Surprise Blood Clinic

I finally got two units of blood yesterday and felt fantastic before I went to bed last night but I’ve felt quite tired still today but am now feeling somewhat perkier – not just quite perky, perky, PERKY yet.

I had a surprise blood clinic appointment on Friday. I’d phoned up for one earlier in the week and it was booked for next Friday but we got a phone call on Thursday afternoon changing it to Friday just gone.

The appointment was 11.20 so we got there at about 12.10. Wait, there is a reason for this over and above just tardiness. Most people need a blood test before their appointment and this takes at least an hour to process so if you don’t need one you add an hour to your appointment time – or you end up at reception having a conversation about why you’ve had to wait an additional hour on top of any running late time – with me over hearing it. As it was we waited about three minutes. We’d barely had time to say ‘Hi’ to Sean before we were escorted in by the Prof to meet a new doctor who would then consult back with the Prof if he needed to. I seemed to have more questions than usual so when he got up to ask about the next step in treatment B suggested that he just ask the Prof to come back in whereas I’d have happily let him run to and fro!

The upshot was –

I get to have another dose of DT-PACE in about two weeks when my blood counts have recovered.

I mentioned that I’d had some side effects this time from the dexamethasone. The new doc obviously wasn’t familiar with my ‘JUST SAY NO’ approach to steroids and again I don’t think appreciated just how bad things had been in the past. I felt the need to say that if I’d been sat there two weeks ago and been told about having DT-PACE again I’d have probably been in tears. Prof when he came in said that they’d done their job but they didn’t want them to do any harm and the dose would be reviewed again.

I got two units of blood on Saturday as Prof said in view of my haemoglobin count I could do with some. I have to say I was a bit put out because there’s a note on my renal file to say that my haemoglobin should be kept above 8.0 and it had dropped to 7.9 presumably on a day I didn’t ask about the results (maybe I was too tired) and I didn’t get any the next time I went. So I could have been feeling better sooner. I phoned renal while waiting for my meds in the pharmacy and was told that would be okay but when I got there on Saturday morning I had to go through it again and at one point it was tabled that we could see what my result was before getting it ordered. I must have used the word ‘Prof’ as every other word in an attempt to by-pass this and just get the blood which was just as well as it turned out to be 8.8 so there was no way I would have got any. I then had to say this again later. As it was the lab had to do the cross match manually so in order to get both units dialysis had to be extended by 40 minutes. The sister on the dialysis unit on Saturday also said I’d be in an isolation room this coming week as my neutrophils were below 2.0. Now I had thought it was if they were below 1.0 as although technically neutropenia starts below 2.0 it’s only classed as mild risk of infection at that point, moderate starting below 1.0 and severe starts at 0.5. So I should have been in isolation for the past week.  My neutrophils on Saturday were 0.9 so they had dropped a little bit further but my platelets had gone up to 238 which is well above the normal lower range of 150.

I got questioned about temps, shivers, chills in light of my neutrophils and white blood counts but was able to say that apart from the slight bleep last Sunday there hadn’t been anything. Except I forget that I’d get a ‘bite’ on my right boob – minds out of the gutter people – it’s like an insect bite. How did I forget? Well it hasn’t bothered me apart from Wednesday night when I first noticed it when it was a bit itchy or when I have a shower and notice it again – which was how I remembered on Friday tea time that I’d forgotten it. I’ve been keeping an eye on it since and it seems to have settled down but I won’t hesitate to flash it at somebody (preferably in the medical profession) if it turns iffy.

After all we learned about peritoneal dialysis I don’t get to put it into practice – at the moment – due to the increased risk of infection during chemotherapy. I was a soupcon disappointed to say the least but obviously could see the sense and the issue of the time I spend away from home on dialysis days has been resolved somewhat this afternoon when our next door neighbours (who have given me a lift to and/or from the Royal previously) said they were happy to collect me on Tuesdays and Thursdays if B dropped me off. When I asked if she was sure, she said apparently they consider I’m way better off getting home, having a cup of tea and settling down for the afternoon than hanging about waiting. B has been picking me up on a Saturday anyway but will now drop me off instead.

Oh and I had broached the subject with B last night of driving myself in on Tuesday (since I felt good and was anticipating feeling even better by then) as I really wanted to go to Armchair Yoga on Tuesday afternoon. Initially or that should probably be straight away practically before I’d finished speaking B said ‘NO’ but then when he’d had a little think about it and I’d said that I wouldn’t do it if I didn’t feel up to it he said ‘Well, okay, as I’ve not yet had the bumps and scraps fixed yet it won’t matter if you do another one.’ So B probably had to fight the urge to run round the garden wall and hug our neighbour in relief.

I’ll be referred to the Transplant Team in relation to a donor stem cell transplant.

And other than getting a prescription for things I was running out of that was basically it. It was good to note that the pharmacy still think a four week s`upply of paracetamol and Tramadol is 32 and 30 respectively. I have no idea why this is but everything else I got four weeks worth of but as before these two only get issued in one box lots. We did however get a free carrier bag as requested by B as I’d walked out of the house with my knitting and myeloma notebook and pencil in my arms without putting them in anything. He has pointed out that my memory isn’t what it used to be – I blame the medication which is appropriate because I’d forgotten to take it all on Thursday night!

I was lying in bed wondering why my back was so cranky and started working out how long it was since I’d taken the night time painkillers when I realised that I didn’t think I had. I definitely didn’t remember taking the Thalidomide which are kinda doubly locked in so have to burst through foil and cardboard. I did remember that it was a new box that night so it would be easy to confirm so I got out of bed, went down to the kitchen, lifted out the box of meds, took out the Thalidomide box and… no, I hadn’t taken them. As I didn’t want to overdose on paracetamol I only took a Tramadol just in case but what I think happened was this – I went into the kitchen and popped four Calcichew into my mouth which, as the name suggests, need chewing, whilst chewing I thought I might as well take my temperature and then remembered something I needed to ask about in clinic and went through to the dining room where I’d left my notebook handy in case of such occurrences and wrote it down. I then went back into the kitchen, put the thermometer back in the box, put the box back in the cupboard and made a cup of chamomile tea. If I’m distracted from something there’s a huge chance I’ll forget what I was distracted from.

And then we went and had fish, chips and mushy peas at the nearby Sotos and bought a pan so lovely it deserves a post of it’s own.

Peritoneal Dialysis Part 2

Bud had rump steak for his breakfast so I think we can safely say he felt better today. He did throw up last night just as he was heading for his pre-bed wee. If I’d been quicker I could have got the kitchen roll underneath it. Fortunately B was quicker at passing me the sick bowl after my first mouthful of food at tea time. I then got a look when I answered in the negative to the question ‘Have you had any anti-sickness today?’. I had felt a teeny bit ropy at lunch but it passed and I was able to carry on with my watercress bap so I thought I’d give the tablets a miss.

So back to the PD –

the chance of infection does increase with the use of PD as compared to the use of a neck line. The glucose rich fluid and its warm temperature is kinda a holiday heaven for bacteria. Infections however are a risk with any line and the antibiotic line lock used in the renal line reduces the infection rate by 80%, these locks aren’t used with Hickman or PICC lines so by that comparison they would also have a greater incidence of infection and I wouldn’t hesitate at having one of them. The glucose fluid isn’t as sweet as the one previously used

baths are out as sitting in dirty water isn’t good for the cleanliness of the line. Some people do have very shallow baths but where’s the fun in that? Swimming however is not only allowed but encouraged. A waterproof dressing is popped over the exit/entrance site (I can’t decide if it’s where the line comes out or goes in) and then removed and showered down as soon as out of the water. The chemicals in the pool keeping it clear of bacteria – but what about other people’s wee?

the line itself is inserted under either general or local anaesthetic. I said that I’d prefer local. It’s not that I’m looking forward to it but I can’t say I’d be head of the queue to voluntarily have any type of line fitted. I’m okay when it’s happening but get a tad anxious before hand – more the thought than anything. However with the local there’s the added bonus of IV tranquiliser which will be a first and I understand that general generally carries more complications than the procedures it’s used for

PD is only recommended for five years. Someone has been having it for 12 but this has been his choice and he is aware of the recommendations. Apparently it came to light that it can make things inside squishy and more prone to infection after a certain time so a time period had to be be put on it and it was five years

if the line gets infected then it’s a case of antibiotics, removal of the line and then a new one can be put in approximately six weeks later

and the final consideration is storage. A 30 day supply of the bags of fluid amount to about 6′ x 4′ x 4′. B has suggested they go in the garage which would be acceptable or a shed will be provided to go in the garden. The only thing being that if the weather was really cold a week’s supply would need to be brought into the house as the machine doesn’t like cold fluid. B is also now wondering if we can get two weeks’ worth delivered direct to wherever we go on holiday as he doesn’t think there’d be room in the car for us three, out luggage and the boxes. It has been suggested that he just stick a trailer on the back of the car – not by me – and that went down like a lead balloon

So the nurse has added me to the list and I’ll wait to hear about getting the line put in and then once it has settled and healed round the fuzzy bits that secure it I’ll spend up to a week being showed at the hospital how to do it both with the machine and manually.

I can’t wait, I’m already thinking ‘Will I sleep tonight?’ knowing that I have to get up early in the morning. I’d need to call into the Blood Day Unit for blood tests as required whereas these are taken on dialysis now but that’s no hardship and I know that if my haemoglobin was 8.0 as it was on Saturday I’d get some blood that day, on renal however it was reviewed by a doctor and I may or may not get some tomorrow depending on what they say then. (They don’t routinely transfuse they tend to try stimulating the body’s production – which doesn’t provide the nice quick fix of getting some fresh HB rich blood.) The HB level certainly explained why I felt so listless on Saturday morning even after a nap. I didn’t do much else for the rest of the day but I have felt less tired yesterday and today – maybe because I knew so haven’t pushed doing anything but did manage to go for a walk with B and Bud. My platelets had also come down to 101 and my neutrophils were 1.6. B was a tad worried that my counts had gone down instead of continuing the upward trend.

Yesterday I had a couple of low grade temperature readings 37.6 degrees celsius (99.68 fahrenheit) and 37.4 degrees celsius (99.32 fahrenheit) from morning through to afternoon but by tea time it had settled back to 37.0 degrees celsius (98.6 fahrenheit) and it’s been fine today. Where my line goes in/comes out the site has been a little red but I had it swabbed two weeks ago and nothing showed up and it’s not changed since.

Hopefully I’ll get a couple of units of blood tomorrow and be full of beans by Wednesday.

Oh, and when I said Bud was feeling better – he is but it’s done nothing for the odour he’s been producing – we’re lucky it hasn’t made the paint peel.

Deja Vu DT-PACE

Yesterday we went to our clinic appointment to find out how things were going. We bumped into Sean in the waiting area, which is always nice, along with a couple of ladies who also have myeloma. As it turned out the results of the bone marrow biopsy weren’t back but other results were and a plan for the next step had been formulated.

My blood counts are measured once a week at the moment. The blood is taken while I’m having dialysis and this means I don’t need to be stuck with a needle – which is always a plus. So my blood results from Tuesday (24 January) were –
haemoglobin – 8.3 (normal range 11.8 – 14.8 for women) This would explain why, although I’m feeling better, I don’t feel completely like the energiser bunny. In renal they don’t routinely give blood to increase haemoglobin, they use ARANESP which promotes an increase in the production of red blood cells. It takes longer to have an effect than a transfusion but apparently if you’re on the kidney transplant list the use of blood can cause issues with antibodies. The doc said that haemoglobin is usually the last count to get back to normal. Today it had gone up to 8.6.

WBC – 4.3 (normal range 3.5 – 11.0)

Platelets- 451 (normal range 150 – 400) B was bothered by this and, despite me having told him that the normal range went up to 400, kept asking me to check and even when I did double check with a print off of blood results straight from the hospital he still asked the doctor yesterday – mind you the doctor said 350 so B probably won’t believe me in future anyway – he’d already asked whether I’d written the number down wrong. Fortunately I was able to point out that a nurse wrote the figures down for me. It turns out that the increase is likely due to dialysis and is nothing to worry about.

Although the results of the bone marrow trephine were not back, the aspirate sample not being measurable (which has happened before), the paraprotein result as at 19 January was *drum roll please* – ‘no detectable paraprotein found’. My IGA level (the type of myeloma I have) was previously 24.09 and at the 19th was 0.37 which is actually slightly below the normal range of 0.8 – 2.8.  And I’ll be tissue typed with regard to a donor transplant.

So I get to have another course of DT-PACE possibly starting this week. My name will go on the board and when a bed is available I’ll get a call. This week!! If I’ve not heard anything by Wednesday or Thursday I need to give them a ring. This week!!! Now despite having spent nearly 10 weeks vacationing away from home last year this is only the second time I’ve had prior notice of going into hospital – the first time being my stem cell transplant in 2010. This of course has produced a…

To Do List

Ring ASDA re the claim for Buddy’s allergy treatment – which they have declined as they didn’t receive some information from the vet along with declining a second one sent which was below the excess. Now I thought because it all related to allergy treatment they would have just tagged it on and as the total bills are around £1,000 it really needs sorting

Download films/games to netbook

Buy pyjamas – because they always come in handy?!?!? Although B wouldn’t even contemplate a trip to Primark yesterday

Buy sponge

Connect the xbox to the internet – essential of course

Buy small fridge – the lady in the next bed in June had a little fridge which I have to admit at the time I thought was more hassle just bringing it than it was worth in, but realised in November/December that they are actually really handy to completely avoid warm yoghurts and milk going off

Buy some soft bras along the lines of the ‘ahh bra’ I saw advertised – because it’s so uncomfy to sleep in a regular bra BUT and that’s a big BUT there’s always the issue of being attached to stuff which makes it impossible to change in and out of bras (or tops) as easily as usual. Plus when you get plucked from your bed for dialysis in the early hours without warning it would avoid having to sit with a blanket clutched around your bosom (or barms as I learnt they could be called yesterday) because you were half asleep when collected and neglected to register that the short sleeve pale jim jam top was wholly unsuitable for public consumption

Buy badger lip balm – my lips went all peely last time. They have some lovely interesting flavours – pink grapefruit, lavender and mint – but I went for unscented in case some of the interesting loveliness made me puke.

Buy shower gel

Buy material – despite going to the fabric shop, Abakhan, yesterday (we didn’t walk, we parked closer) nothing jumped out and said ‘Use me to back your Christmas embroideries’. What do you mean ‘This could wait’?

Send three emails I’m behind with

Make soup – I’m not really a big fan of tinned soup and considering how my mouth went last time I started thinking that homemade soup would be a good idea. B could then heat it up and bring it in – when I floated this past him last night he didn’t think it was as good idea as I thought and as I discussed it with him I realised that when my mouth was sore I didn’t really eat much of anything so I’m not too sure how good an idea it was not even considering that when Auntie Ann and B brought soup in I returned it

Make pasta sauce – see above

Order B’s facewash

Make a decision and order Auntie Ann and Uncle Ray’s Christmas present – one of the last I need to sort out

Send one of the Christmas presents I have got

Pay credit card bill

Buy new laptop – Currys have admitted ours can’t be located so are giving us enough to buy a similar spec one. Of all the things on my list B was so taken with this one he planned to go this morning but then remembered that I had dialysis and Auntie Ann is visiting this afternoon so he’ll either be pushing her out of the door or I have a feeling we’ll be going tomorrow

Sort out a knitting pattern – I quite fancy something wearable for me, but it would need to be uncomplicated due to potential lack of concentration so nothing multicoloured as the four colours on a row were too much last time

Buy wool for knitting pattern

Take before and after photos – When I said this to B yesterday he looked at me quizzically ‘Not of me.’ I said ‘Of the dining table’ because by the time I get home it’s usually hard to tell what colour it is for the piles of post and other miscellaneous detritus

Check dates new series are starting on Sky and add to planner – ohhh, two start when I’m potentially away so I’ll need to remember to remind B (if we get a laptop I’ve told him I can email him requests) but with the new HD box which has a gazillion hours of storage he won’t be asking me this time what can be deleted. BUT if I got him to run an extension down to the lounge so that we could hook the Sky box to the phone line (don’t tell Sky as permenant connection to a phone line is part of the contractual requirements) I could set recordings from my bed. I think we’ve got everything he’d need – drill – check, bit long enough to fit through cavity wall – check, extension cable – check, enthusiasm – ch… well, what do you reckon? And I think I forgot to mention that when I order the new box we also go £100 of Marks and Spencer’s vouchers which more than covered the cost of the box. We very rarely shop there mind but that’s not the point when they’re free

Take library books back – I’ve only had them since September. Don’t worry I’ve renewed them so it’s not as if I’ll need a bank loan to pay the fines

Get new book to read – if they’ll let me have anymore

And… no wait, I think that’s actually it. No it’s not I now have a new one. I made a pram/cot blanket for one of the health care assistants last week and one of the nurses asked about one today. After initially declining I thought, well it’s easy and would give me something to do before going in to stop me adding to the ‘To Do List’ and she’s happy to wash it herself if I finish it whilst I’m in. Never one to miss an opportunity to show off my handiwork here it is…

Double knitting yarn on 4.5mm hook using daisy pattern it measured 75 cm x 94 cm.

Now I have actually done two and a half of them already. There’s nothing like a bit of pressure to make one get one’s finger out but how did I manage a half? Well I rang ASDA about the information they needed from the vet but neglected to ask them about the second claim. Doh!

A Non Bare Bear

Darn, as Ernie pointed out I missed a prime opportunity in the title of my previous post when I could have gone with a play on a Bare Bear!  Anyhoo said bear is now fully clothed – well nearly.  Although he looks fully attired his goggles need a press stud and are just tied on and his little jacket needs an open ended zip/zipper.

Oh, and his jodphurs require a bit of white shirring elastic but other than thathe’s fully dressed!  The pattern is again from Teddy Bears: More Than 25 Irresistible Designs for Knitted Bears by Debbie Bliss.

As you can clearly see I got the loopy knitting finished whilst at the hospital yesterday.  I did have to adjust the pattern as keeping to the instructions was only sending me loopy not the yarn.  In fact I also managed to reknit the goggles as the first pair were 12cm/4.76″ short.  And then I ran out of knitting, seriously I had nothing left to do, no book to read, I did write out my Christmas present list again, got about five cups of water (they are very small cups) and went for a wee – which was a feat in itself let me tell you due completely to my choice of attire – and then fortunately my Auntie Ann appeared – but back to my clothing.  

When we have an appointment with a doctor/prof at the clinic I make at least half an effort (although they may disagree) due to the fact that, as you may recall, we go into Liverpool for a meal but when I go to the Day Unit, for treatment or when I’m feeling ruff, I go casual to the point of completely un-ironed in some instances.  So yesterday morning I was all of a do-da – an appointment with the Prof but in the Day Unit – what to wear? Anyhoo, the decision was made for me – I ironed a pair of trousers only to find I didn’t have a suitable clean t-shirt so I ended up wearing a dress with tights.  I also ended up getting two units of blood and let me tell you, if you don’t already know, it is quite a performance dealing with tights while you have a cannula in the back of one of your hands – but I’m getting ahead of myself.

I got there at 10.50am for my 11 o’clock appointment – I was early as B wasn’t involved, my Uncle Ray provided transportation.  I saw the Prof and he asked me how I was.  I said I didn’t feel ill but had been tired – and he said yes I would be because I was anemic.  So I got to have two units of blood – I could have gone back today but whilst I was already there I said I might as well stay plus if I did I’d feel better sooner.

Due to my haemoglobin count (7.6 – normal min for women 11.8), white blood count (2.6 – min 3.5) and neutrophils (1.00 – min 2.0) the next cycle of Revlimid has been delayed.  I go back to the clinic a week tomorrow (11 November) and will, hopefully, start cycle two then but this may be reduced to 10mg every other day or 5mg a day.  On the upside my kidney function has improved again and my PP (I think rather than my IgA – you’d think I’d know definitely wouldn’t you) has gone from 15 to 10! We’ll just need to wait until my next bone marrow biopsy to see if it affects (ie, squashes and stomps on) the plasma cell content of the bone marrow.

My appetite was better yesterday I’d managed half a sandwich for my lunch with a bag of french fries (which are a crisp/chip) and for tea I’d been craving spag bol (which is so much easier to type than spaghetti bolognese).  Due to the tiredness I fortunately hadn’t decided to make this from scratch so B had got a ready made jar to go with some mince. However subtle hints to B on the phone such as ‘Are you going to make the bolognese?’ hadn’t worked so I got home at 9.10pm (hence my Auntie Ann collecting me as B had gone to work) to find the meal still in kit form.  And you know what I did – I made it!

I’m not going to say it was without incident – I ended up with about a quarter of the spaghetti I started with due to a colander and sink incident – but I really enjoyed.

I’d done the mince and the sauce before going upstairs for a shower and realised we had a couple of phone messages.  So I had a quick shower, put the pasta on and phoned one of my friends back and had to do something I rarely do, I had to say I couldn’t stay on the phone long as I was cooking pasta.  When she called round this afternoon she said she got off the phone and said to herself ‘She’s been out nearly all day, she’s not been home long, it’s 10 o’clock at night, did she really just say she was cooking pasta?’ but apparently I looked and sounded a lot better today – totally like someone who could deal with cooking pasta at that time of night!

More creative spaces can be found here.

And yet another impromptu holiday

If I had a creative space this week it would involve 14 stitches of double knit yarn on size 2.75mm needles which will hopefully be a sole for a second teddy bear.   (I can now confirm that they are indeed a whole sole, there has been a brief interlude of several hundred hours I think between starting this this morning and finishing it now.) I started the knitting on Tuesday at the Royal.  I had woken up in the early hours feeling quite warm, with a raging thirst, slight nosebleed and the belief that the lap top was on the bed behind me and was the size of our new BIG plasma TV!  When I awoke at 7:00 I was able to confirm from the few drops of blood on my jim jam top that I’d only imagined the laptop part of things.  I staggered downstairs to take my temperature and it was 39.7!  I got a cold drink, left B a note and staggered back upstairs to bed relieved I didn’t have a giant laptop to move.

Of all the days to spike a temp Tuesday was the most inconvenient day ever – B had gone to the m-i-l’s on the way home with her shopping, our earlier riser neighbours are on holiday, Chris had a cold and Uncle Ray takes his elderly Auntie shopping.  Auntie Ann said later I should have rung her and she would have come for me even if it made her late for work and even though it was payroll day for hundreds of people and she’s the only one who does it!  They do keep saying they should train someone else.

So B came home, I got dressed, well dressed in a yesterday’s crumpled linen pants, an un-ironed slightly holey T-shirt, stripy socks and sandals kinda way, and off we went with B depositing me at the Royal at 9:15.

My temp was 38 something, I had bloods taken and blood cultures and then saw a doctor, found out I needed two units of blood as HB had dropped from 9.0 on Friday to 7.6, had to give in and ask if I could I get back on the examination bed for a sleep, went for a chest x-ray at 15:40 (just as B rang to find out what was going on) and getting back at 17:00 after my form had been lost and then, despite the best efforts of the guy on the reception desk, getting overlooked several times by porters looking for return fares.  There was also the perilous risk that my nodding head could have come into contact with my very sharp needles which were in my bag on my lap and I could have trepanned myself.

Fortunately the lady who was in the neighbouring bed in June was in the day unit and had to stay late for her two units of blood and as she’s also a fellow knitter that helped pass the time I was awake.  Plus her niece makes a good cup of tea.

B turned up at 19:30 and went at 20:20, after Auntie Ann, and just after we got to the Pancreatic-something else ward where I had a chair and a space.  A bed was located shortly after!

Tuesday night, there were 39.1 temps, oxygen due to low SATS (85), antibiotics, fluids due to low blood pressure, a stinging cannula, six attempts to get a new one in at 2:30 in the morning while I wittered on about Bud and his allergies because I needed a distraction from the stabbing being done by someone who was based on that ward but covered the whole hospital if anyone needed assistance getting access (who rashly said she’d get two in, one for the fluids and one for the blood – she settled for one – and no I don’t mean getting in the front door).

Wednesday no knitting was even considered.  The laptop that B had begrudgingly brought in remained in the bag, I read a bit and slept a lot and ate a little, with more blood, fluids, temps and antibiotics.  I was allowed a shower (look, its relevant later).  I felt somewhat better but tired and a long way from usual.  The elderly lady (94) in the next but one bed was very, shall we say, lively, during the day.  The elderly lady in the next but one bed was very, shall we say, no, extremely, no, EXTREMELY bloomin’ annoying during the night.

Second stay put cannula became ‘knackered’ – technical term used by nurse.  Blood for cultures needed and blood doctor said I should ask for these to be taken when new cannula fitted.  Young male nurse turned up just to take blood, I mentioned access, he looked at holes in right arm and went to get someone else.  She said she’d give it a go if I was okay with it.  I was, she did and off she went to call in a favour.  What I now understand was a Nurse Practitioner turned up and despite me pointing out that blue cannuals are normally used, she gave it a go with a pink one and, begrudging as the flow was, managed to get enough blood for the cultures through the cannula.  I admit it was toe curling for a few seconds going in but it’s still there and receiving a flush as I type.

The early hours of Thursday there were fluids, low blood pressure, antibiotics and me at 06:00 thinking that maybe the people Logan on Logan’s Run was escaping from had the right idea!  WHAT!  You try being dog tired, and despite being able to get back to sleep after being poked and prodded and pressured being woken up by ‘Nora’ asking what time it was, could she have a cup of tea, she’d settle for some cornflakes, she usually had bacon and egg but cornflakes would be okay as she hadn’t had anything to eat all day as she’d had a job done, what time it was, was there a toilet in the nearby cupboard, when was the doctor going to see her, the young girl in the opposite bed should be out at work or in her own bed, shouting help when she couldn’t find the buzzer to ask the same thing, telling the nurse that stroking her hair wasn’t going to do any good, how old was the health care assistant, why didn’t she want to be a proper nurse, why had they been so long, when was she getting her dinner at 11:00, 1:00, 2:00, and 6:00 specifically (I think she may have been nocturnal – because most of the time although she repeated herself 650 times most of the questions weren’t a million miles from coherent) except for my favourite, which if I hadn’t been extremely sleep deprived I would have thought hysterical – ‘Where’s my plunger?’

Although I over-heard she had trapped wind and her son told her they were going to use a plunger to get it out – so even that wasn’t completely off the wall.  She slept coma-like until 16:30 today, sleeping through her son’s two minute visit, because apparently when she was like that there was no chance of waking her up, then went from 0-60 in about 0.30 seconds ie, asleep to  ‘What time is it?’ Getting answers from four of us at one point and then demanding more cornflakes.

I have felt better this afternoon and this evening and hopefully with a good night’s sleep will feel better again tomorrow.  Still on the antibiotics, temp low 37s though, blood pressure raising, having liver scan as readings whacky – but they did do that in June following sepsis and then returned to normal range and kidney readings slightly out of normal range – but I have no pain in that region so unlikely to be kidney infection.

Fortunately I made it up to 7Y this evening which feels like staying with a nice Auntie you know well and that knows you well, as opposed to 5B where, although the young Auntie and cousins are nice, some crazy old maiden aunt turns up and refuses to disconnect you from your fluids while you have a shower (as it’s been HOT and you’ve had a window seat and have basically been doing the whole pig on the way to the abattoir thing) and when you push it by saying it’s just a bag of saline, she says it’s ward policy even though ward policy allowed it the previous day and then you get all teary and homesick.  And what makes it worse is that when that maiden aunt takes you back to nice Auntie she tells her you’ve been no trouble!  Well of course you haven’t because you only asked for two things, the other being a jug of cold water with ice if possible, and you didn’t get either!

Go Neutrophils! And a pair of sunglasses and a pancake pan

Yesterday my neutrophils were… I tell you what let’s have a look at all my most important-est blood counts

Haemoglobin – Friday 10.7 / Monday 10.2

Platelets – Friday 159 / Monday 114  (and if anyone can tell me how to tab on wordpress I would be very grateful)

White Blood Count – Friday 1.9 / Monday 1.0

Neutrophils – Friday 0.9 / Monday 0.4

At 0.9 it’s just 0.1 away from being in the non neutropenic category completely and 0.5 above severely neutropenic which meant we could go out for lunch.  We went back to the Mexican that we’d abandoned last time in search of a Chinese that didn’t exist.  I had BBQ ribs and they were good.  B had his usual Cajun chicken.  Having the ribs made me realise there are two sets of people in the world (presumably or it could be a quaint English/British thing) those that will eat messy food in public and those who won’t.  I have friends who won’t go near spaghetti bolognese in public.

As we have established I don’t eat that much meat so am no regular to chowing down on ribs in a restaurant with my sleeves rolled up, BBQ sauce up my nose, enough paper napkins to wallpaper our lounge and an inappropriately small finger bowl, however when the ribs called out to me from the me’n’u like yesterday I didn’t think ‘No, that would be awkward to eat and potentially embarrassing I won’t get it.’ I thought ‘Mmmmm, ribs.’ with a slight amount of drooling.  That said I was kinda glad the restaurant wasn’t packed when I had to do a furtive check to see if I had sauce on my left boob – well, not my actual…oh, you know what I mean, the dress material over said area.

And then I got a migraine, which did buy me a much needed pair of sunglasses. It was a lovely BRIGHT day (very warm in the sun, very cool in the shade) and that much have triggered a fairly, oh who am I kidding, it was a bit of a stinker of a headache.  When we got home (I didn’t feel up to knitting on the way back) I took 1g paracetamol and 60mg of codeine, double the amount I now take for bone pain, and it did ease quite a bit, enough that I could read during a relaxing bath.  Although relaxing in the bath takes on a whole new concept when you have a PICC line in your upper arm that needs to stay dry.

I’m pretty sure it was light triggered as when I tried to use the computer later it started up again and I had to request lamps on in the lounge rather than the ‘big light’.  I took the same dose of painkillers then and again this morning so it’s down to a tolerable background looming round my right eye.

I’m now off to give B another nudge as he’s getting out of bed at 9:00 (currently 9:56) and I’m going to make pancakes on my new pancake pan – also bought by the migraine which just wanted to get the pan and go home.  We both waited with bated breath when I said to B whilst in the queue ‘Is there anywhere else you want to go?’ knowing there was a 99% chance there wasn’t but neither the migraine or me wanted to look like a killjoy.

I just realised that the only two ailments I have have the sound ‘my’* at the beginning maybe I should make enquiries about any others just in case.

*And yes I know some people pronounce migraine as ‘megrain’ but even so it’s still all about me!

 

 

 

Clinics and Plays

Friday off we popped for more Velcade (day 8 of the cycle) and arrived at the Day Unit to

‘Have you been to clinic?’ from the very nice young man on reception as I was barely through the door.

Head shake from me.

‘Did you know you had a clinic appointment?’

Further shaking of head.

One of the nurses took blood from my line and off I went with my little sample down to clinic after ensuring that the very nice young man on reception would point B in the right direction.

The doctor we finally saw was new to us.  I had seen her about but we’d never had the pleasure of a consultant.

My blood counts were

Haemoglobin – 10.8 (normal range 11.8 – 14.8)

White blood cells – 1.6 (normal range 3.5 – 11.0)

Platelets – 66 (normal range 150 – 400)

Neutrophils – 0.9 (normal range 2.0 – 7.5)

The haemoglobin increase from 7.9 on Monday obviously explains why I have felt so much better since the two units of blood on Tuesday.  Oh and I haven’t had a temperature spike since Tuesday either!

I got some  more Odanestron anti sickness meds which certainly seem to do the job in managing the little bit of queasiness I’ve been getting, and it is only a little bit – but enough to put me off food!

New to us lady doc also informed us of my bone marrow biopsy results – it was high.  Yes, it was high, I didn’t ask for a percentage and if one had been offered I would probably have stuck my fingers in my ears and LA LA’ed.  I generally want to know everything however this is one thing I have, as yet, no desire to find out.  I’m not even keen on seeing other peoples’ percentages and I think I know why.  With the paraprotein level there’s no lid on it but with a percentage there is a cap of 100 and I can cope with high but am not at all too sure how I’d feel about knowing an actual figure in say, the 80s or (gulp) higher.  So you’ll all have to just go with high too!

Back we went to the Day Unit for the Velcade and having it flushed through caused me an issue – how is it possible my PICC line is above my elbow so in theory I should be able to bend my arm to my heart’s content whilst getting stuff in and it shouldn’t affect the flow – not on Friday.  If I bent my arm to knit the flow slowed down.  I thought I was imagining it and then the nurse noticed and after several go’s of ‘arm straight’, ‘arm bent’ it had to be straight so I couldn’t knit – oh, the humanity.

Then we went out for lunch thanks to Odanestron and after went and ordered the ever so comfy chair for me from John Lewis, where the price had gone up, B made the young male shop assistant go red whilst asking for a discount (as the choice of leather to match the new settee pushed the price up as well) and I stopped him short of speaking to the manager.  As it turned out there was another lady buying the chair at the same time and she did demand the manager.  I don’t think she got anywhere and with the number of times B has mentioned it since I should have let him speak to the manager too.

We didn’t have time to get yarn for my big fat size 19mm knitting needle and 5mm crochet hook – and yes as per Fiona’s use of the same size needle it is for broomstick lace!

After getting home at 18:00 I went to a play at the theatre in Wigan at 19:00 which one of the chaps from armchair yoga was in.  Admittedly the content was a bit of a surprise since somehow I’d forgotten what it was called and thought it was a comedy and it turned out to be Agatha Christie’s Witness for the Prosecution!  It was very good however.

It’s no wonder I slept in until 10:00 this morning but today I’ve managed to turn the clean washing pile back into the ironing pile and get it ironed – it’s amazing how far you can get on two units of someone else’s blood!