Monthly Archives: December 2011

Me Balls are too Big

I thought it was about time we had a craft related post.  I’ll start with what I did while on my five week Royal-cation.

I did 20 fancy crocheted squares – I had 63 to choose from in the booklet which was just as well as there were a number I undid, either because I had too many or too few chains left at the end of the base row or it didn’t turn out the right size.  I must apologise for the picture quality but I took some of them on my phone.

I had plenty of yarn left over from making the fancy squares so I made another 45 (I already had five made at home) for Share a Square.  Shelly was a little short of contributors, as every square in an afghan should come from someone different, so it was suggested that if you crocheted them you could put a friend/family member on the tag that accompanies them.  So I did this batch from my Auntie Ann  – needless to say I had to handwrite the tags.

This was one of the squares I’d already done.  This and the other 45 squares are in Red Heart aran/worsted and this one is called Bikini.  I have  to say I was very impressed with Red Heart’s service.  I ordered on a Saturday night, the order was processed on the Monday and I received it Friday – all the way from the US.

Now we’ll get onto the subject of big balls and me being a tad (read that as very) slow.  I selected some yarn for a blanket from my local yarn store over the phone and a friend picked it up.  B brought the book in I needed – Comfort Knitting and Crochet Afghans and off I went.  I have to admit that the last week in the hospital I didn’t do any knitting at all.  Yes, I felt somewhat crappy but if I’d had something to do that didn’t involve four colours in a row I might have been more inclined to do some but I had already managed a fair bit…

Plus the balls were all 400g and actually seemed to be getting bigger rather than smaller, as they loosened up, so it was really a mither to untangle the yarn part way through.  I started knitting again on Wednesday and saw the light – why didn’t I just wrap smaller balls to make it easier – Doh!

The pattern itself is really clever, well I think so, in that you start with a straight row of stitches…

and because of the decreases in the middle it forms a square when finished.

On Tuesday this week I decided I’d like to do some crochet and thought I’d start a blanket for the creche/hospital in South Africa that our GPs’ receptionist, and husband, are involved with using the bag of tiny balls that one of the other receptionists gave me.  I also had quite a few bits hanging about myself.

I crocheted them together as I went along otherwise I would have crocheted round each square in the same colour, say cream, to unite it more.  Now my sister in law, Gill, rang on Tuesday to ask if I had a crochet hook that she could borrow for some double knit yarn she’d bought.  She’s never crocheted before but is having trouble sleeping so she thought it might be an idea to learn so that she could crochet when she’s awake in the middle of the night.  She’s left handed but had found an instructional video for left handed people on the internet. I said no problem, I have lots of crochet hooks.  Turns out I only have one 4.5mm which was the size I was using for the blanket so after I’d lent it to Gill I needed something else to do in dialysis on Wednesday, so I did these…

They are in a chunky yarn, which I wouldn’t usually use, but was given two bags full by a friend from Armchair Yoga so I thought I’d use that as it would crochet up quickly.

And finally, I actually finished my second Stephen West Knitalong shawl, for a friend for Christmas, just before I went into hospital.  I hadn’t blocked it though I had left it to dry flat and I was so annoyed with myself on Christmas Eve.  Chris called round with my present (and we had a chat with me in the vestibule and her in the porch – as she had a cold) and I hadn’t had chance to block the shawl.  After she’d gone I went upstairs and when I looked at the shawl it would have been fine – I could have just wrapped it up.  Double doh!

I have to say I really like the colours particularly as I wasn’t too sure how they would look together.

And one little departure from crafting – when I went to dialysis yesterday both the doctor and dietitian called in to see me.  The dietitian was asking me how my mouth was and I said it was loads better, the only thing that really made it sting was the potassium tablets I’d been given to take when I left the hospital.  It turned out that my potassium was too high on Wednesday but this would be the reason and since I took the last ones on Wednesday it should settle back down.

My phosphate had also been low prompting a phone call from one of the doctors on Monday afternoon but since I didn’t feel nauseous and was eating it wasn’t too much cause for concern and it had gone up a little by Wednesday.

The other thing was the 24 hour wee collection I’d taken in on Monday – 1.8 litres!  Just a tad different from the 200 to 300ml I was producing at first.  When analysed it didn’t have that many toxins in it which would have showed that my kidneys were recovering and dialysis could be stopped at some point,  but it did have some.  The doctor said though that there is still a little hope that they will pick up and I need to do a monthly collection.  It was just as well that I hadn’t got my hopes up but then again you never know, stranger things have happened at sea.

Finally 20th of the Month Photos

Obviously I wasn’t able to take my 20th of the month photos for December so I took them yesterday and I realised I hadn’t posted November either.  Unfortunately unlike last year we didn’t have snow.


 Right – with a lovely view of our bins.

Left – with next door’s car.  Obviously I wasn’t at my photo taking best.

Middle – with another  lovely view of the container used by the workmen replacing the footpath to the neighbouring road


 Right – minus the bins

Left – without the neighbour’s car

Middle – sans the container

Montage of the year to follow – when I can be bothered to look at the hard drive with the backed up information on it.  I started before and nearly downloaded 3,000+ photos.

And how cute is this…

Bud has two toy boxes – one upstairs and one downstairs.  On Tuesday he emptied some toys out of this one and put them (well, not quite all) on his mat.  Apparently while I was away he didn’t bother with his toys at all.  Oh, and another thing he does sometimes, which I find adorable though I may be slightly biased, is get on his mat with a toy and wag his tail as he plays with it with no interaction from us!

Happy Christmas

Well I made it home by four o’clock. It’s obviously fantastic and was just wonderful to see Bud, who I think was pleased to see me too. I shan’t discuss the state of the back bedroom or the dining room table and part of the lounge actually but that’s just unused as yet Christmas decorations. We had a minor hiccup with the switch from IV to oral antibiotics in that they hadn’t been prescribed on my drug chart. Two of the junior doctors came in, separately, looking for it yesterday and presumably when they couldn’t find it they either forgot or just didn’t carry on looking hard enough. The pharmacy is technically closed today but the doctor that is in got round it by doing an outpaitent prescription and one of the nurses went down to the chemist and picked them up as it was only open until 1.00pm.

Tuesday night I started coughing then Thursday I think I woke up unable to breath through my nose and swabs were taken. The nurse this morning came over to me and started saying that the doctor had said that the swabs had come back postive for flu but as I felt well I could still go home. My counts today were HB 11, platelets 24 and neutrophils 0.0. I gave myself a very short haircut last night as I had started to shed. One of my fellow patients said it really suited me which was what people said the first time funnily enough. Maybe a number two (how a very short setting on the clippers is referred to and now the bodily function) is how I should go in the future.

It looks like it’s me, B and Bud for Christmas lunch. Auntie Ann’s cold hasn’t got better. However she’s making lunch and Uncle Ray is bringing it over – he insisted even though one of our neighbours had made the same offer – they couldn’t have us round either as two of them have colds. Auntie Ann however is really disappointed about not being able to spend Christmas Day together but we are going to have Christmas Day on New Years Day.

My sister in law and nephews left not so long ago after dropping off our presents and as I was sitting typing in the dining room I heard the sound of the bag being investigated by the small furry family member. Fortunately when he didn’t reappear to be near me I went to investigate him. Bud had knocked the bag over and was proceeding to unwrap one of the presents. I wouldn’t mind but it wasn’t even his one it was B’s. He hadn’t got very far. He’s now having a kip, I think he’s tired himself out.

Oh, and one thing that B did do this year that I couldn’t manage last Christmas was get the reindeer antlers on Bud the other day. I asked him how he’d done it and he said ‘I just put them on’. And they were on so well that Bud couldn’t reach them with his paw to take them off himself!

So I wish you all a Wonderful Christmas and really appreciate you reading, commenting and caring.

Love and hugs

Paula xx

Christmas Tree Lights and Pet Flaps

I’ve felt much better today possibly due in part to the good night’s sleep I had.  When the registrar, who had last seen me on Wednesday, came round she said I looked much better than then.  She said I can switch to oral antibiotics from today too which is good because that means I can go home tomorrow! Yaaaaaaaaaaaaaaaaay!

My mouth’s feeling way more mouth and tongue like today.  There’s probably only about half of the old lining and bits hanging around and it’s generally much easier to use.  For example, it took me all of two minutes to take my tablets this morning whereas last Friday night it took me four hours.  I didn’t realise this at the time of course.  I started taking them at 10.00pm and it was taking a while to get them down because my mouth was sore and I kept nodding off in-between tablets – well obviously slightly more than nodding off.  I got out of bed to powder my nose thinking it would be about 11.00pm and it was nearly 2.00am.  Plus it’s way easier to speak.  B brought me a bag of crisps earlier which I managed to finish although you don’t realise just how much you use your tongue to dislodge stuff that gets lodged in your teeth and your finger isn’t quite the same.

The only mishap today was a nose bleed.  And no, I hadn’t been poking my finger up there.  Well, not far enough to cause this one.  I thought it was becase my fingers had wandered in the vicinity of the scab on the inside of the tip (if that makes sense – it’s kinda inside but just at the very bottom before anyone thinks I’m doing a Rudolph impression again) and I’m itching to pick it but it was a proper nose bleed.  I just got some tissue and squeezed the appropriate place and it wasn’t too bad.  Then I grabbed a big wodge of tissue and squeezed for a while and suddenly realised my hand was feeling moist, pulled the tissue away and there was a far amount of blood and a biggish clot.  That was when I pressed my buzzer and let me tell you gauze is much more absorbant than tissue.  It took about 50 minutes to stop completely and resulted in a bag of platelets.

Oh, oh, and I’m not getting my hopes up about this – I’m just going to assume it’s not going to happen so I’m not hugely disappointed – but the renal doctor called to see me in dialysis this morning and said ‘Just because your weeing more doesn’t mean we can stop dialysis.  We need to see if your kidneys are removing toxins as well as fluid so you need to do a 24 hour collection.’  So I get to collect wee on Christmas Day!

But enough about me, over to B.

B went to see his GP on Monday after taking the mounentous decision not to go into work on Sunday night.  Mounumentous as in the 24 and a half years he’s been working for this company (okay technically most of it was for another company until they outsourced their distribution) he has had five and a half weeks off nearly 10 years ago when he injured two discs in his back at work and one day when he had a bad case of the trots.  When he announced his intention on Sunday afternoon, after whispering it to his nephew, while my sister in law and I were gassing and making us suspicious, neither of us could believe it and she got up and hugged him.

Since I’ve been in hospital he’d been getting three to four hours sleep on the days he worked.  I could say he had been coming in and nodding off but there would have been nothing new there and he was actually doing it less than usual probably.  It was getting to the point where he was ringing me up and sounding all woeful and down.  I said to him he was meant to be cheering me up when he came to visit not the other way round.  Plus apparently after seeing me on Saturday he was really fretting about how I was going to cope on my own when I got home.  The first thing his GP asked was how I was but before he answered that he asked if he could read his preprepared statement which included this information and started filling up during part of it.  She told him not to start blubbering and gave him a sick note for three weeks for acute stress and some sleeping tablets – which he has no intention of taking.  She is actually really caring and as I’ve said before I can’t praise our GPs high enough.

When I was speaking to a friend earlier I realised that the mincemeat incident (which has earned him a homemade minced beef pie) isn’t the only thing he’s had trouble with of late or more exactly this week.  Let’s have a shufty at some of the other things he’s done this week other than the mincemeat mix-up…

The roman blind in the kitchen has three cords pulling it up.  One of these had snapped just before I came in but I couldn’t be bothered fixing it at the time and it still worked.  Another one snapped shortly after I was admitted and B has been putting the kitchen light on since.   Oh, there have been discussions, there have even been diagrams and there have been at least three attempts to rectify the situation.  Once B had got past the initial problem of what went where and the concept of just tying a knot in it and not bothering if it was crooked there arose the whole issue of how to get all three or even two of the threads through the screw eye at the top.  I suggested he try a fine knitting needle.  When that didn’t work he had a final attempt this week with a drawing pin!  Despite me telling him that string was too thick he bought some anyway and then came in and said it was too thick.  When it looked like I was going to be home last Saturday he said to the doctor ‘She can fix the blind then.’ to which she replied ‘She’s not fixing the blind!’

A friend called on Tuesday evening and decided I needed a short dressing gown.  So she went out on Wednesday and bought me one.  She was going to bring it in herself but she started with a cold so she rang B to say she would drop it off.  He turned up on Wednesday without said item.  I thought he was winding me up.  He then said he couldn’t remember if she’d left anything or not.  I then enquired as to why she wouldn’t have left anything if that was her whole reason for calling.  She rang shortly after he’d left to see if I liked it.

On Monday Bud’s pet flap broke, or maybe that should be Bud broke his pet flap as he does approach it at speed.  B went and bought another one and fit it on Tuesday.  He had a bit of a struggle with the screws as it was presumably designed for a wooden door thickness and we have uPVC but he got there in the end – after a few complaints about the standard of the initial fixing.  Yesterday when he came in he said he was a bit worried about Bud using the pet flap while he was out as he’d found he had a piece he’d not used.  I have visions of Bud wearing the whole thing as a waistband and clattering his way up the step into the kitchen.  Now I have to admit from his description I had no idea what this piece could be so it was either a really poor description or I wasn’t listening properly as this morning I received a phone call.  B wasn’t too happy as he’d spent two hours fiddling with the thing to no avail and then looked at the box and it turned out it was a free second white flap.  And yes before anyone else asks, because I did, he did look at the instructions.

During the same phone call this morning B also informed me that he’d fused the Christmas tree lights.  We’ve had these lights for years and I had yet to replace a bulb but one had gone this year and he removed it while the lights were on and pouff no lights.  He tried changing the fuse in the plug but that didn’t help however he did notice at that end the label saying do not remove bulbs while lights are switched on.  He also couldn’t find the second box with the tree decorations in it so suggested, instead of looking again in the loft, going into town and buying some more lights and some tinsel.  After our conversation he subsequently found the box and we’re doing without lights.

On Wednesday during the shopping list check of the fridge I realised that he probably hadn’t thrown away the fruit juice that I had opened just over five weeks ago.  As we don’t drink the same juices he wouldn’t have touched them.  So I told him to throw anything of mine that was open away.  Yesterday when he visited he said something that made me question him.  ‘What do  you mean?’ I exclaimed in sheer disbelief.  Apparently it had seemed such a waste to throw the four cartons of partly used juice away, and he assumed I couldn’t have it because of being neutropenic not because it had been open five weeks, that he’d given it to the friend who dropped the dressing gown off.  I can only imagine it would be like treacle or crawl out on its own.  I said I’d ring her later but he insisted on calling her instead.  Fortunately she’d felt so rough by the time she got home she’d left it in the car and gone to bed.

I just hope Auntie Ann’s cold has gone by Christmas Day or B is going to have to cook for us.

B goes shopping

On Tuesday as I was writing myself a little reminder B asked if I could do a food shopping list assuming I’d be home on Saturday. He leaned over to look at the paper and I said ‘I’ll write it down in a second when I’ve written this.’  Meaning I’d write a reminder to write the list not the list, so as he was about to go about an hour later, and us obviously not having spoken that much in-between, I was a tad surprised when he asked for the list.  ‘Did you see me writing one out?’  Apparently he wanted to get the shopping done on Wednesday to stay ahead of the rush.  (After all my efforts he went on Thursday.)

Wednesday morning I went online at Tesco so that I could include exact details on the list B was going to ring in for later.  And I was very exact, because at home when I do the shopping list I realised how many questions he asks about the items I put on the lists I make.  Now I have to admit it was a case of picking the first item I came to in that category that met the criteria which resulted in a selection of a few items that we don’t usually buy such as ‘Ski smooth strawberry and raspberry yoghurts’.  This made B start questioning things – ‘We don’t normally get them.’ – ‘No, we normally get whatever you think is right.’  Resulting in yoghurt with sweeteners and the one with the bits that Bud managed to eat round.  As I said to him on one of his six phone calls querying things while in the store ‘I thought that would make it easier for you.’  Apparently not!

Now bearing in mind we still don’t know if I will get discharged on Saturday I had to pick things that wouldn’t perish if I don’t whilst also bearing in mind that if I do Auntie Ann is going to feed us on Christmas Day, as usual, but also on Boxing Day to save me – plus this also saves me from having the m-i-l round – its not like we need to ward off starvation.

Medically it turns out that my line tested blood culture from Saturday tested positive for streptococcus sanguinis.  This according to the junior doctor who told me is rare.  He told me this after turning up with a pleasant gentleman I’d never seen before who shook my hand and introduced himself as I read his badge which said ‘Infectious diseases’!  And thought ‘What the dickens,’  It turns out it needs 12 days of antibiotics.  The good news however is that from tomorrow ,I think it was, this can be in tablet form, the one the doctor changed to earlier in the week is the right one for this infection, the line doesn’t have to come out and he had no objections to me going home on Saturday if it was okay with my doctors.  He’s calling back tomorrow.

My mouth is feeling a lot better.  It’s much less painful although its shedding its lining which resulted in it feeling very odd yesterday but less so today.  I also managed to chew today.  That said it was only on tinned peaches.  Oh, and this was an issue raised when doing the shopping list.  I’d said to B about getting some steak but not a whole piece for me, just a piece a bit bigger than he’d want and we’d cut a bit off as I didn’t know a) what my appetite would be like or b) whether I’d be able to chew.  When he subsequently checked the freezer to see if we had any of the things listed in he said ‘We’ve still got a few bags of scampi in breadcrumbs.  You like that.’   And he’s not wrong I do but I don’t think I’m wrong in thinking it goes quite crispy and it needs chewing.

My dialysis yesterday today should have been at 7am.  I woke up about 7.45am to the nurse telling me the renal department had rung a few hours before to say due to staffing issues it would be later.  It turned out that by ‘later’ they might 10 past midnight!  I have to say this p’ed me off a bit as it’s not the first time they’ve just reshuffled my appointment without notice and what sort of time is that to be going anywhere.  I got back to bed at 4.30 this morning and woke up at 7.30 when the water jug as getting changed.  I haven’t been able to get to sleep earlier tonight as I think I’m overtired possibly as a result of not sleeping well the night before either.

The prof came to see me today for a flying visit and confirmed the situation with the infection and my mouth and also that he didn’t know if I’d get discharged for Christmas but ‘fingers crossed.’

And finally, B phoned me not long ago over the location of the Christmas decorations in the loft and panicked when I pointed out that he probably put them away last year rather than me as ‘they could be anywhere.’  He did subsequently find them quickly.  However while he was on the phone he mentioned the mincemeat that he’d bought for our neighbour when he was on his shopping spree.  She’d asked for Robertsons Mincemeat.  He’d asked how much, about two pounds.  She’d said yes as she could freeze the surplus.  He’d bought her four packs of minced beef.  She wanted to make mince pies!  I laughed till I coughed.

Bloody Jim Jams

I know there was only Mike said yes but he said it a lot – sorry Margaret.  I have put it right at the bottom so that hopefully whatever the size of your browsing window it won’t jump out at you.  Then again you might be less than impressed.  I couldn’t have showed it to my Auntie Ann, she would have passed out.

I stood up to get my purse from the locker – to pay for the hard drive for the files off the laptop.  As I turned away I noticed a few spots of blood on my wrist.  There was a particularly lovely Registrar with one of the other patients but I thought ‘It’s only a few drops, it would be rude.  It must be my canula.’  So I knelt across the bed and pushed the buzzer and looked down at a patch about three inches square but I could feel it gushing, really it felt like it was gushing, down my arm.  So, I decided it was merely impolite to interrupt.  As I turned round I noticed the canula on the bed still as straight as when it still had the needle in, pressed my hand to the crook of my elbow and called the doctor’s name.  She whizzed over and the junior doctors went off for gauze which she pushed up my arm to the leaking bit.  The nurse then took over with more gauze and really pressed.  So much so not only did it work but today I couldn’t understand why my arm was sore at the back until I went for a shower tonight.  I had a cracking couple of bruises.  But, hey, it worked.  The sticky plaster was still there perfectly applied – seriously it was the most perfect looking dressing ever and ‘that’ doctor that put it in didn’t even get it stuck to his gloves.  A feat I’m sure has never been repeated in the civilised world.  Just goes to show looks aren’t everything.

Before I present the pic – I felt ropy this morning and by late morning my temp was 39.3.  The same bloody registrar has changed my antibiotic and thinks it is all mouth related.  Generally its administered for five days.  B was not impressed.

Because of a query in the way the drugs in my pump are administered I went without the permanent antisickness for about nine hours.  The things I ate (not that much due to the ropy feeling, but some) and drank (a fair bit) stayed down.  However B brought me some soup in and I brought that back.  I have got a bit of a cough and I coughed and brought up an interestingly red coloured production.  It would appear its from my mouth.  There’s been another two bowls since – one including my tablets.   Hopefully by morning it will have kicked in fully again.

So anyhoo back to the jim jam top…

Trout Pout

Tuesday I had some lovely visitors and these two called as well – just kidding Lorna and Mike were the lovely visitors along with my Auntie Ann and B of course.  B left the ward to walk the streets of Liverpool carrying that basket secure in his own masculinity.  I’m sure he’ll save some for me.

Lorna and Mike picked a good day to visit as I felt fine on Tuesday, Wednesday however was a completely different story.    I initially put it down to being unceremoniously and unexpectedly dragged away from my breakfast for dialysis which we’d been informed the night before would be afternoon or evening.  When I got back to the ward I had a shower expecting that would  make me feel better and I briefly convinced myself it did but I didn’t pick my knitting back up.  Plus my mouth had started to get sore. By the time B arrived I was struggling to keep my eyes open.  The doc called in to see me and it turned out I was feeling poopy because my counts had bottomed out.  As I was lousy company and couldn’t keep my eyes open Auntie Ann went home early and I was in bed by twenty to eight.  It turned out that my counts had bottomed out.

Thursday I spiked a temp, not a high one, my mouth was sorer and it was worse on Friday.  I got a new mouth wash.  A friend visited who visited on Thursday said to her husband when she got home she didn’t think I’d be home at the weekend.  I got back to the ward at quarter to midnight after dialysis and was in bed at quarter past and then the new patient in the ward started and she was seriously loud.  She kept shouting and the nurse kept saying use your buzzer other patients are asleep.  They shipped her off to a side room first thing in the morning.

Friday I felt pretty good other than my mouth but I had had two units of blood the night before.  I didn’t sleep too well on Friday night and thought that this was why I felt shattered (okay I probably convinced myself I felt tired as opposed to not well).  Then the renal nurse woke me up to take my tablets and insisted I have some breakfast as one of the tablets needed food – I mean I’d only thrown up once since I’d been there – fair enough they did give me some anti sickness but as some of us know that can have questionable effectiveness at times.  Plus the tablet in question although prescribed by renal (calci chew) in my case was a haematology tablet as I’d discussed it with the renal doctor and he said from their point I wouldn’t need it.  And although I’d said my mouth was sore I couldn’t speak loud enough to explain it felt like I’d chewed broken glass.  So my bowl of rice krispies took me about two hours.  I was right next to a draughty window so ended up with four blankets doubled on me so I put the shivering down to that. Usually I would have got back to the ward and had a shower.  I got back and got on the bed with two blankets over me as I was tired and shivering and then I asked about going home.

I then promptly threw up and one of the health care assistants whizzed the blinds rounds where they stayed until late Sunday afternoon.  I got under the sheet, snuggled down and turned my phone off ring to vibrate.  Of course then it vibrated.  It was B asking if I was coming home.  I said I didn’t know but probably.  Then Auntie Ann rang and said she’d call at the hospital anyway.  THEN one of the nurses offered me a side room so I could get some rest and I said ‘Does that mean I’m not going home?’ and fair dos he said ‘No, it would just be quieter.’ whilst probably thinking ‘I don’t think so.’  I said I was alright where I was because although they would probably have pushed me on the bed I couldn’t be bothered moving.  I was wondering by this time how I was going to get up to get dressed to go home.

Auntie Ann arrived and basically let me nod off.  Then B arrived sheer seconds before the doctor.  We discussed the temp and I mentioned the shivering and basically talked myself into staying in.  So the weekend followed with excellent nurses pandering to my every whim – ice lollies, painkillers, lavender to keep the scent of food away, by the time the lady’s visitors across the way ARRIVED the side room was long gone but on Sunday due to a possible infection, a long lie in on Sunday morning, antibiotics, more antibiotics, painkillers, slavering when I drank, dribbling when I slept, more painkillers and a 24 hour cocktail of painkiller and antisickness in a pump which is still attached and merrily pumping things through a butterfly in the top of my arm.

One of our consultant’s came to see us this afternoon and unfortunately I was feeling a bit pooped then possibly due to my temp showing up shortly after as 38.  Obviously the chemo has flattened everything as anticipated (neutrophils 0.0 on Saturday) and we wait for them to recover while giving me lots of blood and platelets whilst warding off infections.  Plus he commented that my face wasn’t as swollen.  On Friday and even more on Saturday it felt like a balloon with a trout pout – although in reality my lips didn’t look that big.

My mouth has felt surprisingly better as the day has gone on and B can now hear me – well as much as ever.  Last night was a bit iffy and Saturday was impossible.  At one point he leaned in really close over me and instead of turning his ear to me faced me resulting in me croaking ‘Don’t breath on me.’  I tried writing things down but he couldn’t read my writing, something I should have realised from the way he queries the shopping list.

I promise to blog more in future even if it’s just small, gibberish filled posts as opposed to long gibberish filled ones.  Plus let’s take a vote – if enough of you say yes I’ll post a pic of what my jim jam top looked like after my canula just slipped clear of its mooring this afternoon.  I personally thought it was pretty impressive but then again I could be easily pleased.

Back to blogging

Sorry I haven’t blogged, I’ve been feeling pretty good, as evidenced by the crocheting the previous week, making Christmas cards last week and now some knitting and a shiny new toy…

well okay it’s not actually shiny it has a matt finish.

Try as I might I couldn’t get onto the hospital internet and kept forgetting to ask B for the dongle, then it turned out it was in the bag I had all the time and then the laptop bust.  Now it did actually work after I spilt orange pop over the table it was on but who’s to say when it got sticky it may have changed its mind (apparently the laptop doc did say he noticed some spatters of something when B grassed me up).  So B took it home to take it to get repaired and managed to get it to switch on, brought it back and surprise, surprise it didn’t work.  So off it went yesterday (last Thursday) to the laptop hospital where the very nice computer doctor managed to retrieve all my documents and photos for a very reasonable price but needed to send the laptop away for further investigations.  So at the suggestion of my Uncle Ray earlier in the week B bought me an early Christmas present of a net book – with the help of a shop assistant speaking to me on the phone and then the fraud team from our credit card company checking the purchase!

Medically for me here’s where we’re up to.

We started the new treatment on Monday, it’s DT PACE and has never actually been used at the Royal before so involves me being kept in to monitor side effects for approximately two to three more weeks.  The drugs involved are

Thalidomide 200mg currently, dexamethasone (only 10mg not 40mg because we know me and dex don’t mix well), doxirubicin (doxil) 17mg, 8mg cisplatin, 35mg etoposide, 340mg cyclophosphomide.

The first two are tablets and the others have been infused over 24 hours.  Usually the tr

And this would be where technology, on Friday. stops me short again as the new net book runs out of battery charge and it turns out the mains cable doesn’t work.  So B takes the net book along with its snazzy little carry case home on Friday.  He then takes it back to the shop where they provide him with a new cable and he brought it back on Saturday.  However he brings it back WITHOUT THE DONGLE!  ‘And how did you think I was going to connect to the internet?  By magic?  What possessed you to take it out of the bag?’  I enquired gently!  ‘I don’t know I didn’t think you needed it!’  A casual exchange of views, mainly on my part, then ensued.

So since B isn’t visiting me today (Sunday) because he was on holiday last week and he starts back at work tonight, and my dialysis today is one o’clock pm (turned out to be two) rather than seven am it means he won’t have time to visit thus leaving me dongleless until Monday afternoon!

B reached for the snazzy little bag on Saturday night to move it into another bag for some reason known to him alone ‘Don’t touch it!’ I shrieked. ‘Why,  what?’ ‘At the rate you’re going you’ll probably end up taking it home by accident and bringing the dongle in on Monday but no net book, so hands off!’

So back to the treatment – its usually given over four days but due to the dialysis it’s run longer.  I had dialysis on Monday morning and then 24 hours (in theory, in practice it runs over) attached to a bag of doxirubicin and a separate one with cisplatin, etoposide and  cyclophosphamide in.  And then Wednesday, Friday and then Sunday with the last bags of treatment starting last night.

The renal team agreed my tunnelled renal neck line could be used for the chemotherapy only, so no bloods can be taken from or given through it.  This meant Friday and Saturday I wasn’t able to knit as the only place the on call doctor could get a canula was in the crook of my elbow so I had to keep my arm straight (as last time I ignored the canula when it wasn’t in use and crocheted and it came out all kinky).  The canula was for a unit platelets as I was down to 14 and two units of blood as my haemoglobin was 7 and we couldn’t wait until Sunday to top up while having dialysis as I would have been feeling pretty rough by then.

I spent Thursday looking like a half deranged Rudolph.  I started with what we thought was a nose bleed on Tuesday night, it was okay by Wednesday morning and then it started again Wednesday afternoon, so I sat there dabbing politely with a tissue while I had visitors which was really nice.  It wasn’t pouring it was just a constant little drip.  By the time they left I resorted to rolling up a wad of tissue and sticking it up there – and at least I could knit.  It carried on through Wednesday night and even though we tried doh dah watsit acid (something that promotes clotting) that didn’t help.  So Thursday morning, one of the new rotation of junior doctors stopped by to give it the once over.

After questioning me on whether I’d been poking anything with a finger – a conversation I’d had with the friends visiting the previous day – it turns out it wasn’t a nose bleed at all.  I had a little cut right on the end of my nose and which needed pressure applying to it rather than all the dabbing I’d been doing which was just keeping it flowing.  So one of the student nurses had the task of trying to get a tiny piece of gauze and sticky dressing stuck on the end of my nose!  This lasted a few hours and then another improvised one saw me through to Friday.  Now I have a little scab with strict instructions not to pick it!  Because I was hooked up I couldn’t change my top and when Auntie Ann came in on Saturday she said it was nice to see me in something not blood spattered.

I haven’t been sick for over a week, since last Saturday night, but after the piece of pizza, chicken dippers and cheesy bites came back I managed another four cheesy bites!  That should be I hadn’t been sick – last night’s jacket potato put in a reappearance as did the tiny bit of jacket spud I had for lunch today – so maybe no more potatoes!  And do you know how hard it is to be sick when the catering ‘hostess’ is making you laugh.

The Prof stopped by on Friday and acknowledged that I’d compromised on taking the steroids but felt that at the much smaller dose the side effects would be minimal.  They may very well have improved my appetite so far but otherwise – well let’s not say it out loud just in case!  The other myeloma doc is off gleaning information at the ASH conference in San Diago.

As my appetite had been poor and my potassium levels were actually now low the renal dietitian is letting me eat what I want at the moment.  With B being off last week I have been spoilt and for most of the nights this last week we’ve had takeaways – either pizza or chinese.

Oh and I have a fat knee – well both are a bit chubby (and no they’re not normally) but one in particular last night (Saturday) was possibly full of all the takeaways.  It would appear its likely to be pseudo gout as the dose of alluprinol (to stop uric acid build up) is lower because of my kidneys.  It’s not painful just stiff when I bend it and if I happen to forget and squat down getting back up is quite interesting so I have to remember to bend from the hip.  As at today (Monday) fat knee more or less back to normal, still bit stiff to bend but it’s definitely been on a diet.

I had to vacate my little side room and have been on one of the four bed wards since last Tuesday night but I think since I’m feeling better I actually prefer it although the elderly lady in the opposite bed is making me jealous.  On the fluid restriction I can basically drink 500ml more than I wee the day before (so intake is averaging at 750ml) and I may only wee two or three times at day meanwhile she’s passing more water than a race horse!  She’s also a bit mutt and jeff (deaf) which has resulted in conservations such as…

‘Your daughters look like each other.’


‘Your daughters… they look like each other.’

‘My hair looks better.’

‘Yes, it’s nice!’

And the good news this afternoon I may very well be able to go home at the end of the week.