Category Archives: Kidneys

Sausage Hands

My neutrophils are none existent as an unexpected result of the methotrexate.  I’ll keep this short, what do you mean thank goodness – as it’s really hard to type with these sore sausages that have temporarily taken the place of my fingers.  I still have my own skin but someone about five times bigger is borrowing it.  They’re not as sore as yesterday and some movement is easier but I can’t knit, if I felt compelled and B is having to help me in the shower.

I’m still in infectious diseases with a fridge which is good but would be a whole lot better if I could actually drink a whole bunch of COLLLLLLLLLLLLLLLD stuff.   After discussion of a morphine syringe driver yesterday one was prescribed – well a syringe driver that is but it was for anti-sickness only and I’ve never complained of it.  I can only think one/more of the nurses had said this but I’m not sick it’s just that if I attempt to drink something and my throat doesn’t like it I start to choke but just that bit comes back along my maybe some thick gloopy drool – just like at night.  A doc had prescribed the morphine driver on Monday (when I mostly slept) and then yesterday another one said that I’d not really made use of the meds on offer (may be because I’d slept) and I should give them a go and see how it went.  So I did and by the end of the day I managed a yoghurt, my tablets in mostly soluble form and even a little fizzy drink – very little and not without reaction.  I tried again today but the thing is that despite asking yesterday I had five mouthfuls of good stuff out of a possible seven and today seven out of a possible eleven and although I started off well, with an ice lolly for breakfast I found my nice slimy tinned peaches for supper were too rough – so next to nothing is getting down.  Needless to say I think I may be better off with the syringe driver for a bit.

One of the kidney docs called round this morning took one look at me and offered help with dialysis.  It took place within the hour and then he came back later and said due to the risk of infection I could have a couple of days off anyway.

And I’m so  parched I’m sure I could watch a Titanic documentary and think as they hit the sea ‘the jammy so and sos all that cold cold water and ice!’

The beauty of it

The whole aim of attempting to post on Monday was to basically confirm that I was still ‘here’.  However it didn’t exactly pan out – I mean I am still here but the posting bit wasn’t as easy.  So I when I managed to get it to post yesterday I thought that I would make sure I posted every day even if what I posted had no relevance whatsoever to my current medical status.  I fully intended to start today, mind you I fully intended to be the first of the three of us on the six bed bay  to have a shower today and I ended up being third and possibly missing the docs’ ward round as a consequence.

So I’d fully intended to tell you today about why my visitors yesterday looked like this…

(I was swabbed on Monday and tested positive for para flu yesterday – caught from another patient last week I’ll have you know and not from one of my visitors), who thought that the visiting myeloma consultant was a vicar who was in with us so long he must have been trying to flog me something and possibly a little something on suggested treatment.  I was going to do this before I went to Clatterbridge (a hospital just under 14 miles away) for a planning appointment relating to radiotherapy.  Needless to say I didn’t get it done before I was collected at about 1.20 pm.  I’d just, so just I had just emptied my bag of ‘out’ fluid down the sluice) finished my peritoneal dialysis (PD) fluid exchange and hadn’t even packed for my little trip out.  I went for a wee and threw some knitting, sweets and a puzzle book into a bag and set off wearing a mask – to protect other people from me.

We arrived at ten to two for my appointment at half two.  I was shown to a little office, to keep me away from the other patients and staff and well, everybody, and shut in.  As it turned out I ended up speaking to the oncologist from there that I’d seen on Monday at the Royal as she called in for a quick chat when she saw me as she was passing.  The door wasn’t initially shut.

After that I waited, knit, waited, threw up – in the sick bowl I’d brought, on my knitting, carrier bag, the chair, the floor, my cardy and my right trouser leg, waited, waited and waited with this to look at on the back of the door…

There were other more graphic drawings of the male doings but I thought everyone should know where the prostate is and how to poke it.  I had finally got planned – which involved a warm plastic piece of flat plastic being formed into a mask over my tilted back face, flashing my bare bosoms to the three radiographers and being asked questions I couldn’t really answer as with the warm flannel like plastic over my face I daren’t shake/nod my head and couldn’t speak.

I made it back to ‘the room’ in my mask at five oh four pm just as B was ringing me and was offered a drink and biscuits.  This is what I got…

Now I fully admit it could be my smutty mind but that is exactly how those buscuits were on the paper towel.  Either its my smutty mind or I wasn’t the only one who’d spent long hours looking at the back of the office door.

Because of the para flu I ended up coming back in an ambulance which was order for ‘within the hour’.  I got back to The Royal at eight by which time B had gone back home, got changed and called back in, ready for work and my Auntie Ann had waited over an hour as I think she’d thought I’d forgotten to let her know I was back but was way too polite to say so.

And now I have to go to sleep because I’ve just completed my fourth PD exchange of the day – the schedule of which was thrown well out of whack by the afternoon outing – ‘Did you have a good time out girl?’ the elderly lady opposite asked me when I got back – I can barely keep my eyes open but needed to do exactly that while I did the bed time one.  Just as well because I’d been made some toast and cheese spread, the lady in the next bed had accepted the offer but the elderly lady had said no and then asked where her’s was when the health care assistant came back with it – so she got some too – and during the exchange mine made an encore appearance.  I’d blamed the half a bowl of mushroom-y, in a very loose sense, soup at lunch time but maybe it was the intrathecal injection I had yesterday after all.

So tomorrow I may tell you about where we are up to with suggested treatment or I may just show you my knitting.  Don’t panic I threw away the first lot of knitting that got sick on it and fortunately declined the offer of a pasta carbonara from the freezer and settled for toast so it wasn’t too unpalatable coming back.  And now off to get some beauty sleep because, as my husband informed me today, I need it.  This being the reason why I sleep more than him even at the best of times.

Oh, oh and I nearly forgot, that’s how asleep I am, but we had some good news on Monday.  I can reduce the amount of PD I do.  Either my reducing the number of exchanges in a day or the number of days I do exchanges in the week.  I went for Monday, Wednesday and Friday dialysing and Tuesday, Thursday, Saturday and Sunday off.  I knew this would need verifying by B and indeed after initially saying ‘Whatever you think’ went on to say ‘Tuesday, Thursday, Saturday would be better to do exchanges’ because of appointments on Monday, Wednesday and Friday.

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

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.

Aside

I have to say I surprised even myself by getting this jacket finished in time for today.  I then un-surprised myself by forgetting it was in the washing machine last night but fortunately remembered just as I was going to bed, popped … Continue reading