I’m not getting dressed

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

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

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

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

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

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

 

Is it me?

I was upstairs when B shouted me.

B:  ’Can you come here for a minute?’

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

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

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

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

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

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

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

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

Hiccy Burpy to me

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

Its been a lovely bright sunny day

(photo does not do it justice)

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

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

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

Here’s some other pics…

 

Yoga Frog – The Tree

After an inquisitive visit from the small furry family member…

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

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

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

Wonder whose legs those are

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

New shawl, PJ bottoms and socks

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

‘What are you doing?’

‘Come here my pretty’

 

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

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

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

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

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

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

Peritoneal Dialysis

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

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

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

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

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

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

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

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

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

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

Ripply Fish?!?!

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

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

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

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

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

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

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

Other Creative Spaces can be found here.


The Perils of Parking

You may recall that B can be a little ‘precious’ about the his car and the one thing he hasn’t had to worry about since last November is me driving it – until yesterday!  I didn’t even tell him about my intention as I thought to quote a friend ‘don’t trouble trouble’.

With not having dialysis yesterday and our next door neighbours collecting me from Liverpool after I’d dropped off my bottle of wee I knew I would be back in time to drive myself to Armchair Yoga.  It’s not far to our new location, just four miles, but it gets busy along the road and I was a tad apprehensive.  BUT I had the incentive to make a shorter trial run to our GPs’ medical centre – the incentive being I’d run out of stronger painkillers.  If your giving me any kind of look you can save your facial muscles because B already did it when he found out.  How did I do this?  I’m not too sure – I was going to try and explain but when I started typing things they still have me thinking – how did I manage to run out.  Needless to say some niggly pain can certainly be an incentive.

I was reversing off the drive thinking ‘What am I doing?’ followed swiftly by ‘It’ll be fine.’ and it was – apart from a windy moment on the small car park at the medical centre, a little ‘kerb drill’ as my Dad used to say when I moved too far over to allow a car past on our road (I have to say I forgot to tell B about it) and this…

The car is 51cm (20″) from the porch window, a reasonable distance I think but which in B’s opinion is too close.

B had briefly woke up after I’d been to the doctors and when he discovered that I’d been out in the car he wanted to know ‘if it was alright’.  He and Bud were out walking when I arrived back from Armchair Yoga and I looked up from what I was doing in the kitchen to find B giving the car the once over and then when he saw me he shouted ‘Could you get it any closer?’  Well obviously I could of.  It’s one of those things were usually I’d have to push it but I could just see it ending in an emergency glazier and paying extra to have it done before B woke up – he’d probably sleep through the bang.

The best thing is I was actually relieved that B hadn’t seen me stop on the drive since the position the car ended up was the first place we stopped or more likely STOPPED.  At least I know the brakes are good.

A fellow Armchair Yoga-ist said that when he saw our car on the car park he fully expected to walk in and find B in a chair!

Bud and I also went for a tramp in the wood yesterday – a short walk that is as opposed to setting about a vagrant – another first since November.  We went again today at Bud’s insistence.  You do something that he likes once and it sets a precedent.

The Fire

It wasn’t a big fire, it wasn’t even a dramatic fire – well I guess depending on your definition of dramatic (B may dispute this but the couple when I lived at home involving a tea towel above the grill catching light and a pan with a bit of oil in were more dramatic as far as I’m concerned) but it was definitely a fire.

Last Saturday, even though I was a tad tired, I rashly said to B that if he liked I’d make pancakes for breakfast on Sunday.  Needless to say he was quite enthusiastic and pointed out that it had been quite a while since I’d made them.  To be honest since Christmas B has done the vast majority of the cooking and has got very good at doing steaks – beef or lamb.  I just take over as head chef if it involves anything that couldn’t be defined as a steak – apart from frozen scampi.

So Sunday I made pancakes.  Now I can’t say that I started this task with tons of enthusiasm and I also can’t say that the meal we had them for was breakfast although it was our first meal of the day.  I only entered the kitchen, in my jim jams straight from bed well maybe not straight I’d probably used the bathroom first, at 12.03!  I know, what a slob!  It is the longest lie in I’ve had in years and years.

So before I could change my mind I set to and mixed the pancake batter in a half asleep manner but let’s face it it’s not sending a rocket to the moon – or curing myeloma so although I couldn’t remember the exact quantity I usually make (was it one and a half cups of flour or two) it’s not like anyone’s life depended on it.

I’d shouted upstairs to see if B wanted a milky coffee and when he said he did I’d popped the milk in the pan and set it on the gas hob while the pancake pan was warming up.  I invested, not much, in an actual pancake pan.  It’s very flat with a tiny lip round the edge and means that even the first pancake is perfect but the surface is now a bit iffy so I give it a light coating of light olive oil.  In my half asleep state I’d been a bit exuberant with the oil so there was quite a bit heating up.  B then arrived in the kitchen and pointed out that the milk for his coffee wasn’t on.  Now I don’t deal well with mither within two hours of waking up at the best of times and I was really groggy so I believe I may have muttered something about it usually being ready with his pancakes while noticing that the oil on the pancake pan was borderline smoking.  Now I could have removed the pan from the flame but that would have been too easy obviously and would have slowed the process down – even though I knew I wasn’t going to break any records that day.  On a good day I can go from eggs, flour and milk to sitting down to pancakes, milky coffee and orange juice in twenty minutes.  What?  Doesn’t everyone time themselves doing stuff?  Huh?  I think it may have to do with B always asking how long stuff takes to make and getting a bit antsy if I say half an hour and it turns out to take three.  That said, when we did a weekly shop I used to time myself putting it away (three minutes) oh, and when I changed the bed sheets/duvet cover (five minutes).

Right, I think that’s all I timed.  The first because putting the groceries away was really boring and the second to make a point after the m-i-l had told me I was ‘a cheeky bugger’.  I know I was shocked too I mean it’s not like I asked for it…

m-i-l:  ’We’ve been really busy today.’  It was a number of years ago and my father in law was still alive plus I was still capable of changing the bed without my back kicking off – B does it now and no, I’ve never timed him.

me:  ’Have you.’  No, I don’t need a question mark as I wasn’t really asking at this point.

m-i-l:  ’Oh yes!’

Now I wouldn’t have usually asked but since she was always saying she was busy and considering my Auntie En is a year older and at the time looked after her husband, cooked a homemade tea every night (as opposed to anything out of a tin) and made up lunch for one of her sons who’d moved back home along with knitting, sewing, crocheting blankets for charity and going to tailoring or upholstery classes at the local college I did sometimes wonder what the m-i-l’s definition of busy was and curiosity got the better of me on this occasion.

me:  ’What did you do?’

m-i-l:  ’We stripped the bed and put the sheets in the wash, then put them on the line and then when they were dry re-made the bed.’

me:  ’So that took you ten minutes.  What did you do after that?’

m-i-l:  ’You cheeky bugger.’

Where was I?  Oh yes – the fire.  So the pan was smoking and I couldn’t be bothered to do the sensible thing and take it off the flame… I plucked a few pieces of paper kitchen towel out of the cupboard and whipped them swiftly over the pan to remove the excess so that I could pop some batter on the pan but where should I put the now oily towels.  Oh yes, it’s all too easy to say from the other side of your computer screens that the bin may have been a good idea but B was in the way and I needed to get batter on the pan ASAP.  I couldn’t put them on the worktop as I believe I may have mentioned they were oily and that would have involved more cleaning up so it made perfect sense, at the time not so much now I have to admit, to pop them on the gas burner behind the one with the pancake pan and next to the one with the milk pan.  I then proceeded to switch on the flame under the milk pan – except, as you may have guessed, I switched on the one under the oily paper towels by mistake.

Now I think I may have mentioned in the past that I’m your gal for an emergency but B isn’t your guy.  However on this particular occasion he did in fact deal with it exceptionally well, which was good as I was even calmer than usual – to the point of it possibly looking like catatonic inaction.  I watched as the paper towel burst (which I think describes it pretty accurately) into flames and worked itself up into a quite a flame, at least twelve inches high even after I’d switched off that burner.   I could feel B hovering behind me waiting for me to do something but hey, I figured this was the reason that extractor hoods and wall cupboards have to be a certain distance from hobs.  So although I did think that it was probably quite rational to try and put out the flames since it seemed highly unlikely they would set fire to or even singe anything else surely the easiest thing all round was just to let them burn themselves out.  B however didn’t feel the same and started muttering things about damp tea towels so I figured ‘What the heck it might make him feel better’ and let him run one under the tap.  Now I did notice that the towel ended up more ‘wet’ than ‘damp’ and so took over and extinguished the flames.

All we lost was one pancake and not even as a direct result.  B suggested it might be a good idea to remove the tea towel from the hob, because he’s practical like that, and as I lifted it up a little piece of incinerated paper towel fluttered down onto the uncooked side of the pancake.  I believe the look I gave B implying that this loss was his fault was a step too far.  He didn’t say as much I just guessed from the way he snatched open the kitchen door and stormed off with the soggy singed tea towel into the garage.

I gave him a hug when he came back in because it must have been a bit of a shock – after all it was his first kitchen fire and my third.

 An lookie ’ere, I finished the little aran cardy, hat and mittens…

Twisted cables

I knew I’d have to do it – maybe if it had been for me I would have fought the urge but as it wasn’t I undid the back and rectified my cabling boo boo.  Then I undid it again as I’m obviously still behind with my sleep (well that’s my excuse and I’m sticking to it) and made another boo boo when I reknit it because I couldn’t do two things at the same time – don’t tell B he readily accepts with me as a prime example that women can do 16 things at the same time whilst men can’t do one and a half.  Two of our neighbours called round yesterday afternoon and while knitting and chatting I missed another cable twist out of the new knitting.

Mind you it’s not like I need much of a distraction at the minute I also had to undo the left front twice last night and in fact somehow the right front ended up as the left front (ie, the v-neck slope was on the wrong side) and vice versa – so although the right front was ‘right’ it should have been ‘left’!

Fortunately the sleeve turned out to be a sleeve AND had the correct amount of cabling.

It’s not just knitting I’ve been having trouble with.  I tried a logic puzzle last weekend – just one of the simple ones at the very beginning of the puzzle book that only have three answers and with a great deal of effort I got the first one right and the second one completely wrong.  It would have been easier trying to plait fog.  I can’t say it’s got much better since.  However a friend who called round on Wednesday night said that she was glad to see I had my ‘Paula sparkle’ back as it had been a while.  I must be at my best at night as I’m pretty sure B wouldn’t say I sparkle in a morning!

And now I have some potentially very good news from the visit from the renal doctors yesterday.  Basically my kidney function is borderline for coming off dialysis.  I’m having dialysis as usual tomorrow then I get to wee into a container again for 24 hours from 6am Monday to 6am Tuesday and go in for blood tests on Tuesday but no dialysis.    It could be that the amount of dialysis can be reduced if it can’t be stopped altogether and the dialysis type changed and I could do it at home.  I have to admit the brief description of tubes in tummies didn’t exactly have me saying ‘Yay, sign me up now.’  I was home from dialysis yesterday by 12.30 as B came and picked me up.

I’m still getting the migrainy visual disturbances but fortunately no follow up headache.  In fact last  night I got the netbook out to blog and then couldn’t see the screen clearly enough – indeed it’s going funny again now.

My mouth is a teeny bit sorer which may, or may not, have something to do with Sherbet Lemons!

I would also like to point out (and I think that as I can I need to blame either disturbed sleep patterns or medication for this) that it doesn’t constitute a REAL fire unless you need to call the fire brigade – even if the flame is a foot high and it nearly makes your husband enter a state of shock.

Other creative spaces can be found here.


‘There’s nothing like a day out’

B was heard to say as we got back in the car today after going to Liverpool for our first kidney clinic appointment.  ’Yes’ I replied ‘and that was nothing like a day out.’

I’d inadvertently cramped our dining possibilities by telling Auntie Eleanor at weekend that B would pick her up and bring her to visit this afternoon.  Since our appointment was 11.30 I didn’t think it was physically possible to get to the Asian restaurant that had been recommended, by a friend of Sean, eat and get back.  We’d only said on Friday it’s four months since we actually ate out and when we asked for my blood counts on Saturday my neutrophils were high enough to deal with bacteria laden restaurant food – though with all the spices potentially involved it would probably have been a safe bet anyway.  I’d had a GCSF injection on Friday and my neutrophils on Saturday were 12!  Yes 12 – normal range is 2.0 to 7.5 and I don’t know when mine have ever been near the higher end of this so it took a bit of digesting before I remembered the neutrophil boosting injection.  As it turned out I’d decided that I’d rather see Auntie En than eat out on this occasion so I wasn’t waiting for din dins.

I’d thought that after a long day yesterday we’d just nip out to the Royal today, have the appointment and get back home in under three hours.  Yesterday no ambulance transport had turned up by 7.00 to ferry me to dialysis so I rang and they confirmed that the team had left and I was on the list.  They then rang back at 7.30 and said they’d sent a taxi.  In the end I was only hooked up to the dialysis machine at quarter to nine so finished at quarter to one but didn’t have to wait that long at all for a lift home.  The trip home itself however involved a visit to a nearby hospital to collect and then drop off another patient and then a stop of an hour and a half at another hospital as the patient there couldn’t be located.  They or rather we, went to every conceivable collection point.  It turned out that another team had collected her hours ago but no-one had told our crew that she was no longer their responsibility.    At least I know that if I go AWOL at any point they won’t leave without me.  B had decided that he was going to come get me and when I rang him to say that we were finally on our way it turned out he was nearly there – although he didn’t tell me that.  The first I knew was when we pulled onto the main dual carriageway and stopped at traffic lights and my attention was caught by someone shouting outside.  My attention was peaked further as I thought ‘I know that voice’.  B was stopped at the side and was shouting to the driver ‘I’ll take Paula home’.  They pulled over at the nearby bus stop and one of the ambulance guys carried all my bags and coat to the car and explained/apologised to B.  So from being ready at just after six AM it was half three when we got back home.

As it turned out today we did do it in under three hours.  Well, we did the trip to the Royal and the trip home but we didn’t get the clinic appointment.  No, it wasn’t me, I had the right date/time.    We’d waited for a bit in a busy waiting area and then decided we’d go for a drink.  The receptionist said we should check with one of the nurses as there was only a few in front of me in the clinic I was in.  The nurse asked what time my appointment was (11.30), said that they were up to quarter to ten and gave me two free tea/coffee/cup of water tickets.

We had our free cup of tea/coffee/cup of water and in fact I hadn’t quite finished mine when our buzzer went off and we headed back to the clinic.  The receptionist said that the doctor had just left and the nurse would have a word with us.  As it happened a very apologetic health care assistant came over and explained that she’d weighed me and taken my wee sample but had put my file in the transplant pile rather than the renal pile and the consultant had gone without seeing my notes but they were going to see if one of the registrars would come down and see me.  About five minutes later we got called in and told that the registrar was in a meeting but either someone could see me on dialysis tomorrow or we could come back next week.  B is back at work next week so we opted for tomorrow.  I said ‘Well at least we got a free cup of coffee’ and she said ‘Well you would have got that anyway’.  WHAT! – we’ve never had a free cup of water let alone tea or coffee at the blood clinic and we have an ‘ology in waiting there.

On the upside all this transportation has meant imposed craftiness time and indeed after making a denim and white stripped Myeloma Buddy for a member of the Royal catering staff a friend of hers asked for two too…

and the catering lady asked for something else for her first grandson who is due in May.  She was telling me that her son and his girlfriend are going to give the baby her younger son’s name as a middle name since her younger son had died a few years ago at 19 after being ill since he was six weeks old.  You know that old saying about treating people considerately because you never know what things they are dealing with is sometimes so true.

Anyhoo, we opted for a little aran type jacket age six to nine months which I started yesterday…

but there’s a boo boo! I noticed something was amiss when the pattern on the front wasn’t finishing at the same point as the pattern on the back.  Now I had trouble working out where exactly I’d gone wrong and I’m pretty sure it’s not that noticeable and I could probably get away with it but could I live with that?   Probably not.

And here’s a photo of Bud that I’ve been meaning to take for ages but have never seemed to have the camera to hand at the right time…

he starts to get off the settee and then just stops with this front legs on the floor and back legs, stretched or bunched up, or in this case 50/50 still on the cushion and then just stands there for ages.  His Auntie Chris told him he looks like a dork but I find it quirkily endearing and it’s not like I’m biased or anything.

Zzzzzzzzzzzzzzzzzzzzz

SLEEP – Don’t you just love it? I know I do. Although B would probably say that I am fonder of it than most. I think I have very nearly caught up with the sleep I missed whilst on my short Royal-cation. I can’t remember having so many late nights – what with the dialysis and then the ‘deep clean’ on Thursday – I’ve never ever had such a late night out. I’m sure I could easily become nocturnal I certainly function better at night that in a morning.

We (me and two fellow patients) were relocated from the ward to the waiting area of the day unit when the patient who’d arrived on Tuesday night started having oxygen and blood pressure problems during a plasma exchange. We were camped out in the waiting area in our jim jams and with accompanying attachments (in my case two bags of chemo, my netbook and knitting) by about noon. It turned out that one of the people wearing clothes was actually waiting for the bed of the fellow patient due to go home that afternoon but who was at that moment in time still connected to a bag of blood which resulted in her companion telling a number of people over the phone that ‘No, she hasnt got a bed yet. The woman whose bed she’s having is currently sitting opposite.’

By five I’d decamped to one of the day unit treatment rooms, one fellow patient had managed to successfully get discharged and the other had wangled a side room all to herself. It turned out that she had bug related diarrhoea and the entire room needed cleaning. This entailed my stuff ending up in bags in the shower room while everything, including my cabinet, was deep cleaned (our washing powder smells very nice apparently as per the nurse who packed). Initially we thought I’d be back in the room about eight. Then the sign on the actual door said ‘No Entry until 10.30pm’. By eleven the night nurse had chased up where the cleaners were as the room needed tidying. Seriously it was a mess. I’d thought it would just involve making the beds but chairs and tables were all piled on the beds. I was tucking into a late night Pot Noodle at this point as I couldn’t get comfy with my back on the comfy recliner I was on by then. It then transpired that the button on the deep cleaning machine hadn’t been pressed and it needed to be done again – actually ‘again’s’ not right is it – it needed to be done!

I was provided with a bed in the day room but just couldn’t nod off despite looking forward to going to bed (a term that always amuses B when I use it when in hospital) from getting up that morning. I ended up watching two films and looking at the clock for the last time at four am. I woke up at ten to six as the night staff were about to roll me up the corridor to the ward. It was just as well that I was discharged on Friday as the new patient, even though she said she’d had two hours sleep and was really tired was waaaaaaaaaaaaaay too perky Friday morning. I thought ‘HELP! I’m not going to be able to cope with her first thing in a morning after a good night’s sleep!’

So I’ve been getting flashy lights and other visual disturbances, typical of a migraine, since last week and initially thought this was due to the unusual sleeping pattern but seem to remember reading somewhere about steroids and migraines. I’ve only had a small dose (80mg over eight days) and they finished Friday so if it is related hopefully it should abate shortly.

Generally other than being part comatose I’ve felt okay. I’m still taking anti sickness tablets (Ondansetron and Cyclyzine) and they certainly seem to be doing the job. I’m also being really diligent with the mouth care (mouth wash and Nystatin about four times a day) and so far my tongue is a teeny, tiny bit tender – resulting in me occasionally feeling like I have a lisp – and it looks a bit furry.

Speaking of tender, I have felt tender all over. Kinda like muscle soreness without the benefit of exercising. It’s fine unless I’m touched! I do remember feeling like this when having Doxorubicin this time last year. It’s a lot easier today but I admit when I was half asleep getting out of bed yesterday I gave myself a little start when I thought my dialysis line exit site was sore and then I remembered that everything was sore.

I managed to get my pre Royal-cation ‘To Do’ list done except for one thing – Auntie Ann and Uncle Ray’s Christmas present. What’s frustrating is that I know exactly what I want to get them but can’t find it. Anyhoo one of the items on the list was fabric for backing my Christmas embroideries. I found just what I wanted on ebay…

It arrived last week and B opened it.

B: ‘There was another package.’

Me: ‘Was it fabric?’

B: ‘Yes. Is it cleaning cloth?’

And look even Bud’s not impressed. Mind you with the migrainy eyes I don’t think I’ll be tackling the stripes any time soon.