Monthly Archives: November 2011

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.

Catching up

Wednesday 2 November – Saw Prof, got two units of blood donated by a wonderful stranger.  (This seems like it was about two months ago rather than just over two weeks.)

Thursday 3 November – Can’t remember exactly (at all) which must mean I did something so wild I’ve had to erase it from my memory OR I spent the day knitting and taking it easy following a long day on the Wednesday and possibly threw in a walk with Bud.

Friday 4 November – Charged full of wonderful stranger’s even more wonderful haemoglobin I had by 10.00 am cleaned down and painted the tops of three radiator cabinets, touched up the bottom of the lounge door and nearby skirting board and painted the banister handrail and newel post finials.  Now I realised as I was regaling my Auntie Ann later in the day with my escapades that this wasn’t actually that much and that the ‘old Paula’, to quote B, would have had a room emulsioned in a morning but I thought it was quite an accomplishment and my back certainly paid attention – it needed a sit down and an extra painkiller then and later.

In the afternoon we went to Auntie Ann’s but on the way stopped off to purchase a fridge freezer and a tumble dryer (because the old ones had only been bust for six and 12 months plus), and I was so decisive.  When we’d been a few weeks before I’d been all foot draggingly enthusiastic ‘Yeah, it’s a fridge, yep that’s one too, oh a black one!  I don’t want black.’

And I managed to persuade B that the ideal thing for tea was a Chinese takeaway.  He was reluctant as we’re, well technically I’m supposed to be sticking to a borderline neturopenic diet to rule out a potential stomach bug as opposed to a side effect of Revlimid but it was over a week since I’d had Revlimid.  B was more reluctant as he didn’t think I’d eat much but I stuffed it down and he had to fight for his share. Mmmmmmmmm!

Saturday 5 November – We were both up bright and early for once and went to town shopping.  We then had a walk with our small furry family member and went to a BBQ and fireworks display at our neighbour’s in the evening.  (Just in case you’re wondering we celebrate the 5th of November as Bonfire Night to commemorate Guy Fawkes’s attempt to blow up parliament.)  My back requested extra painkillers as I made it stand up in the cold and it was still getting over Friday.

Sunday 6 November – The fridge freezer and tumble dryer were being delivered some time between 10.34 am and 2.34 pm (and I think I’m precise with times).  B was going to get up at 9.00 am to empty the fridge.  However by the time he got up I’d cleared out the fridge, had a crochet, an extra painkiller – what a surprise, a sit down and then cleared out the freezer.

B then got up and moved the old fridge and cleaned the floor underneath – no photo is available as it may very well have been considered age restricted.  Whilst the fridge was moved Bud gave it the once over…

‘Ahh yeah mate.  I see the problem…’

‘it’s not plugged in!’

The new items arrived…

I got the privilege of reading the instruction booklet so I could tell B how it worked as the old one had about three buttons – hot, cool and go.

As you can see, although the fridge is stable, it needs a bit of attention to make it straight – B is in no rush so I think that might be the New Year and since I want the door reversed too and it includes just 32 easy steps I’m thinking that might be 2013!

I have to admit I may very well have attempted the door myself while B did this in the afternoon…

but I had a ballet to go to in the evening – just to watch, it was good blood but not that good!  Vienna Festival Ballet in The Nutcracker.  My favourite so far – okay fair enough I’ve only seen three but I liked this for the humorous bits – by which I mean there were funny bits in the ballet as opposed to just trying not to snigger when the male dancers  bound on in tight white tights – I mean really there was no doubt the Nutcracker could have cracked nuts!

And then Chris and I got another takeaway on the way home and it was almost equally as yummy as Friday’s.  Oh, and I needed an extra painkiller to cope with the theatre seat (this does become relevant later).

Tomorrow we’ll find out how much else I got done until I ran out of juice!

Oh and it was our wedding anniversary yesterday so although there’s no prize – other than a sense of smugness if you get it right – feel free to guess how many years we’ve been happily married!  Okay I guess that could differ between B and I so we’ll just go with how many years we’ve been married! ;D

Some Dayz – by Buddy

Thursday

P knows that I’m partial to a little taste of yoghurt so on Thursday morning, after her Uncle Ray had dropped her back at home after going to the Royal for blood tests for the appointment on Friday, she was thoughtful enough to collect a cereal bowl from the kitchen for my share.

We exited the kitchen in the ‘Budmobile’ with P driving via the cereal bowl.  I was in the passenger seat on the right so we had to pretend we were in the US but once we’d got past the dining table P was driving with one hand as she’d picked her knitting in the other. So I switched sides ‘cos she’s used to driving on the left and we were transported back to the UK briefly because P remembered the Ice Road Truckers: Deadliest Roads programme she’d seen recently and they drive on the left.  So we popped over to India.  With all the beeping, from the horn and the expletive covering bleep machine, swerving and dodgy manoeuvre around the lounge door is was the most fur raising two metres (six and a half feet) of my little doggy life.

Fortunately the yoghurt was worth it even though I had to work round the whole grain bits in it.

Saturday

P got a spiky temp and spent most of the afternoon on the settee asleep.  We did however get our 7.00 pm tea at 8:15 pm ish.  And then guess what, she slept some more.

Sunday

Yet again P was spiky and there was more sleeping.  P got up just before 8.00 am and took to the settee.  I’ll give her this though when I got up about half an hour later she did get up and open the back door so I could go wee wee.  Since I’ve mentioned going wee wee I would like to point out that saying ‘D’you wanna go wee wee’ in an Aussie accent doesn’t make it sound like I’m going for a barbie on the beach when it’s raining, freezing or dark out.  Oh, and saying ‘It’s wee wee time with Buddy Kilgallon’ can give a little doggy a complex.  I mean it’s not a spectator sport!

Now although P did get up for my toiletry needs when I hinted that I’d like my salmon and kibble breakfast I got two Markies and a Peteromi.

Now I was a little concerned when B and I got back from our walk as P still had The X Factor on the TV despite the Sky controls being within reach.  I was relieved though when I realised that P had slept through most of it.

Oh, oh and before I go for a little nap myself and since Julie asked – this is a Rodeo…

And to pre-empt another question this is a Markie…

P says we can’t have a Peteromi photo as I won’t be able to let her put it back in the cupboard!  I so need to learn how to open the treat cupboard door and use the camera.

The Great Slipper Hunt of 2011

I was hoping to be able to show you a finished shawl today but after I missed yesterday’s knitting target dramatically I took a picture today while there was still a fair amount of natural light left and abandoned any thoughts of getting to the point of weaving ends in this evening.

I ended up having to do another West knits Knitalong shawl after a friend saw the first one and said ‘I’ll have one of these for Christmas in white, grey and black if you can manage it.  It will be ideal rather than a cardy.’ To which I responded ‘Okay then.’ While thinking ‘DOH!’  You see said friend hardly ever asks me to knit, sew, crochet anything even though I’ve offered loads of times – thinking about it maybe she just doesn’t trust my crafting skills – I think things she’s asked for, rather than just had thrust upon her amount to a fabric pelmet and a throw.  The DOH! resulted from me having already bought her present.  A couple of months ago she accompanied me to a hospital appointment and then we did a spot of shopping in Liverpool and then, of course, went for food.  During the course of the shopping she spotted a handbag she really liked and I was able to buy it a few days later from the local version of the same shop.  ‘What a result’ I thought at the time – with the starting of a sense of smugness at getting ahead with Christmas presents.  Anyhoo needless to say I couldn’t/didn’t say no and bought the yarn last Saturday.

As I avoid circular needles at all costs I am, once again, knitting this one on straight needles so it’s not exactly photogenic.  Actually it’s not clear in the flesh, so to speak, two friends called round last night and one isn’t a knitter at all and couldn’t grasp how what went where at all – so I had to get the first one to explain it.  I also brought down Pyjama Bear which shows I’m feeling better than two weeks ago when I mentioned the bear but couldn’t muster the enthusiasm to go upstairs for it.

So here it is…

I didn’t meet my knitting target yesterday as we had a Buddy incident.  There I was all set to carry on with the shawl after getting a drink and getting myself comfy on the settee just after two o’clock and by half past I was putting the quilt off the settee in the washer along with Bud’s two duvet/mat covers – because I thought I might as well make the most of the wash.  This was because Bud had been out for a wee wee and come back in with a pooey paw, only slightly pooey right enough but still pooey!  And I made Bud flinch, I was shooing him out into the garage and he went onto his window mat as he thought he’d been naughty.  As he wasn’t moving quick enough I put my hand out to pull him towards me and as it passed over his head he ducked and I ended up feeling bad.  Then I thoroughly traumatised Bud by inspecting his paws and then washing the relevant one with large quantities of Dettol, copious amounts of kitchen roll and a huge, nay HUGE use of ‘It’s alright.   You’re a good boy.’  He got a doggy treat after it and I got a nap.

I wouldn’t mind but B did a poo sweep of the garden last Saturday as we got back from Auntie Ann’s on Friday to find one of B’s garage slippers was missing.  After a search of the garage and house we could only conclude it was in the garden and Bud was being no help, he refused to answer B’s question ‘Where’s my slipper?  What have you done with it?’  On Saturday I ventured out on a slipper hunt to find it was poo central in the garden.  B not having collected anything since I initially went into hospital in September, he was waiting for a frosty morning but the weather has been unseasonably mild.  So B ended up having to don a pair of latex gloves and go on a poo hunt.  What made it hilarious, er I mean worse was that it was frosty early on Sunday morning!  Hehe.

Other creative spaces can be found here.

Buddy the Yoga Dog!

I cannot believe I haven’t blogged for four days in a row.  I mean it’s not like I have a valid excuse – I’ve felt well.  In fact that’s been the problem.  I’ve felt so well I’ve done stuff that resulted in needing a sleep due to over exertion and a liberal increase in the consumption of codeine – basically double what I usually take.

You may (or may not) recall that our Tuesday afternoon Armchair Yoga Group at the local oncology centre got evicted from the room that’s been used for the past couple of years.  This was due to a new programme starting, the need of the room for chemotherapy in the future or just because… because we got conflicting information on this point.  Anyhoo we weren’t to be put off yoga-ing because it means a lot to all of us that attend.  Some of us would lunch and natter beforehand and some would attend just for the yoga.  Now it wasn’t officially identified as Armchair Yoga but basically since not many of us, other than the teacher, could even contemplate getting their legs behind their heads (or in my case not any more) and we sit in a chair to do it – Armchair Yoga seems appropriate.

It involves Piranha, no that’s not it, Panorama, oh bum, don’t tell the teacher, wait I’ve got it, it’s Pranayama which is breathing – of course that’s always a good thing, but this is breath control.  I have to say I used it when I had my Hickman line fitted, my PICC line and during my recent MRI.

Anyhoo other members of the group have been looking at new venues, and indeed may have found one, but in the meantime we’re rendezvousing in our lounge, not as an official yoga group just as a bunch of friends meeting up to wiggle things about in front of each other!

Therefore since Friday the house is possibly the cleanest it’s been since, urm, well {hanging head in shame} months.  B offered to give the hob the once over before he went to bed this morning, there was a bit of pancake batter that had missed the pan on Saturday lurking on it, and he was surprised when I said ‘Okay.’  Alright I did then say ‘It’s alright I’ll do it later’ but since he keeps telling me to take it easy he had to do it.  But I’ve had a whale of a time doing other stuff – which I’ll tell you about tomorrow if I remember.

So this afternoon our first yoga-ist arrived and was met by our official welcoming committee ie, Bud.  He wagged, he picked up and ran round, still wagging, with his raw hide bone,, he licked and then he did the leg press thing – when he wants fussing he leans his little furry body against your legs generally when you’re seated while you attend to his tickling requirements.  And then more and more people turned up and he was spoiled for choice and so excited – we’d reached full stiff legged, arched back waggy mode by this time.

Once we were all seated, there were eight of us, I moved his mat so it was between me and the next yoga-ite (what do you call someone who does yoga – if you jog you’re a jogger so maybe yogar) and as she said it looked like he had his own place in the circle.  Bud settled down with his chew and then nodded off whilst the potential new accommodation was discussed and then we started with the exercises.

We interlaced our fingers with our arms out in front and raised them over our heads and Bud’s head snapped up as he surveyed the goings on with a perplexed look on his face.  He then got up, did a quick round of the room and came back to me but wouldn’t settle.  I got him a treat and he lay down to eat it but then got up again and put the front half of his body on the settee and just stood there.  I scooched over, Bud jumped up next to me, like right next to me and settled down.  And he was quite happy to stay there until we did a standing stretch which caused a little looky at what exactly was happening this time.  But he was such a good boy (because he is, he is a good boy) and in fact someone said he I didn’t know where he lived he’d kidnap him – Bud at this point was snuggling with him.

We get to do it again next week and it’s just dawned on me if I can stretch it out until Christmas I won’t be having to do any pre-Christmas panic cleaning as B will have really kept on top of it!  YAY!!!!!

A Non Bare Bear

Darn, as Ernie pointed out I missed a prime opportunity in the title of my previous post when I could have gone with a play on a Bare Bear!  Anyhoo said bear is now fully clothed – well nearly.  Although he looks fully attired his goggles need a press stud and are just tied on and his little jacket needs an open ended zip/zipper.

Oh, and his jodphurs require a bit of white shirring elastic but other than thathe’s fully dressed!  The pattern is again from Teddy Bears: More Than 25 Irresistible Designs for Knitted Bears by Debbie Bliss.

As you can clearly see I got the loopy knitting finished whilst at the hospital yesterday.  I did have to adjust the pattern as keeping to the instructions was only sending me loopy not the yarn.  In fact I also managed to reknit the goggles as the first pair were 12cm/4.76″ short.  And then I ran out of knitting, seriously I had nothing left to do, no book to read, I did write out my Christmas present list again, got about five cups of water (they are very small cups) and went for a wee – which was a feat in itself let me tell you due completely to my choice of attire – and then fortunately my Auntie Ann appeared – but back to my clothing.  

When we have an appointment with a doctor/prof at the clinic I make at least half an effort (although they may disagree) due to the fact that, as you may recall, we go into Liverpool for a meal but when I go to the Day Unit, for treatment or when I’m feeling ruff, I go casual to the point of completely un-ironed in some instances.  So yesterday morning I was all of a do-da – an appointment with the Prof but in the Day Unit – what to wear? Anyhoo, the decision was made for me – I ironed a pair of trousers only to find I didn’t have a suitable clean t-shirt so I ended up wearing a dress with tights.  I also ended up getting two units of blood and let me tell you, if you don’t already know, it is quite a performance dealing with tights while you have a cannula in the back of one of your hands – but I’m getting ahead of myself.

I got there at 10.50am for my 11 o’clock appointment – I was early as B wasn’t involved, my Uncle Ray provided transportation.  I saw the Prof and he asked me how I was.  I said I didn’t feel ill but had been tired – and he said yes I would be because I was anemic.  So I got to have two units of blood – I could have gone back today but whilst I was already there I said I might as well stay plus if I did I’d feel better sooner.

Due to my haemoglobin count (7.6 – normal min for women 11.8), white blood count (2.6 – min 3.5) and neutrophils (1.00 – min 2.0) the next cycle of Revlimid has been delayed.  I go back to the clinic a week tomorrow (11 November) and will, hopefully, start cycle two then but this may be reduced to 10mg every other day or 5mg a day.  On the upside my kidney function has improved again and my PP (I think rather than my IgA – you’d think I’d know definitely wouldn’t you) has gone from 15 to 10! We’ll just need to wait until my next bone marrow biopsy to see if it affects (ie, squashes and stomps on) the plasma cell content of the bone marrow.

My appetite was better yesterday I’d managed half a sandwich for my lunch with a bag of french fries (which are a crisp/chip) and for tea I’d been craving spag bol (which is so much easier to type than spaghetti bolognese).  Due to the tiredness I fortunately hadn’t decided to make this from scratch so B had got a ready made jar to go with some mince. However subtle hints to B on the phone such as ‘Are you going to make the bolognese?’ hadn’t worked so I got home at 9.10pm (hence my Auntie Ann collecting me as B had gone to work) to find the meal still in kit form.  And you know what I did – I made it!

I’m not going to say it was without incident – I ended up with about a quarter of the spaghetti I started with due to a colander and sink incident – but I really enjoyed.

I’d done the mince and the sauce before going upstairs for a shower and realised we had a couple of phone messages.  So I had a quick shower, put the pasta on and phoned one of my friends back and had to do something I rarely do, I had to say I couldn’t stay on the phone long as I was cooking pasta.  When she called round this afternoon she said she got off the phone and said to herself ‘She’s been out nearly all day, she’s not been home long, it’s 10 o’clock at night, did she really just say she was cooking pasta?’ but apparently I looked and sounded a lot better today – totally like someone who could deal with cooking pasta at that time of night!

More creative spaces can be found here.