Trip Tips & Treatment

When holidaying you always need certain things to ensure a good trip –

Food – Let’s say it’s a good job there’s a Chinese takeaway opposite along with a pie shop and visitors willing to bring sandwiches and other stuff in.

Accommodation – It’s a bit dated but functional.  A replacement has been approved but has been on and off more times than a er, [insert own suitable phrase here as the only one I can think of is slightly rude and thinking about it is actually the finishing line to ‘up and down more times than a’]

Location – Very good.  If I could get out its within walking distance of the city centre with its wide range of shops, eating places and if the urge grabs you museums and other tourist attractions – like the yarn/fabric/craft shop nearby.

View – Well, whatcha think?

I think it’s pretty good and includes two cathedrals and on a clear day, like now but you also need a good camera, the Welsh Hills.  If there’s a really, really big boat on the River Mersey that can be seen too.  I have to admit without that point of reference I’m be hard pressed to correctly identify the river itself – I mean I can get close but certainly wouldn’t bet my life on it or even money for that matter.

Now that picture is quite deceptive because the glass is coated with a film which reduces glare and at this moment through the little gap of one of the open windows the sun is dazzling off Paddy’s Wigwam ie, the Catholic Cathedral – I think you should be able to pick that one out yourself – and to the left of the clock tower is the Anglican one.

Internet – Let’s not dwell on this.  I was so desperate the other day I even tried the one provided free and remembered why I don’t use it but my own has been so intermittent anyone close enough to hear me mutter would have been forgiven for thinking my mobile broadband provider was ‘For &*^£’s sake’.  However I may be discharged today so although our home one isn’t super fast, or super reliable come to that, it is somewhat better.

And then there are decisions to be made every day, some important, some not so important, some difficult, some not so difficult ie,

What to eat – Well in light of my comments on food above the hardest one in respect of eating anything off the menu is whether I want porridge or cereal for my breakfast.

What to wear – Obviously jim jams in some way, shape or form.  Although the tripper in the next bed who went home yesterday, on a similar basis to me today, we’re less likely to catch a bug at home, got dressed after her morning shower!!!!!!  It’s the first time I’ve encountered this personally and found it quite odd – basically because I don’t even need a weak reason to stay in my PJs and being on holiday is a really, really GOOD one.

However jim jams are not without their own complications.  Somehow by the time I’ve been in more than a week (sometimes sooner) I seem to have acquired a collection of items that aren’t necessarily the ones I wear most often at home (even though I’m pretty sure they’ve been washed) and items that don’t go together.  As we found out yesterday that I could probably go home today B just brought me one pair for today but last night (because I do change them before going to bed as well as after a shower) I ended up wearing a pair of red polka dot pants and pale denimy blue top!  I know not ideal but not too bad I mean I have stopped receiving actual T-shirts.  Ah yes I remember (not fondly) the purple check pants and pale green T-shirt ensemble.  Speaking of pants they are a whole other matter themselves.  We all, well I’m pretty sure all, have our own favourite (or worn more often) knickers or underpants and these quite often are not necessarily items you would want to be found wearing should you get knocked down by a bus.   On Tuesday I was due to have, and did, an intrathecal (into the spinal fluid) chemo injection and was selecting my garments to take into the shower in the morning when I realised that the knickers I’d picked although being peachy and complementing the jim jams nicely weren’t of a ‘hit by a bus calibre’.  This left me with a bit of a quandary – I did have other knickers to choose from and in the end plumbed for a pair that  though they practically guarantee an invisible panty line aren’t a pair I usually voluntarily wear for lounging but it was either those, which are extremely respectable both in style and condition, or a pair with smiling or surprised looking pineapples and lemons on them along with ‘Fruit Salad’ print – just in case you were unsure about the fruit.  And then I had the same dilemma yesterday when I had a bone marrow biopsy.  … sorry I just had to double check today’s as there’s another intrathecal injection later – it’s okay they are fine – I had indeed chosen appropriately.

Treatments – Now there isn’t a huge globbit of information available on treatment regimes for myeloma cerebrospinal fluid (CSF).  The figures say it happens in about 1% of cases but our consultant thinks that figure is on the high side or they would see more here.  Denise, very kindly, provided details of the chemotherapy drugs used there – currently thiotepa and previously depocyte and after that my injections are methotrexate!  It’s basically because we’ve gone for chemotherapy and radiotherapy but let me explain – last Friday our consultant was thinking depocyte and then we said thiotepa which is a drug he has heard of but never used personally.  Then on Monday when I saw the oncologist over radiotherapy, just on my arm I thought, she discussed radiotherapy on my skull and spinal cord too if I wanted a more effective treatment.  Our doctor had looked at this option over the weekend and found studies on 100 patients which showed it in a quite positive light.  However he said that with this complication he would never come across the ideal clinical data whereby 50% of patients were given one treatment, say radiotherapy, and 50% another, say chemotherapy as the numbers of patients just didn’t exist – or I thought ‘not at the same time’!  He was going to review the information the oncologist would provide later on Monday and let us know his thoughts – which were that the radiotherapy looked at good option but along with chemotherapy.  However I couldn’t have both at the same time – the oncologist had said to me that would be too toxic.  The need to get some injections in before starting the radiotherapy influenced the choice of medication.  The oncologist advised against depocyte as it remained in the system too long – one of the things the consultant liked as it would mean less injections, thiotepa although still being looked at and certainly not ruled out, was not readily available and indeed, if I remember rightly, not in the hospital, plus with not being familiar territory was a bit of an unknown with regard to side effects – particularly with having it before another type of treatment too,  and so methotrexate was picked.  It was here, I could have the first one on Tuesday, and it was reasonably familiar – not to me like I’d never heard of it, mind I’d never heard of depocyte or thiotepa Denise told me about them last week.

Speaking of Denise, if you’ve not seen it you need to go look at her comment on ‘B didn’t waste time’ from earlier this week – 22 May.  B was left unsupervised, by me that is, in Day Care on Wednesday as he waited for me to get back from Clatterbridge and collared the passing pharmacist to ask about thiotepa, a supplement very kindly given to me by Janice (as the doc wanted to ensure it wouldn’t cause an issue with either any meds or my kidneys) and pigeons.  I said to the doctor yesterday that if B happened upon him in the corridor he shouldn’t be surprised to find he was being asked about pigeons too.  I explained why and he laughed and replied ‘I think we can safely say I’m not going to find a research paper on that’.

B didn’t waste any time!

After a meeting with one of our consultants, the myeloma nurse, the second ward sister present, refeering I think, me, B, and as circumstances turned out, Auntie Ann and friend Chris T not G, I got home leave until Sunday night.  Let me tell you I was glad to get back for a rest – I have no idea where the weekend went.  I didn’t even have time to get dressed Sunday.  I mean yes, some days I just choose (cba*) not to get dressed, but Sunday I fully intended on putting outside clothes on but it just didn’t pan out and yet I didn’t seem to get that much done.

Anyhoo back to Friday and my return to my usual place of residence.  After him appearing all upset about the current situation I arrived home to find that B had already allowed another bird to move in!  AND if that wasn’t enough Bud was obviously fond of her too.  Okay Bud didn’t actually say so but the fact that he hadn’t tried to eat her speaks volumes.  Here’s the floozy showing off her ass…

I mean I am just basing Bud’s fondness on the fact that he hasn’t invited her to dine with him with her being the main course at least.  I for my part at welcoming her to the family provided access to the greenhouse in case she wanted a dry sheltered spot.

Before

After

B bought some bird seed when he shopped on Saturday and I liberally applied it round the garden included into the green house. Now although I never saw Pigina venture in there herself, the friend that brought me back in to The Royal last night saw her wander in there for some seed. She actually spent Saturday night perched on an upright paving slab near the shed – Pigina that is not Chris G.

Chris thinks Pigina might be at risk of getting eaten by a bird and indeed that’s how she comes to be staying with us in the first place. I however an of the opinion that she flew into the window. I am basing this on the greasy looking pigeon size splatt on the back bedroom window…

It’s about central – you might have to tilt your head at an angle.

Now I have really no idea where the time went at weekend. I had BIG plans and yet didn’t seem to get much done. What I did manage was to finish a Myeloma Buddy I started on Friday.

Gingerbread Buddy

One of the other things I did was a bit of tidying up, now bearing in mind that B tends to let stuff pile up on the dining table while I’m away – heck he attempts to let it build up when I’m at home.

The flowers were kindly given by a neighbour over a week ago – they appear to have kept well!

And look at this item of unsolicited unaddressed post we received…

So where are we with regard to the myeloma well, as a nurse said when she was asking me what the consultant said this afternoon, ‘so really everything is still up in the air’ and basically it is.  I saw an oncologist this morning regarding radiotherapy on my arm, as I thought, but she also mentioned it for treating the myeloma in the spinal fluid.  Chemotherapy injections into the spinal fluid would have to be put on hold whilst the radiotherapy was taking place as the combination would be too toxic.  The doc suggested radiotherapy to either my skull or my skull and spinal cord, I opted for the latter however do not have to make a final decision until later in the week.  There could possibly be one injection before and then they could be recommenced after.  I’ve opted to get a bone marrow biopsy done tomorrow, well I guess that would be today now, Tuesday anyway.

Anyhoo let’s just cut to some good news. Yes we do have some!  I asked about starting overnight peritoneal dialysis today and the PD nurse came for a chat.  Following on from a conversation he’d had earlier with the renal consultant when she came to see me it turned out that they thought the frequency of the PD could be reduced, either by doing it times a day for seven days a week or four times a day but for less days.  I’ve opted for four times a day Monday, Wednesday and Friday with nothing on the others other than draining the overnight fluid off.  I asked B for his opinion when he came in and he, after initially stating that it was up to me, said that Tuesday, Thursday and Saturday would be more practical – and he is of right of course.

I got swabbed today as I’ve been a bit snotty, yesterday and this morning, and may not have thought anything of it but for another couple of patients coughing last week.  I was told it was nothing that should concern me but we’ll see.

The internet is a wonder thing when it works right – I won’t say how many times I tried to post this last night but it wouldn’t play ball.  Hence me sitting here now having my breakfast in my usual half asleep daze thinking ‘Oh yeah I couldn’t keep my eyes open so I left it!’

I really didn’t mean to go on this much and really just wanted to let you know I was still here and actually feeling pretty good.  I did mean to share this last thing however.  I learned something today.  I learned it as I went for a wee just as B arrived back with my singapore chow mein from across the way.  I whizzed (get it whizzed) to the toilet and in my haste to get to the grub was in ‘wee position’ before I took full account of my surroundings.  In fact I was mid wee.  What I learnt was that if you are mid wee and notice something unpalatable on the floor at the side of the toilet then the natural reaction to flinch away from ‘the something’ kicks in before the reaction to ‘stop weeing’!!!!!!!  Fortunately I had plenty of jim jam bottoms.

*  cba – can’t be a&sed

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!

Tightening your tush!

My back pain and I reached an amicable understanding recently. I’d give it copious amounts of paracetamol and Tramadol along with not doing anything to knowingly upset it and it would, for quite large areas of time, generally leave me alone. Of course spending nearly two weeks on holiday in the Royal made it easier for me to uphold my side of the bargain as there’s not really much I can get up to in hospital that would cause it to complain – as long as I take the painkillers that is. I tried to reduce them during my stay in February and ended up aching.

Its surprising how quickly you can get use to being ‘comfortable’ and how quickly you take it for granted and how you only realise this when you do something to contravene the peace treaty and give the back pain cause to complain. In this particular instance I did something that I didn’t even consider would result in a protest – I decided I wanted a tighter tush.

When I wash my hands before doing the peritoneal dialysis (PD) fluid exchange I need to count to 10 or 20 while doing various things. On Saturday I thought I could take advantage of this to do some leg raises or even squats (the leg raises won out). Its not like they result in a big movement – standing on one leg and lifting the other backwards and doing the same thing with the leg bent – but do allegedly result in a shapely behind. I figured three or four times a day and in no time I’d have a behind that I’d be quite happy to have out in front.  Yet this little bit of leg lifting has upset my back pain and I may have made it a tad worse yesterday when I decided that my sewing room needed to look more like a sewing room again than a PD room.

When the initial supplies arrived I stored away from sight as much as was convenient. I realised it wouldn’t be practical to hide absolutely everything and couldn’t decide what to do with the bags of fluid. I tried putting them in one of the plastic ‘drawers’ but it turned out that Arnold Schwarzenegger would have had trouble getting it out, so I thought I’d see how it went with them. By Sunday this is how it was going…

I felt I needed to tidy it up. So following a slight rearrangement of the wardrobe in that room to make space for a box of fluid it looked like this…

Better – well I think so. Now I just need to have a proper sort out of the wardrobe and the rest of the stuff stored in the room probably as I didn’t so much find a space to put one of the boxes in as make a space by moving other stuff around ie, bunging it in the glory-hole and find some sort of attractive receptacle to put my BRIGHT YELLOW waste bag in.

So after this little bit of tidying yesterday and getting tea (I mean cooking spaghetti and warming up some pre-made frozen sauce) I felt like a nap but broke one of my cardinal rules – if you feel like a sleep have one – or you’ll feel worse later. As a result of no kipping I felt quite tired today. I mean I know that I tire easily at the minute but still I didn’t take a little nappy-poo – the next PD exchange was due in half an hour so after that I thought, then B went to work and Bud wouldn’t settle possibly after having B off last week so I entertained him, a friend phoned and it was time to do another exchange before bed.

It was so nice having B at home last week so much so that when he was going to work tonight I suggested he should take his redundancy and stay home with me or rather us. The first week I was in the Royal B’s company announced that the depot would be closing by the end of the year and three smaller transit depots would be opened – at least one being closer to home – and there may be jobs available at an existing warehouse the other side of Manchester. I’d originally told B that in my opinion he should hang in there and see if he got a job in Liverpool or Warrington and if he didn’t like it he could always take his redundancy at that point.

Tea time today I read a text from an Armchair Yoga friend about a couple who are part of the group.  Mrs found out last Wednesday that her cancer was now really serious and she had a matter of months and on Thursday Mr went and had a massive heart attack and died. Seriously – WTF!

So where I’d gone from telling B to stay at work, and not just for the money but also because I think its probably good for him to mix with people where the topic of conversation doesn’t at some point touch on myeloma or dialysis, this news made me want to be totally selfish and just spend more relaxed time together.  He responded that I should be careful what I suggested as he might just do that.

Mind you that might pan out quite well since despite not having actually worked in over 12 months I am still technically employed however I received a letter last week saying that the typists were being absorbed into other areas of the business.  As I wasn’t in on the telephone conference and haven’t received anything more personal than this letter from HR I don’t know where exactly this puts me. Although this might explain why I received a form from work a few weeks ago requesting my permission for them to obtain a medical report even though it said they usually asked for one after five months.

I’m not getting dressed

B called back a decorator/builder this morning and he’s calling out any time now to give us a quote for some work and I’ve decided I’m not getting dressed.  I’d thought about getting out of my jim jams this morning and decided that since I have to go for blood counts tomorrow and will have to get dressed for that I’d stay in my pyjamas today.  Indeed just like yesterday although I’ll have you know I did change my jim jams when I had a shower last night.

Needless to say I was made it back from my holiday on Friday.  One of the renal docs called in to see me and when he confirmed that I was indeed being discharged said ‘Your counts are low.’  ‘I know’ I responded.  What I nearly said was ‘Well that’s haematology for you.  If you can hobble out on your own off you go regardless of what your counts are as they’re desperate for beds’ but I decided I didn’t know him well enough or rather he didn’t know me well enough and may have thought I was being serious.  

I think Bud was happy to see me, I was certainly happy to see him.  Although I had forgotten what it was like waking up with the small furry family member wedged against my legs.

Generally I feel okay – tired but otherwise quite good but as the pharmacist said on Friday it will be next week when my counts bottom out that I’ll feel ropy.  The skin on the back of my hands is doing a really good impression of alligator hide and my stomach skin has decided to respond with quite an extreme redness to any kind of sticky tape applied.  Last night I’m sure a layer of skin came off when I removed the tape holding my peritoneal canula.

Speaking of last night, there I was straightening the quilt on the settee and may have been huffing and puffing a little, and my silver tongued husband came in and said ‘I miss the old Paula’. 

B went shopping yesterday and I said that I’d make lasagna but he told me to have a rest and he’d buy some instead so that’s what we had for tea yesterday.  Today however we’re having cottage pie – homemade cottage pie.  B is making it.  He’s already put the dishwasher on with the meagre amount of dishes used so far today in preparation for ‘making the cottage pie’.  I’ve told him ‘It’s just cottage pie, not a seven course gourmet meal’ – I may have to eat my words – literally if the cottage pie sucks. 

 

Is it me?

I was upstairs when B shouted me.

B:  ‘Can you come here for a minute?’

Me:  ‘I’ve got no pants on.  I was going to have a shower.’ – Look, I still say shower since it does involve the shower but it is more of a hose down at present

B:  ‘Well can you put some on and come down.’

Thinking he wanted to show me something outside that would disappear unless I saw it at that exact moment and trusting it didn’t involve a neighbour standing in the kitchen I wandered downstairs without my trousers on – I had my knickers on and my cardigan was quite long.

I arrived in the kitchen to find B with a stern expression on his face and his arms folded across his chest.

B:  ‘Look at this.  I opened the box and the first three were like this…’

B:  ‘I haven’t got the receipt but it says Wilko on the box.  They were only £1.59 (ish) but I feel like taking them back.  They open on Sundays.’

Now I think he both expected and wanted me to say ‘It’s not really worth the hassle is it’ but considering I’d had to come downstairs and was standing trouser-less, but socked,  in the kitchen I said

‘Yes, but its the principle.  I think you should take them back.’

Hiccy Burpy to me

Hiccy Burpy was on a card I got a friend years and years ago – it featured drunken frogs.  It really amused me.  B says it doesn’t take much but I found this particularly amusing.

Its been a lovely bright sunny day

(photo does not do it justice)

B and I went to a friends for tea yesterday where I got a cake with four candles in it and a rousing rendition of Happy Birthday by a quartet – minus the one member of the house who’s actually in a choir.

We discussed going out for tea ie, I suggested we go to the one pub within walking distance, take Bud and sit outside – B thought this idea sucked as it was so nice we wouldn’t get a seat outside so we decided on an Indian takeaway, after neighbours and eldest nephew suggested newish Indian restaurant we decided on this, we didn’t know opening times, they weren’t open when I phoned, B and Bud got back from their walk and I suggested we call on the way back from dialysis tomorrow and have an Indian takeaway tonight!

Bud got to have the chicken tikka but everyone declined the salad

Here’s some other pics…

 

Yoga Frog – The Tree

After an inquisitive visit from the small furry family member…

it was a fallen tree – making him jump.  Bud did like the box too

‘I just caught it, it was trying to escape’

I felt bad taking a chunk out of Tatty Ted but he tasted yummy

Wonder whose legs those are

These were off Bud.  I tapped B on the arm nine times and asked if that was how Bud has requested them.  B looked at me quizzically – ‘Nine times.  After eight.’  Not as funny as I thought apparently.

New shawl, PJ bottoms and socks

Look I’ve got five o’clock shadow – not to worry we’ll get rid of that next DT-PACE

‘What are you doing?’

‘Come here my pretty’

 

‘Hey! That’s my behind – get your own.’

‘I’m not very happy about this – you know I don’t pose’

My sister in law is improving her crochet skills daily – like this tag.  It’s really funny/strange watching her crochet left handed.

Sheep – the source of hours of pleasure and not just for the Welsh

On Friday when Prof realised it was my birthday today he said ‘Well done’ and I nearly piped up ‘What for getting to another one?’ but although I’ve been taking the Thalidomide earlier (7.30pm to 8.00 pm) and this has made me perkier earlier in the day, I still need a bit of a run up to get to smart a*se mode.

Then today when all three of us were sitting on the settee and I’d finished opening the presents and cards I had at the time I sat there and started getting teary – I did leak a little bit.  B asked me why I was crying, was it because of the cancer.  I said no.  He said ‘You wouldn’t be crying if you didn’t have myeloma.’   When I could trust myself to speak without bawling I said ‘I know no-one knows what will happen and lots of people don’t make their next birthday but I’m just so grateful that I did.’

Peritoneal Dialysis

After flitting round making sure the house was reasonably presentable for the PD* nurse she came in through the front door, stopped briefly in the hall/dining room and then we went through to the lounge. This was without venturing anywhere near the kitchen or upstairs at all. Mind you, you could guarantee that if I’d not put things away (like B’s socks which got me whinged at – as well as his car he’s precious about his socks, although pointing out that the ones I’d put away had gone onto piles of the same logo appeased him somewhat) she would have been checking under the bed and coming face to face with the extremely dusty barely used Pilates machine.

From what this nurse and the one from Thursday said this is what happens with PD –

a cannula is inserted into the peritoneal cavity – gulp! Cannula – sometimes irritating pointy thing that can make can make your toes curl that goes into the back of a hand or by the time those veins have been tired out somewhere in the forearm or crook of the elbow. But no, the similarity ends at the name it’s a very soft plastic tube with a coiled bit at the end (which is more effective at keeping it in place than a straight piece) with lots of irrigation holes in it and two fuzzy wooly bits that encourage tissue to heal round it – one sits in the abdominal muscle and the other just under the skin. At the end of the outside bit there’s a plastic end with a tap (vision of something like the tap on a beer barrel or box of wine) which twists to open the line and has a screw cap on the end which covers a bit you DON’T TOUCH. The end can be secured when not in use round the back or tucked into a bra – well if you’re female or would it be more politically correct to say ‘well if you wear one’

the peritoneal cavity is then filled with fluid. This fluid then through a process of osmosis (a word I learned from the list of 100 questions our school chemistry teacher, I think he may have been a professor, had the class learn and randomly tested us on) is able to filter toxins

the fluid can be removed manually four times a day or the process can be done overnight by machine. If it’s done manually about two litres of fluid sit in the abdomen all the time and are swapped for fresh after getting up, before going to bed and twice in between at four to six hour intervals. Needless to say I said I’d prefer the overnight method as this would leave my days free but both methods are not exclusive and can be interchanged to suit. The machine is quite quiet but does bother some people – so I think that means that Bud and I should be okay but you can bet it’s gonna bother B

PD is gentler than HD in that because it removes toxins every day there is no build up between dialysing. Whereas HD produces a saw tooth effect ie, clear out, build up, clear out, build up, clear out, build up, build up

one of the big factors is that PD can preserve any existing kidney function whereas because HD is so efficient at what it does the kidneys kinda go ‘well we don’t need to do anything’ and stop trying. So now would be a good time for me to move over while mine are still doing something toxin wise and of course I’m back to weeing again – goodness knows although I think I’d deal better with a fluid restriction this time I wouldn’t necessarily like it

another big factor would be a renal diet doesn’t have to be adhered to however I don’t follow one at the moment anyway – not because I’m being naughty but because I don’t need to as the relevant levels such as phosphate and potassium aren’t high

I’ll have to share the rest tomorrow as Bud’s had an upset tummy today and has been indicating that it needs rubbing and it’s a bit difficult to rub with one hand and type with the other. Bud’s tummy has been a bit temperamental since he joined the family, indeed I recall him eating grass the day after he came home, and we have mentioned it to the vet. Usually once he’s ‘been’ it settles down but not today. Indeed when B went to work we did our usual routine of giving him a kiss and a hug on the kitchen door step – well I kiss and hug him and Bud stands at the side of me waiting for his cu-tch (little tickle) and then we stand at the porch window and wave as he drives off to earn us some some pennies but not tonight. We both left the kitchen but I arrived at the window and Bud went and got back on the settee where he’s stayed since. But where he would usually settle and only shift occasionally he keeps moving round like he’s not completely satisfied – I may think this is happening more than it is but he definitely keeps raising his head and looking not too happy and looking round if I stop rubbing.  He even turned down some rump steak at tea time although did wag his tail when initially offered it and the second and third time too kinda ‘I appreciate it but no thanks not right now’.

* PD – that would be how us in the know refer to peritoneal dialsysis, HD being haemodialysis. I personally have been in the know since Friday afternoon when I found myself using the terms during a conversation with B, prior to that everything was just dialysis.

Ripply Fish?!?!

My Creative Space this week was supposed to comprise a cardigan I’d knit for myself however it didn’t make it for two reasons

1)  I intended to model it myself but B was going to work by the time I finished it

2)  When I popped it onto my dress form to photograph it became blatantly apparent that it desperately needed blocking.  I have to admit it had been a little apparent before that but I thought that with the aid of a few strategically placed pins I could get away with it but that would be – NO

So the cardy is currently enjoying (hopefully) a wool cycle in the washing machine and instead we have the latest pram/cot (crib) blanket I’ve been asked to do…

It is again from Comfort Knitting and Crochet Afghans, is called Fish Ripple Pattern and is in a double knitting yarn.  The grandmother to be choose the colours which will  show up better when I take a pic in daylight.

I meanwhile had about three hours sleep again last night before today’s dialysis so I am expecting to sleep well tonight especially since B has accused me of overdoing it today – but we’ve a nurse coming out tomorrow to check out the house’s suitability for carrying out peritoneal dialysis (it was only arranged today) and B’s ‘It looks alright’ wasn’t satisfying me.  I mean okay I could just have stuffed the card making stuff back in the cupboard without finishing off my sis-in-law’s card and the paper bin under the desk possibly didn’t need emptying but the soil in the porch from a wayward plant really did need brushing up and whilst I was at it I might as well sort out the covers on the settee’s again, wipe down the kitchen worktops and get the bubble wrap out of the glory-hole while I was at it.  B took the cloth and vinegar spray off me before I had chance to clean the porch window (or rather Bud’s nose marks off the window) and did it instead.

However dialysis this way at home could cut out the problem of lack of sleep on the evening before dialysis mind you since it can be done during the night it could also keep me awake all night!  I’m now off to check on my washed cardigan there could be tears if it ends up like the tea cosy and then I’m off to bed where Bud’s already had an early night!

Other Creative Spaces can be found here.