saturday she said it was nice to see me in something not blood spattered.

I haven’t been sick for over a week, since last Saturday night, but after the piece of pizza, chicken dippers and cheesy bites came back I managed another four cheesy bites!  That should be I hadn’t been sick – last night’s jacket potato put in a reappearance as did the tiny bit of jacket spud I had for lunch today – so maybe no more potatoes!  And do you know how hard it is to be sick when the catering ‘hostess’ is making you laugh.

The Prof stopped by on Friday and acknowledged that I’d compromised on taking the steroids but felt that at the much smaller dose the side effects would be minimal.  They may very well have improved my appetite so far but otherwise – well let’s not say it out loud just in case!  The other myeloma doc is off gleaning information at the ASH conference in San Diago.

As my appetite had been poor and my potassium levels were actually now low the renal dietitian is letting me eat what I want at the moment.  With B being off last week I have been spoilt and for most of the nights this last week we’ve had takeaways – either pizza or chinese.

Oh and I have a fat knee – well both are a bit chubby (and no they’re not normally) but one in particular last night (Saturday) was possibly full of all the takeaways.  It would appear its likely to be pseudo gout as the dose of alluprinol (to stop uric acid build up) is lower because of my kidneys.  It’s not painful just stiff when I bend it and if I happen to forget and squat down getting back up is quite interesting so I have to remember to bend from the hip.  As at today (Monday) fat knee more or less back to normal, still bit stiff to bend but it’s definitely been on a diet.

I had to vacate my little side room and have been on one of the four bed wards since last Tuesday night but I think since I’m feeling better I actually prefer it although the elderly lady in the opposite bed is making me jealous.  On the fluid restriction I can basically drink 500ml more than I wee the day before (so intake is averaging at 750ml) and I may only wee two or three times at day meanwhile she’s passing more water than a race horse!  She’s also a bit mutt and jeff (deaf) which has resulted in conservations such as…

‘Your daughters look like each other.’

‘Eh?’

‘Your daughters… they look like each other.’

‘My hair looks better.’

‘Yes, it’s nice!’

And the good news this afternoon I may very well be able to go home at the end of the week.

This is what happened…

Last Monday morning I woke up at about seven went for a wee, got back in bed, got up roughly 45 minutes later with a midriff region pain. I didn’t really see B as he was going to bed but fortunately a friend had said she’d take me to the Royal as when I’d had platelets and a bag of Hartman’s Solution (to help flush the kidneys) the previous Thursday one of the nurses had asked about blood and when I said I felt okay said I should come back in on Monday if I felt blah. Needless to say this was fortunate because if I hadn’t intended on going I’m not too sure if I’d have phoned up about the pain or just got down on the settee and see how it went. Although it was PAINFUL. Oh, and on the chest x-ray on Thursday a thickening had shown up on my fifth left rear rib – a plasmacytoma so I was going to be referred to an oncologist regarding radiotherapy. When I asked it was visible in the last x-rays but not unless you looked for it specifically but not it was showing slightly more. When I didn’t even raise an eyebrow let alone protest at the prospect of being admitted, the registrar said I must not be feeling well. And so by teatime, and after a copious amount of blood tests (including an arterial one), an ECG, vomiting and oramorph, it was unclear if I had pancreatitis, a clot or if it was muscular. What was clear was that my kidney function was going downhill, my potassium and calcium were high and I’d probably need dialysis. I couldn’t have the usual CT scan to rule out a clot because of the contrast dye’s affects on the kidneys. Then the renal doctors wanted a catheter fitted so a close eye could be kept on fluid ins and outs. I did protest about this, even offering to wee into a jug like during my stem cell transplant but it was a non starter. And by the time I had a cannula in each hand with saline in one and Bicarbonate of Soda in the other using the loo would have been a tad difficult. Two renal docs came to visit and said they would provide dialysis over the acute period but not long term. It was only when they changed their mind about an hour later that the implications of the initial decision dawned. Then I had a kidney scan which showed that there was no blockage of the tubes, just some fluid around the left kidney. I initially thought this meant I didn’t need dialysis but I’d misheard and this meant I wouldn’t need anything poking directly into a kidney. My potassium and calcium were both high. The registrar had left specific notes on my file as to what should happen if I ended up in ICU as they didn’t want an individual making a decision in the middle of the night. You know I cannot remember how I got to my room, by bed or chair, but I got there and left it again at midnight to have a femoral line fitted – I’d had a bag of platelets earlier and apparently it’s easier to apply pressure here if anything kicks off than at the neck. So about two in the morning I was having two hours of dialysis and got back to my room about 4.30am and having travelled by bed the extent of getting ready for bed entailed wiggling my bra off and leaving it dangling from the IV line. Tuesday morning a pancreatic surgeon called by about six, I think, and had a poke and a prod but fortunately my midriff wasn’t as sore as it had been but I couldn’t eat anything until Thursday. Then another renal doc called by. A doctor and nurse from Critical Care. The doc said I looked quite good to which I said that a doc yesterday had said I didn’t look like the numbers said I should, to which the nurse said that was because I was an individual and not a number. They also said I would do best to avoid them – they were actually lovely. Later Tuesday morning I had a radioactive photo to rule out a clot. And our consultant asked what time he could call by and see both of us! Gulp! So later in the afternoon we got to make a decision – well I say we I just made it and B happened to agree. I was remarkably stable all things considered. But basically there were two ways forward – now bear in mind our consultant is extremely compassionate and wasn’t as blunt as I am – made noticeable by a friend welling up when she visited on Thursday and I was telling her. My paraprotein although having dropped initially had risen again and he felt that the Revlimid wouldn’t be able to catch up with it. (We’d had a conversation earlier and I’d said that I felt that the two and a half week gap needed because of blood counts had let it start up again just down to little things I’d noticed.) Okay so we’ll go through the downside first – they could treat the symptoms and basically make me comfortable. Or we could look at trying an older type of therapy for which he couldn’t provide figures ie, 100 patients were given it and so many got this response. Obviously I took option two. Wednesday and Thursday are really a blur of sleeping and IVs of antibiotics, platelets, Vit K to aid clotting, ECGs, dialysis on Tuesday and Wednesday night, blood, the catheter coming out, the renal dietician, fluid restrictions, cannuals, ultrasound of my pancreas and the odd bit of puking. Friday I had a bone marrow biopsy which wasn’t too much trouble at all, the femoral line came out and a new tunnelled line for dialysis only went into my neck. It was the same renal doctor that had put in the femoral line who was very nice and this was confirmed by the sister who assisted him. Mind you she also said I was a star patient and brave as my heart rate and blood pressure remained the same throughout the whole procedure. I put it down to the yoga breathing and the doc said he had been prepared to accept the credit. I did say that confidence in the doctor played a bit part and that B had said, after meeting him briefly that he couldn’t imagine him in a flap. The sister confirmed that in the years she’d worked with him she’d not seen him flap. She also said I could call in anytime to say hello, for a cup of tea or a chat which I thought was nice. Friday night the exit point for the neck line starting leaking blood through the pressure bandage and we started with the gauze wars, then the renal nurses had to delve in to get the line clamps out for dialysis. By Saturday night I was thinking of selling tickets to see my right boob – it’s never had so many sightseers. Mind you at one point with all the gauze it looked like I’d had a lob-sided boob job that could have given Pamela Anderson a run for her money. I had more platelets and the dressing applied about 2 am on Sunday stayed pretty tidy until it came off yesterday and then during dialysis the nurse cleaned it down and for the first time I saw what the line actually looked like and fortunately it’s settled down. Yesterday I had an MRI of my liver (and had a discussion on the non use of gadolinium) and a CT scan of my pancreas. Both were fine. If I did have pancreatitis last week I don’t have it now. Although I did get to sign up and give samples for a pancreatitis research programme and today I registered for an ‘Individual susceptibility to Clostridium difficile toxin disease’ study – which didn’t show up in the sample of my possible antibiotic caused diarrhoea – and which is good because it can be nasty but if I haven’t got it now it’s unlikely I will get it. I asked if I signed up for three did I get a prize. The renal doctor came to see me today and from their view they are happy to now treat me on an outpatient basis once I am discharged. The limited fluid intake of 750 ml per day, as I’m not really weeing much, has been a real bind as I am used to drinking three litres but I seem to be getting use to it and think that at home it will involve a lot of flavoured ice cubes. There’s also the change to a renal diet which limits fruit and veg but apparently one takeaway a week will be allowed so B was happy with that. At the moment I can eat what I want as I’m not really eating anything so something is better than nothing and they can monitor me. I also got a rash that I initially thought was some sort of bites – we don’t know what this is but it seems to be past it’s worse because it was really sore yesterday to press against or walk but it a lot better today. From the myeloma treatment viewpoint, the Prof was off last week so our consultant discussed it with a doctor at the nearby Christies Hospital, and its likely unfortunately to include Dexamethasone, which we know doesn’t agree with me, but they have taken advice from a psychiatrist, the dose will be very low and I’ll be monitored. This therapy is also more damaging to the kidneys but since I’m know on dialysis this isn’t the big consideration it would have been. So we’re currently waiting on the results of the bone marrow aspirate before anything is confirmed. It is hard to get the newer drugs from the drug companies on compassionate grounds anymore and it’s nay on impossible to get onto clinical trials once they have started even without my current status. Sorry that went on a bit and I’m sure I probably missed things out! Today is the first day I’ve felt anything like. I showered myself – I’m not supposed to for a week because of the line but I was very careful and B had hosed me down on Sunday – I did a little bit of embroidering, I ate a little something, I stayed awake for my visitors, in fact I haven’t had a nap at all and of course I blogged.

Where’ve we been?

Just in case you were worrying I thought I should let you know that we’re all still here but it’s been a bit of an eventful week.  I’ve been in the Royal since Monday and this is the first time I’ve touched the computer. 

 I am feeling somewhat better and since I have a free night tonight intend to catch up on my shut eye so I’ll share the full details as soon as I’m up to it.