Tag Archives: bernard

Back in The Royal

Temp went up yesterday. Came in today at two, very quickly through A&E after B phoned the blood ward and they found me an isolation room on another ward.

Feel decidedly ropy but better than last night however throat and upper digestive tract really painful.   Discussed pain relief with both blood docs including the registrar when she called in again on her way home.

One of the ward nurses called in about 9.15 to say the were just short of on antibiotic and I asked about pain relief and she said paracetamol tablets to which I replied there was no way I could swallow them.  She then offered me soluble which makes me barf at the best of times.  After I said no again she said she’d look into it!  Fortunately a much more agreeable lovely nurse just did the medicines round and she’s hooked me up to one, given me a liquid other (that I can have every few hours to get on top of it) and gone to get me very small tablets of a third.  You never know I may even stop drooling on the pillow when I sleep.  I have been prescribed others as well but they are big tablets so might be a bit adventurous.

I also have a skin reaction that the registrar likened to psoriasis.  It’s quite sore on my hands/wrists but also visible on my face, shoulders and round my armpits – it started there last Thursday and my deodorant had done this one before after chemotherapy but not as much as this – especially when I stopped using it.  When it was being discussed with the two docs B started prodding his finger up my short jim jam top sleeve in a completely inept, clumsy and totally unprovocative manner!

The room I’m in on the Infectious Diseases ward is very nice and has its own ensuite shower room however the lovely nurse is moving me later as its a negative pressure room and is not the best room they have since my blood tests have shown I’m neutropenic.

And B got carried away with the phone before we left home, after ringing the blood ward he phoned Auntie Ann to let her know what was happening and she turned up at the ward just minutes after us.  She didn’t tell him she was coming and to be truthful I wouldn’t have phoned her until later as she was supposed to be going to the Magic Rugby League Weekend at Old Trafford, Manchester to watch her team  the Saints play their local rivals, wigan warriors (I daren’t use initial caps just in case she ever saw) and the phoned the friends she was going with and came to see me instead!

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B didn’t waste any time!

After a meeting with one of our consultants, the myeloma nurse, the second ward sister present, refeering I think, me, B, and as circumstances turned out, Auntie Ann and friend Chris T not G, I got home leave until Sunday night.  Let me tell you I was glad to get back for a rest – I have no idea where the weekend went.  I didn’t even have time to get dressed Sunday.  I mean yes, some days I just choose (cba*) not to get dressed, but Sunday I fully intended on putting outside clothes on but it just didn’t pan out and yet I didn’t seem to get that much done.

Anyhoo back to Friday and my return to my usual place of residence.  After him appearing all upset about the current situation I arrived home to find that B had already allowed another bird to move in!  AND if that wasn’t enough Bud was obviously fond of her too.  Okay Bud didn’t actually say so but the fact that he hadn’t tried to eat her speaks volumes.  Here’s the floozy showing off her ass…

I mean I am just basing Bud’s fondness on the fact that he hasn’t invited her to dine with him with her being the main course at least.  I for my part at welcoming her to the family provided access to the greenhouse in case she wanted a dry sheltered spot.

Before

After

B bought some bird seed when he shopped on Saturday and I liberally applied it round the garden included into the green house. Now although I never saw Pigina venture in there herself, the friend that brought me back in to The Royal last night saw her wander in there for some seed. She actually spent Saturday night perched on an upright paving slab near the shed – Pigina that is not Chris G.

Chris thinks Pigina might be at risk of getting eaten by a bird and indeed that’s how she comes to be staying with us in the first place. I however an of the opinion that she flew into the window. I am basing this on the greasy looking pigeon size splatt on the back bedroom window…

It’s about central – you might have to tilt your head at an angle.

Now I have really no idea where the time went at weekend. I had BIG plans and yet didn’t seem to get much done. What I did manage was to finish a Myeloma Buddy I started on Friday.

Gingerbread Buddy

One of the other things I did was a bit of tidying up, now bearing in mind that B tends to let stuff pile up on the dining table while I’m away – heck he attempts to let it build up when I’m at home.

The flowers were kindly given by a neighbour over a week ago – they appear to have kept well!

And look at this item of unsolicited unaddressed post we received…

So where are we with regard to the myeloma well, as a nurse said when she was asking me what the consultant said this afternoon, ‘so really everything is still up in the air’ and basically it is.  I saw an oncologist this morning regarding radiotherapy on my arm, as I thought, but she also mentioned it for treating the myeloma in the spinal fluid.  Chemotherapy injections into the spinal fluid would have to be put on hold whilst the radiotherapy was taking place as the combination would be too toxic.  The doc suggested radiotherapy to either my skull or my skull and spinal cord, I opted for the latter however do not have to make a final decision until later in the week.  There could possibly be one injection before and then they could be recommenced after.  I’ve opted to get a bone marrow biopsy done tomorrow, well I guess that would be today now, Tuesday anyway.

Anyhoo let’s just cut to some good news. Yes we do have some!  I asked about starting overnight peritoneal dialysis today and the PD nurse came for a chat.  Following on from a conversation he’d had earlier with the renal consultant when she came to see me it turned out that they thought the frequency of the PD could be reduced, either by doing it times a day for seven days a week or four times a day but for less days.  I’ve opted for four times a day Monday, Wednesday and Friday with nothing on the others other than draining the overnight fluid off.  I asked B for his opinion when he came in and he, after initially stating that it was up to me, said that Tuesday, Thursday and Saturday would be more practical – and he is of right of course.

I got swabbed today as I’ve been a bit snotty, yesterday and this morning, and may not have thought anything of it but for another couple of patients coughing last week.  I was told it was nothing that should concern me but we’ll see.

The internet is a wonder thing when it works right – I won’t say how many times I tried to post this last night but it wouldn’t play ball.  Hence me sitting here now having my breakfast in my usual half asleep daze thinking ‘Oh yeah I couldn’t keep my eyes open so I left it!’

I really didn’t mean to go on this much and really just wanted to let you know I was still here and actually feeling pretty good.  I did mean to share this last thing however.  I learned something today.  I learned it as I went for a wee just as B arrived back with my singapore chow mein from across the way.  I whizzed (get it whizzed) to the toilet and in my haste to get to the grub was in ‘wee position’ before I took full account of my surroundings.  In fact I was mid wee.  What I learnt was that if you are mid wee and notice something unpalatable on the floor at the side of the toilet then the natural reaction to flinch away from ‘the something’ kicks in before the reaction to ‘stop weeing’!!!!!!!  Fortunately I had plenty of jim jam bottoms.

*  cba – can’t be a&sed

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.’

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.

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.

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.

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.