I have no idea what to title this one

I had been planning on my newest post being titled ‘You’ve got to be codding’ – codding being a word interchangeable with kidding and in this instance relating to a cod liver oil capsule that was taped to the back of my head during the recent MRI.  I don’t know who was more surprised – me on removing the tape and finding the capsule or the radiologist on me handing her the tape and her finding the large quantity of very short hair attached the tape.  However in light of the way today’s gone this isn’t the post I anticipated.

Today, and from yesterday afternoon really after getting a bag of blood in the early hours of the morning, I’ve felt so much better in myself.  I haven’t felt bad, bad but tired and certainly fuzzy round the edges.  In fact I think it was Tuesday I had the blood because thinking about it that was the morning I had the MRI scans, heart ultrasound and lung function test then a bag of platelets and lumbar puncture in the afternoon – I guess I shouldn’t have been as surprised as I was when B looked at me incredulously when I said I couldn’t remember exactly how I’d got the big bruise on my right thigh – when he said Bud had done it it all came back to me but initially I could only recall I’d had some sort of mishap and absolutely none of the details.

Now let’s not get too excited about the apparent wellness I feel.  Although obviously while feeling well is a good thing it may be slightly trumped by actually being well.

I’ve had various medications stopped or changed to reduce the risk of seizures and indeed haven’t had any more.  I’ve had new potassium and magnesium meds as these levels were a tad low.  As of yesterday the results of the MRI on my head looked fine, the one on my shoulder showed myeloma lesions but needed comparing to a previous skeletal survey to see if any were new.  Initial results of the lumbar puncture didn’t show anything immediately obvious.  There was a slight increase in lymphocytes (one of the defensive cells) – normal levels are 5, mine were 14.  If they had been in the 100s some sort of blind treatment would have been required and if they’d been 4 or 6 they could have been left but 14 probably needed something doing but were of a level that could be investigated further to establish the correct something.

This morning the Ward Sister/Manager stopped by (well actually she was seeing to our room today so she’d already been by a good few times) to say that one of the docs had come out of the morning meeting to say that Prof or the other myeloma doc would be speaking to me and I may want a family member with me.  Sister had no idea of the exact topic of the discussion as she wasn’t in the meeting as she was tending to the ward today.  I said there was no point me even ringing B as he’d be in bed and the phone wouldn’t wake him so she said if I wanted she’d be there – I said yes.  I wasn’t ringing Auntie Ann as she isn’t even actually visiting today as it’s her last day in work – she’s retiring.  There’s a lunch out and maybe something after work so although I know she would have wanted me to I wasn’t messing that up.

I had time to google things like ‘myeloma lumbar puncture’ and ‘myeloma spinal fluid’ before Prof took a seat in my comfy chair while Sister, a Registrar and another doc, who I have to admit I’m not sure is yet a Registrar or not but who I like very much, took positions at the bottom of the bed.

Basically the lumbar puncture showed plasma (myeloma) cells and some of the damage to the shoulder would appear fresh.  In view of this despite the DT-PACE, and the seemingly shorter and shorter remissions between treatments,  Prof felt that he couldn’t justify the resultant loss in quality of life against possible benefit a donor transplant would provide – I think I have that correct.  I’m not going to kark it immediately but, baring a miracle, we’re not talking years and years but for the first time EVER the ‘how long?’ question was on the tip of my tongue.  No treatment specifics have been tabled but I said what I’ve now said three times I think, last November, on the decision to go ahead with a donor transplant and today, I’m not afraid of dying but I am of… ‘not trying’ Prof finished off.  I’ve never said this to him directly so it looks like they talk to each other.

The only immediate question I thought of was in view of the fuzziness I’d experienced and so I asked about ‘mental deterioration’ – I don’t know how come I was so formal – but was relieved to hear that wouldn’t be an issue.  Thinking about it and especially considering he said they were always very upfront with me that wasn’t necessarily a compliment!

Sister sat with me after the docs had gone, rubbed my leg and said if I wanted anything she was on a long day.  I asked later if one of the docs could go through it with B when he got here because there was no way I wanted to be the one to tell him.  That of course didn’t pan out because I couldn’t say everything was fine when he phoned after he got up but one of the docs is going to come chat to us when B gets here and answer the questions I have by now.

B’s just got here (well nearly an hour ago now) and is not thrilled that he won’t be getting to see Prof or the other myeloma consultant this afternoon but I’d just asked Sister if we could see the other consultant tomorrow anyway and B chipped in that he’d like to see the Myeloma Nurse too.  Sister’s just come back to say they’ll both call round two thirty tomorrow.

There’s not exactly a set treatment plan in this instance as it is a rare complication of myeloma, which I’d managed to work out for myself before I knew what it definitely was.  When I asked Prof about this, and he’s not exactly a spring chicken (I am in no way saying he’s old just experienced), he said that with me the total number of patients he’d dealt with personally with this complication was now 2 – I resisted the urge to ask what had happened to number 1.

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!