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.

Just call me ‘Arry

As in ‘Arry Potter since I’m residing in a cupboard albeit not a cupboard under the stairs (I cannot take the credit for that comment it was one of the sisters that made the comparison).  Maybe Harry Plopper would be more appropriate – a lá Homer Simpson’s pig in The Simpsons Movie.

I do have two doors but no windows.

And there’s my buzzer in there too – because I just knew you’d want to see it and well, I er, pointed my phone the wrong way to take the pic!

So what exactly have I been up to since I got admitted – let’s see…

I got to go out last Tuesday afternoon into Liverpool nearly shopping – only nearly because I got to the till in Primark with a pair of trousers, a cardy and about 350 pairs of knickers to find I was totally unable to remember the pin number for my credit card and even though Primark is a cheap shop the £2.00 and coppers I had in my pocket wouldn’t cover the cost of the items.

With B taking me out for tea as well I was shattered on Wednesday, my shoulder pain was also quite severe which didn’t help and when Auntie Ann suggested going home earlier than usual so I could get some sleep I didn’t exactly protest.  The day nurse had asked if I wanted additional painkillers on top of the paracetamol and Tramadol and I’d said that just at night would be good – the pain had stopped me nodding off on Tuesday night and then woke me up a few times.  Later in the afternoon I asked for some more but the junior doc said that with my kidney issues I could only have it the once.  It certainly helped that night and if the pain had persisted I would have asked for something else on Thursday but it eased considerably and has now gone completely.  An x-ray showed no myeloma damage but a ‘touch of arthritis’.

I got to go out for a wander on Tuesday as the DT-PACE treatment didn’t actually start until Thursday due to my peritoneal dialysis (PD).  It raised a number of questions – not least would I be able to do it at all through the treatment.  As it turned out I can and because I now have some kidney function the renal doc was confident that for the length of the treatment I could manage with 12 hours of PD per 48 hours.  It has resulted in me having to get up at two, three and five in the morning to pop the PD fluid back in.  It was supposed to be midnight but with the initial lot of drugs being a bit late arriving and the bags running slightly longer than 24 hours it got later.

The renal doc’s only concern was about doing the PD at midnight (and the blood registrar did ask if I’d need help from with it) and was a bit amazed at me doing at 3 am ish (ish because I slept through my alarm and the nurse had to wake me up) – but basically I much prefer this to going down to another ward for hemodialysis – plus it results in statements such as ‘I don’t think that was my wee this morning’.

I have to wee in a cowboy hat and note what I drink – technically referred to as a ‘fluid balance’ and this morning one of the health care assistants was concerned about the look of one of ‘my’ wees.  My hat’s are numbered, in biro, 9 – my room number.  This errant sample had what looked like a 9 on it and there is no other combination of beds within the whole ward that would result in a 9 other than my room.  Fortunately she had the wherewithal to check with me and we waited for my next one which was fine otherwise I could have had all sorts of things poked and prodded unnecessarily since it then looked like someone had incorrectly marked their deposit.   When you’ve done it at a time with a five in the hour slot and am somewhere after it I for one find it difficult to say I definitely had a wee never mind recall exactly what it looked like.

The big problem with the PD was that the fluid sitting working busily in the peritoneal cavity clearing out the toxins would have attracted quantities of the chemotherapy drugs which would have had a two-fold effect.  Firstly reducing the amount that circulated in my system going about it’s proper business and secondly potentially causing problems in that area – too much heavy partying going on and not enough working.

So the schedule before delays affected exact timings should have been –

Thursday 12 noon – drain PD fluid, start 24 hours chemotherapy

Friday 12 noon – chemotherapy disconnected

Friday 12 midnight – start night time PD

Saturday morning – change PD fluid

Saturday 12 noon – drain PD fluid, start 24 hours chemotherapy and so on.

The x-ray of the bump on my head showed no myeloma lesion so I got to have a biopsy.  I have to say I wouldn’t have been at the front of the queue to have a needle stuck in the back of my head but it was actually okay.  As there wasn’t enough material on the first go I got to do it twice.  It was just like being stuck with a needle for a blood sample but the ‘stuck’ sensation carries on and wiggles about a bit.  The lady who did it, who was a lace knitter and loves Ravelry, had a look in the microscope right outside the ward and said that nothing looked untoward but they would analysis it further.  I said I’d actually been thinking I may have always had a lumpy head but not noticed but it has gone down a lot today – Auntie Ann is leaning towards me having bumped it.

As it turns out that we have a match for a donor stem cell transplant I get to have an MRI of my head and shoulder to ensure there are no myeloma related surprises during the transplant.  The registrar mentioned this last week, not the match but the transplant – I didn’t ask about a match because I was concentrating too much on the thought of someone sticking a needle in my head but B and I saw one of the transplant docs on Monday and there are two ‘matches’ with exactly the same mis-match at CW something or other on the light bit of the relevant antibody – if I remember correctly.  It’s not a major one and another doc said that a minor mis-match isn’t necessarily a bad thing as it can help participate in the whole graft vs host and subsequent graft vs myeloma effect.  Something I did learn during the course of the conversation with the transplant doc is that it can be quite distracting to have a few grains of rice sitting on top of the end of your PD cannula which is itself tucked into your bra!  I was just tucking into the sweet and sour chicken and rice that B had brought me when he arrived and said I’d rather speak to him then than wait however I didn’t feel that rummaging down my bra to extract the offending food would have been appropriate.  The transplant could be in five to six weeks.

So back to my cupboard.  I was initially in a six bed room.  One of my fellow holidaymakers got swabbed positive for flu – a flu not already in the whole hospital so brought in by her or her visitors.  She got shipped off to a side room and the bed was blocked.  The five of us remaining got flue inhalers to take.  Another vacationer went home on Saturday and that bed was blocked too and the same on Sunday.  A frequent tripper here (who’s been partaking of the facilities every time I’ve been in since November) went home for a few hours on Saturday and had to come back to get swabbed as she’d had a bit of a cough.  The results on Monday showed a positive for another type of flu so she got a trip to an isolation room on the infectious diseases ward. Vacationer four had already left to go home on Monday so that left me on my own in a six bed room and because I was potentially contaminated that meant all the other beds were blocked so I got moved to the only cupboard, I mean room available.  It’s okay actually although I didn’t sleep too well the first night – I think it was too quiet!

Anyway it could be worse I could be on my hols in Torquay, like a friend, and be in isolation in my hotel room.  Chris phoned me earlier to ask if I was still in segregated and then informed me that they were too.  Her husband hadn’t felt too good this morning with an upset tummy and she’d mentioned this to the waiter at breakfast.  As she was getting ready to go out and leave hubby to mop his own fevered brow the hotel manager turned up, wearing a mask, and asked if she’d not go out or mingle with other guests in the hotel.  They’d had a few reports of upsets – they had checked the kitchens and any similarity in the food consumed and had found nothing that linked the cases in that respect but were being careful so she’s spent the day in the hotel room with hot and cold running room service.

The manager before he left said that room service would of course be complementary and she (hubby wasn’t up to getting out of bed let alone eating) could order anything she wanted but it would be really handy if she could order something thin they could just push under the door like pizza!

 

Sometimes you just want a good night’s sleep

 

One of the things you look forward to when you get home from hospital is a good night’s sleep.  I didn’t sleep too badly but since I was attached to various antibiotics/flushes for the previous three nights I did get disturbed a few times even though the nurses are very quiet.

B got home early on Friday, came straight to bed at which point I proceeded to have a coughing fit so got out of bed to avoid disturbing him and sat on the settee for an hour eating an ice lolly.  I then went back to bed and snuggled down for a few more hours sleep.

8:22am the phone rings until it goes to 1571 (answer service) and then it rings again.  B got out of bed and checked the number – it was his brother.  While B was checking who had called – the b-i-l must have called a third time and left a message unbeknownst to us at the time.

At 8:22am when he knows B would be in bed (not that it’s the first time he called at 7:25am two Friday’s before) and what he thought I would be doing I don’t know.

When I did get up – after not falling back to sleep properly just doing that dozing thing (that I don’t like) when you have funny dreams there was a message.

‘When did you last go to my mum’s?  I was there at ten past nine last night and the fridge freezer is broken.  It’s leaked on the floor.  We need to get another one sorted ASAP so that would be today or tomorrow.  We can pick it up either in your car or in mine because I have an estate.  (DER!) Can you go and look at Currys or check it out on the internet. (Statement not question.)  And we need to decided if the carpet tiles can be dried or if they need replacing.’  All in the tone of an emergency – to quote an old boss of mine – ‘it’s an emergency if something’s on fire or bleeding profusely’.

When B got up he sorted lunch out while I had a tootle on the web, found an ideal small fridge freezer, B gave it the stamp of approval, I ordered it and it was available for free delivery on Saturday.  Job done – well you’d think so.

It was an open delivery time (8am to 7pm) as that was all that was left.  The b-i-l wanted a number to call about this – well yes, because the m-i-l has such a busy schedule – and I’m sure if they had any timed slots available they would have been more than happy to charge us £21 for one.

Further phone calls asking whether B was going to go and sort it out on Saturday and then it turned out that when the b-i-l had called at the m-i-l’s at 9:10pm on Thursday he hadn’t emptied the freezer as he didn’t have time – I mean what five minutes – bin bag to bin!  So B went and cleared it out and wiped it down.

Saturday the fridge freezer was delivered at some point in the afternoon, they took away the old one and set up the new one and then we got a call from the b-i-l saying it was there, it needed to stand for four hours and then be switched on and was B calling round.  Now we’d had a little trip out to the butchers and green grocers to get supplies for a hot pot because that was what I was craving (it smelled gorgeous but I didn’t enjoy it) – I’d been reluctant to go but felt better for the fresh air but then needed an hour and a half’s sleep after making the hot pot and we’d decided that a little trip out to Auntie Ann’s would be nice for us so he’d see what he could do.  When he did call round at 8:30pm the m-i-l was upstairs going to bed and the fridge was switched on.  (She did shout down a request, well probably more a demand, for a cup of tea but B told her that since she was already going to bed she didn’t really want one!)

And then yesterday I went for my MRIs.  I am somewhat claustrophobic and my biggest concern is having some sort of screaming hissy fit part way through and I think it is just the thought of embarrassing myself that keeps me from doing it.  I was in there ages – at least 50 minutes to an hour and I rested by hands palms up and concentrated on my breathing (as per armchair yoga teacher’s relaxation).  I opened my eyes prematurely on the way out from the last one (lower back) and I wasn’t all the way out so I snapped them quickly shut again.   Now I hadn’t given much thought to the head MRI which was just as well.  Chris called round last night and she has always said that if she ever needs another one they will need to sedate her as it was truly awful (turns out she didn’t close her eyes from the get go).  I’d always said it wasn’t that bad, eyes, closed, relax, don’t think about the fact that you’re in a tube.  Last night I said that she is never, ever to say to me how awful an MRI is until she has had one with her head in a plastic cage.  ‘Just pop your head in the hole.’ In this plastic brace thing.  GULP!  Surely they won’t put anything on top I thought and didn’t quite close my eyes in time to avoid seeing it close in.  I don’t think I’ll ever be able to watch The Man in the Iron Mask again without having hysterics.

I am overall feeling better, temp seems to be a bit high in a morning, and there has been a little bit of knitting going on – Friday there was about three/four rows and then Saturday a few more.  I put the shawl to one side for something easier and decided to do the pyjamas for the one of the bears I’m knitting.  This is how it’s going so far…