Monthly Archives: April 2012

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. 

 

I’m all out of wool, I’m so lost without it

and I’d run out of cream which was going to be my edging colour for both the inner squares and the outer rectangles.  So under duress he brought me a new 400g ball of cream aran, a pair of 4.5 mm knitting needles and the substitute cable needle.

I had found a lovely little jacket pattern at knitty.com –

I also tracked down a hat pattern at sweaterbabe.com – Cable Baby Beanie – and altered the rib to moss stitch and changed the cable stitch to match the one on the cardy.  After B brought me a darning needle in this afternoon, they both now look like this…

Needless to say finishing things off seems to usually take ages but it’s now done and I have nothing crafty to do.  I knew I should have pressed B to bring me something else in addition to the darning needle – he didn’t even want to bring me that suggesting I might prefer to ‘Have a rest’.

Now I’m not saying I’m easily bored – oh wait, yes I am actually.  Yesterday I changed my own bed – and not because I’d had a boo boo I’ll have you know.  I was about to remind the Health Care Assistants when I thought ‘What’s stopping me doing it?’  The answer was nothing and it made a change since B changes the bed at home because the bending starts my back off however with the benefit of an adjustable bed no bending was required.  I also assisted today – well I’m going with ‘assisted’ but ‘hindered’ is probably a better description.

One of the registrars called in this afternoon and asked whether Prof had said if I could go home after the chemotherapy had finished or if we needed to wait until my counts went back up before I got released.  As it turned out I got disconnected while B was here and if I’d thought on I could have pushed to go home then!  Just kidding!!! B wouldn’t have gone for it and the nurse I said it in front of thought that that was being a bit too keen – plus although B has cleaned the bathroom today he still apparently needs to wash the bed sheets.

I forgot to mention that I’m concerned that Prof knows me too well.  As I’ve said me and the steriod Dexamethasone don’t mix well so when I got my first dose last Thursday and it was the same as last time I queried it as Prof said we’d look at reducing the amount.  The nurse said she’d ask about it and shortly after Prof and one of the junior docs arrived and he informed her, to her surprise and the surprise of the nearby nurse and subsequent visiting registrar, that in view of my extreme reaction to Dex it was up to me how much I took.  There I was all geared up for putting my case across for taking less than suggested or in fact none at all and I ended up with free reign.  Prof’s method actually worked like a charm and I had to give proper consideration to the amount I wanted to take and felt I had to take some as I’d been entrusted with a completely voluntary decision and indeed when the registrar suggested that I might want to consider taking 6 mg instead of 4 mg I immediately wanted to say ‘No way’ even though I’d thought this myself.

Other Creative Spaces can be found here – at least I’ll have plenty of time in the morning to do some serious looking at other craftiness.

 

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!

 

While I remember

I was going to share intimate details of where and when I’ve been poked and with what (oh er Mrs!) but decided I’d save that for later and instead tell about forgetfulness while I remember.

As I’m sure I’ve said previously, well I think I may have, my memory is not what it used to be.  Years ago an Ops Director I was PA to asked me had I done something, knowing full well that I hadn’t physically had time to do it, and was taken back when I handed it over (I’d done it at home).  He said that when when I was born I probably appeared telling the nursing staff exactly what to do and the most efficient way of doing it.  I don’t think I need to say that this certainly doesn’t apply at the moment.

I’ve had to adapt round the forgetfulness – I’ve tried lists, which I’ve always loved – ‘My name’s Paula and I’m a listaholic’ – but if a piece of paper and writing implement aren’t to hand by the time I’ve got one I have literally no idea what it was I was going to write down.  If I’m distracted mid sentence by something, or rather anything; a bird, a stray ray of sunlight, Buddy burping,  I can’t always remember what I was saying.

Speaking of Bud he’s probably been affected most by my forgetfulness.  Fortunately B changes Bud’s water when he gets in from work so there’s only two days in the week he is left to my devices which have included –

♥  not changing it at all (so at least he still has water)

♥  taking away his old dish and replacing it with nothing

♥  taking away his old dish and replacing it with an empty dish

Now I have to put the clean dish down and fill it before removing the old one.  I’d find myself getting my tablets, making a drink and little Bud would be water-less.   One Saturday when B was up, Bud was stood at the side of me whining and grumbling I thought to go for a wander in the wood but when B went through to the kitchen a bit later it turned out that he was actually asking for a drink.  Yes of course I felt bad.

B’s stopped asking me to do anything in relation to the washing machine and time delays the dish washer before he goes to work so I can just pop anything else in and not have to remember to switch it on – I just have to close the door.

A few weeks ago I realised we needed more toilet roll in the bathroom.  After I’d washed my hands I found myself standing in my sewing room thinking ‘What did I come in here for?’ realised it was the toilet roll, which is in our bedroom and promptly went downstairs – B got some out later.

Oh, and just before Easter I arranged for a firm to call round and give us a quote for a conservatory.  Fair enough I only phoned on the Wednesday and they called on the Thursday but the only time I remembered to tell B was when he was trying to manhandle Bud into a secure position in the car for a trip to the Doggy Dermatologist.  A point in time when I didn’t think such trivial news would be appreciated.  Needless to say B did find out after he’d been and then had the audacity to make me feel guilty.  When he started with ‘Well it would have been nice to know’ I braced myself to retaliate to some whingeing but then he said ‘because I would have liked some input’.  ‘How dare you make me feel bad’ I thought.

And don’t get me started on the shower here on my holiday.  It’s down the corridor as opposed to just outside the room and I don’t think I have once managed to get in there dirty and come out all clean ans sparkly without one, two or even three trips back down the corridor for something.  Generally finding out I’d forgotten something after I’d got undressed.  This morning I thought I’d cracked it and even bragged about it on my way out of the room – only to have to come back for… shower gel!

BUT Friday morning I, or rather B, experienced the mother of all forgetfulnesses (phrase inspired by The Cat in the Hat film and the mother of all messes – though I think that could be in my bedside locker shelf where my netbook and phone chargers seem to snare wayward hands, fruit gums, mice – no matter how much I tidy it three seconds later it looks like it’s been pillaged by Vikings).

B phoned me on Friday and we had quite a confusing conversation about him getting copies of Bud’s pet insurance claim from the vets – which basically included me wondering when he’d had chance to do that as I’d forgotten they’d been to the vets that morning – and an equally confusing conversation about the rugby match that night I had to say ‘Hold on a sec’ as the Peritoneal Nurse had called round with my order of supplies for this week.  I asked him a view questions while he unpacked and then I ordered a cup of tea from the hostess and went back to doing my logic puzzle.  While I was doing this I realised I hadn’t told B something the registrar had said to me that morning, I then realised that I didn’t remember saying bye to him which lead me to realise that he was still on the phone!

I popped my earphones back in (as I tend to use them rather hold the phone to my head – I can keep knitting) and could hear B shouting ‘…I was shouting Paula’.  Needless to say he was a tad frustrated.  Now the time various if you asked B he’d say I left him for 25 minutes but I’d say it was more 15, well maybe 17.  In an attempt to make me pick the phone back up he’d been bellowing ‘Paula’ at the top of his lungs while he was standing in the bedroom.  So much so that our next door neighbour, who was pruning some bushes along the drive, had shouted up ‘Are you shouting me?’ and I’d caught the back end of B’s response.  With using the earphones he could have been shouting until he was blue in the face, and indeed probably was, and there was no chance I would have heard him.

B told me how much more he could have got done if I’d not left him hanging there – in fact he told me for so long he probably ended up even further behind.

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.

Peritoneal Dialysis Training

After Haemodialysis (HD) on Tuesday I sauntered down to the Peritoneal Dialysis (PD) Unit to start my CAPD – continuous ambulatory peritoneal dialysis training.  When I left at three ish the sister said ‘Go home and relax, you’ll be tired after this morning and the concentration this afternoon’.  I thought ‘Well I have been awake since 5.25 am but don’t feel too tired.  However I got in the car and felt whacked.  B took Bud for his walk while I had a shower, put my jim jams on and settled down on the settee.  A friend phoned at tea time to ask if it was okay if she called round that night – it was a good job I’d had a kip.

Wednesday I went for more training leaving the house at nine and B picked me up at two to go to the dentist.  I’ve still got the numbness in my lip/chin and it’s been a bit achy.  The dentist couldn’t find anything wrong visually or by tapping or poking.  She did say that any ‘proper’ toothache could be being masked by the numbness.  We agreed I’d mention it at the Royal and if they recommended any tests she could carry out she was more than happy to do them.

I so nearly didn’t get the appointment.  I got there and the receptionist said I was next on her list to contact as they had a problem with equipment and my appointment would need to be rebooked.  I explained about the forthcoming treatment (still no bed available as at last Friday) and the need to get any infection identified.  The dentist agreed to see me on the understanding that if treatment was required it couldn’t be done there and then.  She was however able to identify that I have good dental hygiene.

A friend called round on Wednesday night and brought her laptop as she couldn’t get her printer to print from it and her son was working away.  As Pat has the same level of patience with anything computer related as the average three year old has with logarithms she asked if I could do it.  The laptop wouldn’t talk to our printer either and when I attempted to connect it to our broadband I discovered the reason I hadn’t been able to connect B’s xbox – apparently you can enter the code 57 times and still not get connected if you’re entering the wrong code – 8s can look a lot like Bs.

Thursday I had potentially my last HD.  Potentially because Prof didn’t want me doing it during chemo as he felt it increased the risk of infection.  However the sisters in PD said it was unusual once PD was started for people to go back to HD, unless they had peritonitis.  The training on Thursday including spotting the signs of peritonitis basically an infection in the peritoneum where the fluid resides.  From quarter past three on Thursday when we left the Royal I was on my own!!!!!!!!!!!!

So far so good apart from some minor boo boos and B asking me if I felt dialysis is taking over and if I thought I had a sh*tty life.  Unlike last year when he asked me this and I countered that by association that meant he did too I just went with ‘No’ – I was lying on the settee at the time half asleep.  The PD is getting quicker as it becomes more familiar.

Last Monday we (I say we but it was mostly B with me getting in the way I think) made room in the garage to accommodate the delivery of my PD supplies.  I think this may have resulted in a pain in my right shoulder blade which I aggravated on Friday when I carried a box upstairs.

I’ll share details of all my free goodies (as pictured below) and what I do with them shortly – basically when I can take photos of the relevant things without contaminating anything that needs to be sterile.