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. 

 

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!

 

Hexagoning and Needles

While I have a bit of time on my hands I decided it was about time I shared my finished hexagonal baby blanket.  I have been unable to knit today!  {Sharp intake of breath} Don’t panic – I feel fine but my knitting is feeling decidely soggy following an unfortunate encounter with some tea this morning so it’s still drying off from its little cleansing shower.  Yesterday I have to admit no knitting got done as I was really tired and in quite a bit of pain from my right shoulder which knitting aggravated – I’m waiting on the results of yesterday’s x-ray on it.

Anyhoo back to some knitting I finished a few weeks ago.  This is Swirl and yet again is from Comfort Knitting and Crochet Afghans.

In total it measures about 74 cm (29″) across and is in double knitting yarn on size 4 mm straight needles.

When I showed pics previously Fiona enquired as to how it was constructed here we go – please excuse a the quality of a couple of the photos – I took them on my phone and can confirm that its correctly called a phone with a camera and not a camera phone.

Now it should have been knit on four double pointed needles but as I’ve said I avoid these if at all possible so adapted the pattern to suit two.

I started with one hexagon and joined the seam on that to close it up.  Then I cast on 100 stitches and picked up another 20 along one side to join the second one on.

This carried on adding 20 stitches for additional side that the new hexagon needed to join on to ie, this one had four hexagons so had 80 stitches from hexagon sides and 40 new ones…

Each hexagon had a seam that needed joining because of being knit on just two needles.

And just once there was a seam to be sewn between hexagons when I didn’t pick up enough stitches…

I wasn’t particularly orderly about adding hexagons possibly because I didn’t have any green to start with.

but after filling in the irratic gaps it looked like this…

Yes its not quite flat, and not quite as noticeable in ‘real life’ but I don’t think knitting it on four needles would have made that much of a difference.

This again isn’t a pattern I would have chosen to knit or colours I would have necessarily used (the colours are similar to the ones in the book) but I am quite pleased with it and do think it would look great in really bright colours.

Other creative spaces can be found here.

I started the DT-PACE IV chemotherapy today – my switch to peritoneal dialysis (PD) caused a bit of delay will things were thunk about.  I said to the blook pharmacist this morning that I believed I was causing them a problem, he agreed and said I was really testing them.  The renal doctor called to see me again for the fourth time, however its the first time I was actually ‘in’.  Tuesday with not having anything scheduled I’d been allowed out and after a trip into Primark would have come back with clothing if I’d been able to remember my credit card pin.  The third time the doc called yesterday morning I was having a shower.  The only concern he had about the schedule was that it resulted in me restarting the PD at midnight when he thought surely nine would have been better.  As it is I only got hooked up at quarter to one so by the time the bags have run through its probably going to be three o’clock Saturday morning that I need to start up again.  As you may have gathered I am being allowed to do the PD during the treatment, rather than having to go down for the haemodialysis (HD).  He must have thought that I looked way too enthusiastic having to get up at 12 even to pop a bag of fluid in but bascially I’m just estatic that I don’t have to go back to HD – and can only think he doesn’t know what sort irrate hours and late nights this can entail for inpatients – like the time I went down at ten past midnight so got back to my bed at 4.20 am!

After getting back from my non-shopping spree on Tuesday B took me out for tea – fish and chips which I had to stop eating part way through as I felt sick and got chastised for not asking for an anti-sickness tablet – I forgot!  It didn’t help that he knew I’d been sick at lunch time at the tiniest taste of Pot Noodle.

Oh, and tomorrow I get to have a biopsy needle stuck in the bump on the back of my head as the x-ray report says my skull is fine – which is good since when I was diagnosed the x-ray showed a lorra, lorra lytic lesions.  I’m think I may have to come up with a convicing ‘Silly me I forgot but I do know remember bumping it’ – depending on the size of the needle!

I need a foot rest

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

This raises two points –

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

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

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

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

A Clinic and A Cloche

Now if you’d said ‘Why not make a cloche?’ to me before yesterday I would have said ‘What do I want with something for plants?  I’m in no condition for gardening’.  The only cloche I was familiar with was the kind that you stuck over tender plants to keep them happy and healthy.  Little did I know that it also relates to hats and indeed cloche refers to both the hatty and the planty varieties being bell-shaped.   You may be wondering what this has to do with our clinic appointment today, well let’s start at the beginning.

Yesterday I saw this adorable pattern, The Paiyton Cloche,

over at googie momma’s blog where she’d done a yarny round up.  I was smitten and it just what I needed – there’s also some really cute over patterns there to – I was also particularly taken with the crocheted necklace and the crocodile bootees.  However when I visited The Velvet Acorn it was sold!  I convo’ed them, it was re-listed and I bought one.

Last night when I was contemplating what knitting/crocheting to do on the way to/from and while at the clinic appointment today I thought I’d start the cloche as everything else was too big to be easily portable or too complex to chat round.

What prompted me to be looking for a toddler size hat (although it includes adult sizes in the pattern too) is that the neighbours who have been picking me up from dialysis for the past two weeks have a two year old great grand-daughter who visits quite a lot – she’s so cute and adorable herself.  Mrs Neighbour had asked for my opinion of what needles to use on a ball of wool that she’d bought in Spain (she actually brought it in when she visited me last time I on Royal-cation) as she intended to knit a toddler size hat.  I said 6mm and emailed her a link to a site that provides free patterns as I didn’t have any for aran weight hats.  She was telling me last week that she’d made one and had increased the 60 stitches instructed to 80 as it didn’t look sufficient and the hat had still turned out only big enough to fit a doll.  ‘I only had a pair of 9’s so I used them.  Would this make a difference?’  ‘If that’s the old Imperial size 9 then yes!’  (For the non-knitters a size 9 equals a metric 3.75 mm as opposed to the 6 mm that the pattern probably asked for so anything knit would turn out quite a bit smaller.)

I’m well impressed with both the pattern, which was easy to follow, and the resulting hat, I mean cloche.  It was super quick and super simple AND it turns out to be one of those items that follow this equation

minimal effort = fantastic result

I started it on the way to the clinic and finished it after I got home from my Indian Head Massage – I could have finished it sooner but I hadn’t even looked at the pattern so didn’t realise how easy it was and didn’t have a tape measure to hand so I guessed at 18″ and when I measured it when we got home it was actually 4″ too long.

What’d think?

As to the clinic appointment – we had to wait for a short time as my case notes hadn’t been sent down from the ward I had my PD line installed on – so we went for a cuppa and when we got back the Prof chased them up but when they still didn’t materialise he got to prove right his quip last time when he introduced us to the new doctor saying ‘I’ve seen Paula that much I don’t need the case notes’.

I’m getting another ‘week off’, which is just as well as B took a chance and booked next week off himself at the last minute hoping that I wouldn’t be on another Royal-cation, and I need to ring the ward on Monday 2 April to see if they have a bed for me then so we can start the third (and last) DT-PACE.

To prove that even Professors are human when I said that this suited us fine as B was off next week Prof said ‘Oh, that’s good.  Are you going away?’ to which I said ‘No’ but B said ‘It’s a bit hard with dialysis’.  Prof then accused himself of being thick (especially as he’d only just confirmed what days I went for dialysis) and B actually disagreed – allegedly Mrs Prof wouldn’t have.

Surprise Blood Clinic

I finally got two units of blood yesterday and felt fantastic before I went to bed last night but I’ve felt quite tired still today but am now feeling somewhat perkier – not just quite perky, perky, PERKY yet.

I had a surprise blood clinic appointment on Friday. I’d phoned up for one earlier in the week and it was booked for next Friday but we got a phone call on Thursday afternoon changing it to Friday just gone.

The appointment was 11.20 so we got there at about 12.10. Wait, there is a reason for this over and above just tardiness. Most people need a blood test before their appointment and this takes at least an hour to process so if you don’t need one you add an hour to your appointment time – or you end up at reception having a conversation about why you’ve had to wait an additional hour on top of any running late time – with me over hearing it. As it was we waited about three minutes. We’d barely had time to say ‘Hi’ to Sean before we were escorted in by the Prof to meet a new doctor who would then consult back with the Prof if he needed to. I seemed to have more questions than usual so when he got up to ask about the next step in treatment B suggested that he just ask the Prof to come back in whereas I’d have happily let him run to and fro!

The upshot was –

I get to have another dose of DT-PACE in about two weeks when my blood counts have recovered.

I mentioned that I’d had some side effects this time from the dexamethasone. The new doc obviously wasn’t familiar with my ‘JUST SAY NO’ approach to steroids and again I don’t think appreciated just how bad things had been in the past. I felt the need to say that if I’d been sat there two weeks ago and been told about having DT-PACE again I’d have probably been in tears. Prof when he came in said that they’d done their job but they didn’t want them to do any harm and the dose would be reviewed again.

I got two units of blood on Saturday as Prof said in view of my haemoglobin count I could do with some. I have to say I was a bit put out because there’s a note on my renal file to say that my haemoglobin should be kept above 8.0 and it had dropped to 7.9 presumably on a day I didn’t ask about the results (maybe I was too tired) and I didn’t get any the next time I went. So I could have been feeling better sooner. I phoned renal while waiting for my meds in the pharmacy and was told that would be okay but when I got there on Saturday morning I had to go through it again and at one point it was tabled that we could see what my result was before getting it ordered. I must have used the word ‘Prof’ as every other word in an attempt to by-pass this and just get the blood which was just as well as it turned out to be 8.8 so there was no way I would have got any. I then had to say this again later. As it was the lab had to do the cross match manually so in order to get both units dialysis had to be extended by 40 minutes. The sister on the dialysis unit on Saturday also said I’d be in an isolation room this coming week as my neutrophils were below 2.0. Now I had thought it was if they were below 1.0 as although technically neutropenia starts below 2.0 it’s only classed as mild risk of infection at that point, moderate starting below 1.0 and severe starts at 0.5. So I should have been in isolation for the past week.  My neutrophils on Saturday were 0.9 so they had dropped a little bit further but my platelets had gone up to 238 which is well above the normal lower range of 150.

I got questioned about temps, shivers, chills in light of my neutrophils and white blood counts but was able to say that apart from the slight bleep last Sunday there hadn’t been anything. Except I forget that I’d get a ‘bite’ on my right boob – minds out of the gutter people – it’s like an insect bite. How did I forget? Well it hasn’t bothered me apart from Wednesday night when I first noticed it when it was a bit itchy or when I have a shower and notice it again – which was how I remembered on Friday tea time that I’d forgotten it. I’ve been keeping an eye on it since and it seems to have settled down but I won’t hesitate to flash it at somebody (preferably in the medical profession) if it turns iffy.

After all we learned about peritoneal dialysis I don’t get to put it into practice – at the moment – due to the increased risk of infection during chemotherapy. I was a soupcon disappointed to say the least but obviously could see the sense and the issue of the time I spend away from home on dialysis days has been resolved somewhat this afternoon when our next door neighbours (who have given me a lift to and/or from the Royal previously) said they were happy to collect me on Tuesdays and Thursdays if B dropped me off. When I asked if she was sure, she said apparently they consider I’m way better off getting home, having a cup of tea and settling down for the afternoon than hanging about waiting. B has been picking me up on a Saturday anyway but will now drop me off instead.

Oh and I had broached the subject with B last night of driving myself in on Tuesday (since I felt good and was anticipating feeling even better by then) as I really wanted to go to Armchair Yoga on Tuesday afternoon. Initially or that should probably be straight away practically before I’d finished speaking B said ‘NO’ but then when he’d had a little think about it and I’d said that I wouldn’t do it if I didn’t feel up to it he said ‘Well, okay, as I’ve not yet had the bumps and scraps fixed yet it won’t matter if you do another one.’ So B probably had to fight the urge to run round the garden wall and hug our neighbour in relief.

I’ll be referred to the Transplant Team in relation to a donor stem cell transplant.

And other than getting a prescription for things I was running out of that was basically it. It was good to note that the pharmacy still think a four week s`upply of paracetamol and Tramadol is 32 and 30 respectively. I have no idea why this is but everything else I got four weeks worth of but as before these two only get issued in one box lots. We did however get a free carrier bag as requested by B as I’d walked out of the house with my knitting and myeloma notebook and pencil in my arms without putting them in anything. He has pointed out that my memory isn’t what it used to be – I blame the medication which is appropriate because I’d forgotten to take it all on Thursday night!

I was lying in bed wondering why my back was so cranky and started working out how long it was since I’d taken the night time painkillers when I realised that I didn’t think I had. I definitely didn’t remember taking the Thalidomide which are kinda doubly locked in so have to burst through foil and cardboard. I did remember that it was a new box that night so it would be easy to confirm so I got out of bed, went down to the kitchen, lifted out the box of meds, took out the Thalidomide box and… no, I hadn’t taken them. As I didn’t want to overdose on paracetamol I only took a Tramadol just in case but what I think happened was this – I went into the kitchen and popped four Calcichew into my mouth which, as the name suggests, need chewing, whilst chewing I thought I might as well take my temperature and then remembered something I needed to ask about in clinic and went through to the dining room where I’d left my notebook handy in case of such occurrences and wrote it down. I then went back into the kitchen, put the thermometer back in the box, put the box back in the cupboard and made a cup of chamomile tea. If I’m distracted from something there’s a huge chance I’ll forget what I was distracted from.

And then we went and had fish, chips and mushy peas at the nearby Sotos and bought a pan so lovely it deserves a post of it’s own.

Royal Holiday Day 3

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

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

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

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

Everything’s coming up roses

Yesterday’s knitting and crochet should have ended up looking like the rose tea cosy I made last year. And it did last night but not so much after I inadvertently put it in the washing machine this morning on a synthetics cycle. ‘I’ll just bob it in with the baby jacket and crochet blanket’ I thought and in my haste I neglected to register that it was wool. What was odd though was that the roses, which were pure wool, didn’t felt as much as the cosy body. I don’t know whether the fact that they were crocheted had anything to do with this or not.

I should have included something to show the scale but needless to say a very small teapot now would be required.  As it was to be a late Christmas present I’ll need to redo it. I initially thought about cutting the roses off and knitting another base but couldn’t find the right colour as I’d used the last of the green. So I ended up deciding on a whole new colour scheme.

I claimed my bed at the Royal this afternoon (or yesterday afternoon as it is now since dialysis was a bit delayed meaning I’ve only just been hooked up to the two bags of chemotherapy goodies) after B had cooked us a nice lunch. He’d asked me on Tuesday to ask about the results of the bone marrow biopsy but I’d forgotten plus as I said to him I didn’t know if the dialysis unit would have been able to access them or indeed interpret them if the findings weren’t straight forward. When we saw one of the junior doctors earlier B reminded me that I hadn’t asked so I said I would when she came back. I forgot again but not to be put off B asked instead. She said that she couldn’t let us know but she would get one of the registrars to go through them with us.

Later one of the registers popped in and went through the treatment plan and then got to the results of the biopsy. As we knew the aspirate sample wasn’t any use and it turned out that the trephine was smaller than the ideal length of 2cm but results had been obtained from this.

Now bearing in mind that the sample could have been taken from a low plasma point in the bone marrow, but which had been 90% in November, and it could be higher in other places there was nothing! Yes, NOTHING. Well he did say it would be classed as 1% and I believe, if memory serves me right, that for myeloma to be diagnosed from a bone marrow biopsy it needs to be above 6%. I’ll be getting another one after this cycle of DT-PACE to confirm the results but basically if it was this level somewhere it wasn’t going to be as high as 90% anywhere else. Another test was also done with regard to clones and I have to admit I wasn’t familiar with this, and can’t repeat it in detail as the other result was just sinking in, but apparently there weren’t enough cells to do this which was good. He said if they had run the test on a new patient and got these results there would be no reason to consider redoing them.

Like last time I asked B if he was glad he asked and this time he was. I suppose it was like an early birthday present for him.

Deja Vu DT-PACE

Yesterday we went to our clinic appointment to find out how things were going. We bumped into Sean in the waiting area, which is always nice, along with a couple of ladies who also have myeloma. As it turned out the results of the bone marrow biopsy weren’t back but other results were and a plan for the next step had been formulated.

My blood counts are measured once a week at the moment. The blood is taken while I’m having dialysis and this means I don’t need to be stuck with a needle – which is always a plus. So my blood results from Tuesday (24 January) were –
haemoglobin – 8.3 (normal range 11.8 – 14.8 for women) This would explain why, although I’m feeling better, I don’t feel completely like the energiser bunny. In renal they don’t routinely give blood to increase haemoglobin, they use ARANESP which promotes an increase in the production of red blood cells. It takes longer to have an effect than a transfusion but apparently if you’re on the kidney transplant list the use of blood can cause issues with antibodies. The doc said that haemoglobin is usually the last count to get back to normal. Today it had gone up to 8.6.

WBC – 4.3 (normal range 3.5 – 11.0)

Platelets- 451 (normal range 150 – 400) B was bothered by this and, despite me having told him that the normal range went up to 400, kept asking me to check and even when I did double check with a print off of blood results straight from the hospital he still asked the doctor yesterday – mind you the doctor said 350 so B probably won’t believe me in future anyway – he’d already asked whether I’d written the number down wrong. Fortunately I was able to point out that a nurse wrote the figures down for me. It turns out that the increase is likely due to dialysis and is nothing to worry about.

Although the results of the bone marrow trephine were not back, the aspirate sample not being measurable (which has happened before), the paraprotein result as at 19 January was *drum roll please* – ‘no detectable paraprotein found’. My IGA level (the type of myeloma I have) was previously 24.09 and at the 19th was 0.37 which is actually slightly below the normal range of 0.8 – 2.8.  And I’ll be tissue typed with regard to a donor transplant.

So I get to have another course of DT-PACE possibly starting this week. My name will go on the board and when a bed is available I’ll get a call. This week!! If I’ve not heard anything by Wednesday or Thursday I need to give them a ring. This week!!! Now despite having spent nearly 10 weeks vacationing away from home last year this is only the second time I’ve had prior notice of going into hospital – the first time being my stem cell transplant in 2010. This of course has produced a…

To Do List

Ring ASDA re the claim for Buddy’s allergy treatment – which they have declined as they didn’t receive some information from the vet along with declining a second one sent which was below the excess. Now I thought because it all related to allergy treatment they would have just tagged it on and as the total bills are around £1,000 it really needs sorting

Download films/games to netbook

Buy pyjamas – because they always come in handy?!?!? Although B wouldn’t even contemplate a trip to Primark yesterday

Buy sponge

Connect the xbox to the internet – essential of course

Buy small fridge – the lady in the next bed in June had a little fridge which I have to admit at the time I thought was more hassle just bringing it than it was worth in, but realised in November/December that they are actually really handy to completely avoid warm yoghurts and milk going off

Buy some soft bras along the lines of the ‘ahh bra’ I saw advertised – because it’s so uncomfy to sleep in a regular bra BUT and that’s a big BUT there’s always the issue of being attached to stuff which makes it impossible to change in and out of bras (or tops) as easily as usual. Plus when you get plucked from your bed for dialysis in the early hours without warning it would avoid having to sit with a blanket clutched around your bosom (or barms as I learnt they could be called yesterday) because you were half asleep when collected and neglected to register that the short sleeve pale jim jam top was wholly unsuitable for public consumption

Buy badger lip balm – my lips went all peely last time. They have some lovely interesting flavours – pink grapefruit, lavender and mint – but I went for unscented in case some of the interesting loveliness made me puke.

Buy shower gel

Buy material – despite going to the fabric shop, Abakhan, yesterday (we didn’t walk, we parked closer) nothing jumped out and said ‘Use me to back your Christmas embroideries’. What do you mean ‘This could wait’?

Send three emails I’m behind with

Make soup – I’m not really a big fan of tinned soup and considering how my mouth went last time I started thinking that homemade soup would be a good idea. B could then heat it up and bring it in – when I floated this past him last night he didn’t think it was as good idea as I thought and as I discussed it with him I realised that when my mouth was sore I didn’t really eat much of anything so I’m not too sure how good an idea it was not even considering that when Auntie Ann and B brought soup in I returned it

Make pasta sauce – see above

Order B’s facewash

Make a decision and order Auntie Ann and Uncle Ray’s Christmas present – one of the last I need to sort out

Send one of the Christmas presents I have got

Pay credit card bill

Buy new laptop – Currys have admitted ours can’t be located so are giving us enough to buy a similar spec one. Of all the things on my list B was so taken with this one he planned to go this morning but then remembered that I had dialysis and Auntie Ann is visiting this afternoon so he’ll either be pushing her out of the door or I have a feeling we’ll be going tomorrow

Sort out a knitting pattern – I quite fancy something wearable for me, but it would need to be uncomplicated due to potential lack of concentration so nothing multicoloured as the four colours on a row were too much last time

Buy wool for knitting pattern

Take before and after photos – When I said this to B yesterday he looked at me quizzically ‘Not of me.’ I said ‘Of the dining table’ because by the time I get home it’s usually hard to tell what colour it is for the piles of post and other miscellaneous detritus

Check dates new series are starting on Sky and add to planner – ohhh, two start when I’m potentially away so I’ll need to remember to remind B (if we get a laptop I’ve told him I can email him requests) but with the new HD box which has a gazillion hours of storage he won’t be asking me this time what can be deleted. BUT if I got him to run an extension down to the lounge so that we could hook the Sky box to the phone line (don’t tell Sky as permenant connection to a phone line is part of the contractual requirements) I could set recordings from my bed. I think we’ve got everything he’d need – drill – check, bit long enough to fit through cavity wall – check, extension cable – check, enthusiasm – ch… well, what do you reckon? And I think I forgot to mention that when I order the new box we also go £100 of Marks and Spencer’s vouchers which more than covered the cost of the box. We very rarely shop there mind but that’s not the point when they’re free

Take library books back – I’ve only had them since September. Don’t worry I’ve renewed them so it’s not as if I’ll need a bank loan to pay the fines

Get new book to read – if they’ll let me have anymore

And… no wait, I think that’s actually it. No it’s not I now have a new one. I made a pram/cot blanket for one of the health care assistants last week and one of the nurses asked about one today. After initially declining I thought, well it’s easy and would give me something to do before going in to stop me adding to the ‘To Do List’ and she’s happy to wash it herself if I finish it whilst I’m in. Never one to miss an opportunity to show off my handiwork here it is…

Double knitting yarn on 4.5mm hook using daisy pattern it measured 75 cm x 94 cm.

Now I have actually done two and a half of them already. There’s nothing like a bit of pressure to make one get one’s finger out but how did I manage a half? Well I rang ASDA about the information they needed from the vet but neglected to ask them about the second claim. Doh!

Me Bum’s Sore

Okay not so much now but Wednesday and Thursday if I sat down without thinking about it and pressed up against a cushion in the wrong manner it made B jump. Not so much the sound of me actually hitting the cushion more the yelp I emitted. How come I had a sore rear end? Well…

Last Friday we went to the Blood Clinic and saw the Prof. My blood counts, neutrophils, white blood count and platelets were all well in the normal range with only my haemoglobin slighty low – which doesn’t seem to be unusual for me – plus the counts had been staying there on their own. I haven’t had a donation of a kindly stranger’s blood since 23 December. This and the fact that my ‘quality of life’ was so much better than eight to ten weeks ago gave the Prof the indication that all was going well however the only way to really see how effective the DT-PACE treatment has been is a bone marrow biopsy since my paraprotein reading is not a reliable marker on its own. He asked me how I felt about this as I was as fully involved in the decision making for my care, I said that I’d thought as much and indeed this was what I’d told people when they’d asked how we would know how things were going.

The mention of quality of life always makes me nervous. I’m not too sure why exactly maybe because one day I’ll have to say it isn’t good and will I admit to it at that time. After having been in a lot of pain with my collapsed vertebra I would say that my quality of life at that time was pretty low. For a while I couldn’t even get in a comfortable position to knit, well or sit, stand, lie down and laughing, coughing, sneezing resulted in me nearly, or occasionally actually, ending up on the floor.

When my back eased off, before it got worse, I’d said to a friend that I didn’t know how people coped with bad pain all the time. She said that they probably got used to it but I don’t think so. I truly thought that the pain I had before I was diagnosed was never going to go away and that was a horrible thought. So I think for me how I will potentially feel tomorrow is a measure of quality of life – that even if I feel particularly tired or throw up a lot one day it doesn’t mean that tomorrow or the day after will be the same. Let’s be honest no-one has a wonderful day every single day, even if its only due to a self induced hangover after an over indulgent weekend. Quality of life is the culmination of all days – and maybe letting the bad ones slide and making the most of the good ones.

Anyhoo, Tuesday, after dialysis, I went up to the Blood Day Unit for a bone marrow biopsy. The actually aspirate and trephine samples, done by the same lovely registrar as last time, were fine – okay it did hurt a bit but it’s not like it lasts for long and I only had to pause briefly mid sentence twice – and the subsequent lie down was uneventful. When the requisite ‘lie down’ time was up one of the nurses checked the dressing, which was wasn’t showing even a hint of blood, and I got up off the bed. I popped on my shoes and was stood chatting to the nurse when I thought ‘My bum cheek’s gone warm.’ I looked down and there was blood spotting onto my shoe and the floor. The nurse whizzed off for some gauze and I sat down on the bed, she popped the gauze over the dressing and I got to have another lie down. Fortunately I had dark brown linen trousers on and a long winter coat so the blood wasn’t easily evident – we discussed how stylish I would have looked having to venture home in a hospital gown with my stripy pink socks and flat tan shoes sticking out the bottom. The nurse also did an excellent job of removing the blood spots from my shoe.

The additional lie down meant that I was late for my ambulance ride home. B rang while I was lying there and said he would come and pick me up if it was there problem. When I rang the ambulance reception they said I could still have a lift home but, since I’d missed my allocated ride, it would depend on when a suitable crew got back and most of them arrived about five o’clock – it was currently ten to two. Needless to say B picked me up.

During the course of the bone marrow biopsy the junior doctor assisting asked me whether I did anything else other than knitting and crochet. The registrar answered ‘She’s not got time for anything else she’s a professional patient.’ On Thursday I had cause to think that if I got paid for my time at the hospital I’d probably have the best paying job I’d ever had. I was all ready to be collected at ten past six (in the morning) with B standing watch at the porch window and getting more and more antsy as time went on. At seven I phoned up to see where they where. The co-ordinator didn’t know but said she’d ring me back. B was having to call into work that morning so said he would take me and then go straight in. I rang back to tell them this and she said that was fine, they had sent a taxi but it would be quicker if B brought me, they’d let renal know I was on my way. I thought the mix up may have happened because I didn’t get a lift home on the Tuesday however, it turned out that the two guys on the ambulance ride home hadn’t been collected that morning either and it was only after they’d both phoned that they’d been collected by taxi. We then waited ages for our lift home. So after being ready with my coat on at 6.10 am I got back home at 3.20 pm. Mind you it’s giving me lots of time to be crafty. Here’s what I did yesterday…

I used some of the left over yarn from Bright Star and the pattern is a free one – Garter Yoke Baby Cardi.  I didn’t finish the cardigan yesterday as Auntie Ann and Uncle Ray visited as I got home and then I had to fit in a 3 to 4 hour nap and then tea – which I actually made myself with only a minimal amount of assistance, and that was just so B didn’t think he was leaving it all to me – and then more sleep.  That’s only the second hot meal I’ve made since I’ve been home, B has taken over as chief cook.

So, here’s the finished cardy…