Out of Sorts

I’m so out of sorts today.  Not too sure why although if I don’t perk up I’ll be blaming the Thalidomide.

I’d put feeling unenthusiastic about things on and off for the past few weeks down to being anemic but after getting two units of blood on Saturday I didn’t get the usual ‘blood rush’. Then I had cause to look up the side effects of Thalidomide as I’ve experienced the occasional slight trembling in my hands – as I was in the kitchen when it happened on Sunday night I was in the vicinity of the meds. It turned out that this was one of the side effects of Thalidomide along with depression, confusion, mood changes and anxiety. The shaking affecting more than 1 user in 10 and the other affecting 1 to 10 users in 100 which is also the rating for feeling weak, faint or unsteady, lack of energy or strength, low blood pressure (which are all grouped as one) I’ve just noticed and since I don’t actually feel depressed (just can’t be ars… bothered) maybe this is more suitable. I generally give drug leaflets a quick scan but only read them in detail if I have any specific queries.

I haven’t even got the enthusiasm for being crafty today – I made a buddy yesterday and have a ton of knitting/crocheting to do but just cannot be bothered.

I got up this morning to stay up at about 8.15 (I’d gone back to bed at 7.00 after I’d been forced from the bed by a bursting bladder), but nodded off briefly on the settee not long after, made myself take Bud for a short walk in the wood, decided five minutes moving some leaves off the front would make me feel better – and it did a bit along with out of breath. Other than that I’ve made three cups of herbal tea, watched the TV, stroked Bud and read a few blogs. That’s it.

A friend did point out to me last week that people without cancer have their off days and I did have a busy day yesterday. B dropped me off at the Royal, I had dialysis, our neighbours collected me and I got home at 12.20, I took Bud out for ten minutes, I drove myself to Armchair Yoga for 1 pm, I whizzed home for just after three, made chilli and rice for an early tea (which should have been Spaghetti Bolognese but between us, B got the bags out of the freezer but I directed him to where they were, we ended up with two bags of mince so I had to improvise), had a shower while it was cooking, got dressed as a friend was calling to pick me up at four to go to the Blood Support Group (the meeting started at six, and is about forty minutes drive away, but Chris didn’t want to drive in rush hour traffic and we did get slightly mislaid so it took an hour), I ate some tea, threw up, couldn’t manage the rest, off we went (and I didn’t even pick up my knitting on the way although we might have got more mislaid if I had), then on the way home we called for chips and got back 9.10, briefly spoke to Auntie Ann who’d only got back from her Norwegian Fjords cruise yesterday, ate my chips and fish cake (which stayed down) and went to bed five minutes after Chris left at 10.10 pm – my which time I was just about staggering and didn’t even have the energy to move the plates from the sink, where Chris had put them, to the dishwasher – something B picked up on this morning.

And B’s alarm went off half an hour ago so I’ll have to get up the enthusiasm to make lunch and I don’t even feel like eating – chewing takes a lot of energy! I think I might just be tired as I haven’t even really spoken to Bud today and there’s not been much smiling going on. Gosh, darn side effects leaflets.

Oh, and I did get a call about four free massages at the local oncology centre starting a week on Friday at 3pm, which is also the date of my next blood clinic appointment so I’m sure will cause B some sort of issue but what the heck.

Haemoglobin – 10.8 (up from Saturday)

Platelets – 225 (up)

Neutrophils – 0.8 (0.1 down)

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.

Clinics and chips & egg

B and I sat in the consultation room on Friday and the Prof walked in, sighed and touched B’s arm as he was passing and I thought ‘We’re screwed!’ – okay, I lie and you know I’m always completely honest with you I actually thought ‘We’re f*&%@d!’.

And then the Prof threw me by asking about that conversation with the young doctor a week ago – but I guess that’s why he’s paid the big bucks to keep one step ahead of the patients and keep us on our toes.  We decided I didn’t need to continually be told it was serious and when I said that I’d thought it was maybe because I was generally happy and that the young doc had thought I didn’t have a full grasp on the situation the Prof said that just showed that I was coping well.  B pointed out that we’d known it was serious from the start and the Prof said yes, but that was before any treatment had been started and it was now seriouser.  At the start there was the possibility of squashing it and even when it relapsed in February but now it was more a case of keeping it under control for as long as possible whilst keeping a good quality of life –  as obviously the past few weeks hadn’t exactly been top form.

So once again I have to be different and although myeloma is an individual disease mine is being particularly individual.  It would appear that my paraprotein level doesn’t go that high which is deceptive because of the large plasma cell content of the bone marrow.

Revlimid is known to affect kidneys and it would appear that the 25mg dose did that.  My kidney function had been good for the last year, as evidenced by the black figures on the Prof’s screen, and then from the first tablet of Revlimid the figures went red.  Things seem to be on a more even keel on the 10mg dose.  The myeloma suppression of the bone marrow (and therefore blood production) seems to have eased up as my blood counts are better (I only got my platelets count which had gone from 33 whilst in hospital to 130 – WOW – minimum normal range 150).  I asked if things really settled down with regard to kidney function whether the dose could be increased and that is a possibility.

So we know that the transplant doc had said that the best option would be a donor transplant, and indeed without one the prognosis was really poor, but that the plasma cell content of the bone marrow would need to be reduced prior to it and basically at this dose I don’t think the Prof was confident that it would reduce it enough/significantly – this was reading between the lines he didn’t actually state it in as many words.

I had six days worth of Revlimid left and then a week off.  The Prof said he’d see me at the Day Unit on 2 November as the clinic for the following Friday would be really busy as he was off the week before.  I asked whether I needed to take the Fragmin injections on the week off and although Revlimid is theoretically less likely to cause thrombosis than Thalidomide it was advisable so I wasn’t coming back blaming the Prof if I got a clot.  Oh, and a fellow patient and his wife, who I met the day I was kept in the Royal last, gave me a tip that he’d been given by a nurse – pop an ice cube on the area you intend to inject and you don’t feel a thing.  Not only this I’ve found that it doesn’t leave a bruise either.

We’ll look at getting a further bone marrow biopsy late November/December to check the plasma content then.

Good news with the MRI – nothing new – C7 shows 50% compression but everything is fine with the spinal cord.  I also saw the results on the screen and missed the opportunity to ask if the ‘benign sinus disease’ referred to was actually snot.

Overall Friday I felt really good.  B commented to me and the Prof about the sprightly-ness with which I got out of the car.  And I had a shower Friday night!  What the heck has this got to do with the price of fish I hear you ask.  Well when I’m feeling tired or in need of clearing my mind I CRAVE a bath – I generally nod off risking dunking the book I’m reading but I feel better for it yet Friday there I was in the shower and I realised that not only did I feel better physically but I felt better generally for seeing the Prof too.

AND I popped the cushion covers back on the cushions after over a week of them being naked – it’s a big job as they are sewn shut – I may have mentioned this before – which seemed like such a good idea at the time I made them instead of fiddling about with button holes.  DOUBLE AND we had egg and crinkly chips (fries) when we got home Friday as my appetite is generally getting better (and this is what I felt like) although I have lost 3kg (6.6 lbs) over the past weeks so I’m in no rush to put that back on unless it’s muscle – I wonder if Bud could spot me for a set of bench presses!  Buddddddddy, come ‘ere!

Keep going there’s a giveaway right at the bottom!

Right since Sunday the following things have happened – I decided to do them as a list to aid reading (okay it was really for me so I didn’t have to link completely unrelated points).

♥  We ate tea at a friend’s Sunday evening – well more correctly I pushed my Fusilli Bolognese (sorry Margaret if that breaks any Italian dining etiquette ie, not using spaghetti) around my dish until it looked like I’d eaten a bit and the other bit had been retrieved from under the table after a piece daring leapt from my fork and landed on the new carpet leaving behind a trail of carnage on my T-shirt and trouser leg.  I did sponge it off  – kind of.

♥  I settled down on a settee and didn’t even pick up my knitting – which was commented on yesterday when I was informed I hadn’t looked a bit well then but looked better yesterday.

♥  My temperature Monday morning was 38.1 so I decided to go to the open surgery at our GPs.  And why didn’t I ring the hospital some of you may be asking – or not – but I’ll tell you anyway.  Because it was Monday, Mondays are busy, B is on holiday this week and I’ve managed to sabotage three out of his last four holidays with appointments or impromptu vacations at The Royal so rather than spend several hours there I thought we’d go to our GPs (who you will remember I think are wonderful) in the full and certain knowledge that if it looked anything too iffy they would send me along to the Royal.

♥  We left the house after I had managed to give Bud his ear drops in his correct ear, give him his antibiotic (more on that another time) but was wearing the trousers with the sponged pasta sauce stain, an un-ironed T-shirt and my night time knickers.  WHAT?  Look some people wear the same knickers (well not the same but you know what I mean) night and day, some don’t wear any either night or day {slight hyperventilation} but I like a sensible won’t show you up if you get knocked down by a bus, comfy fitting but not too loose!?!?!, doesn’t display a VPL (visible panty line) pair for the day and a comfier, slightly larger more outlandish pattern – flowers, the odd little bow, frog, little ruched bit (nothing kinky) pair for sleeping in when there is no chance of getting hit by a bus.

♥  I got broad spectrum antibiotics and told to come back if things didn’t get better – and I was informed I was somewhat cheeky when I enquired as to whether the GP had bought herself ‘Top Doctor’ cup (allegedly it was a present from a patient)

♥   Took Bud on short walk with B – napped rest of day so missed out on B taking me for new TV (ours is state of the ark at 17 years old and misses off words at side since most things are now in widescreen)…

New fridge freezer…

as that bowl (which is way nicer in real life) isn’t for decorative purposes but for the leak that it’s had for quite a few months now, and…

a new tumble drier because that muck on the top apparently isn’t going to remove itself!  Okay so it’s really because it’s lost all sense of appropriate heat settings and although it does most on cool it still occasionally does a ‘hot as hell’ setting without warning

♥  No knitting but tidied up crochet Share a Square squares

♥  Tuesday – temp 38.0 but dropped to 37.5ish for rest of day, Bud, B and I had short walk, felt better later in the day

♥  Bud stood in his own poo in the garden and was ever so good at having his paw, washed, washed and disinfected, but was a bit traumatised at having his bum wiped, well it was more of a swipe as he battened down his tail tighter than a submarine’s hatch so I had to improvise (Addendum – this was before we knew it was on his paw!)

♥  Didn’t go to support group as temperature and anything associated with it was mine, all mine I tell ya!  Had been looking forward to it – it was a talk by Blood Pharmacist (you know I mean Haematological Pharmacist but I can’t spell haematological)

♥  Did manage a little bit of knitting

♥  Phoned hospital this morning even though temp only 37.6 and I felt better than Sunday/Monday I felt worse than last night and just not right.  Left home at 9:10.  Got home at 15:45.

♥  By the time my temperature was taken it was 36.9 (for the love of dog), bloods were taken and we were isolated what appeared to be the Marie Celeste ward by which time I felt decidedly better and B put forward that we could go home.  Attendant Health Care Assistant said we could, but did he really want to have to bring me back later in the week

♥  Did a little bit of knitting

♥  Saw junior doctor, and during course of conversation mentioned that it had dawned on me whilst I was sitting there that the way I felt was similar to the way I felt in February when the myeloma numbers jumped up and since it was 31 July the last time my paraprotein was measured she agreed to it being done once we reached matching lingo (serum immunoglobulins) and said she’d chase up this morning’s blood results

♥  Had kip – just to prove I wasn’t faking – B had been asking me crossword clues and I nodded off and then briefly woke up and asked him, to his amusement, what the next one was before dropping off again

♥  Health Care Assistant came to check on us and where things were up to and said that the doc had said that the serum immunoglobulins were measured on Friday so no further test needed today

♥  Doc came back later to say it wasn’t good news and that IGa results were in from Friday and it’d gone up from 0.65 ish in August to 17 something (sometimes don’t you just hate it when you’re right, not always just sometimes) and that my blood counts had dropped a fair bit since Friday

♥  We bumped into the transplant doctor coming out of the lift, who knew where things were up to, and he said that obviously where treatment would probably have been needed to reduce the plasma cell content of the bone marrow prior to transplant it would definitely be on the cards now.  ‘Are they keeping you in?’  Slightly high pitched ‘No’ from me.  Dr S said I’d probably see the consultant on Monday and he’d chase up the MRI request

♥  I take bad news better alone – B was at home when I found out in February that it was back but today he sat and leaned forward with his head in his hands and I had to ask him if he was alright – as did the doc – he told her to just deal with the patient and she (patient) would inform him later.  And when I asked if he was okay while we waited for the lift when he answered ‘I just don’t want to lose you’ I had to fight back tears while entering a lift full of strangers.

♥  Although we didn’t eat out we got drinks and Eccles cakes in the cafe

♥  My Auntie Ann and I were supposed to be going to the Myeloma UK Infoday in Manchester on Saturday but when I asked the doctor if there was any chance I did have an infection I could pass on she pointed out that the bigger risk was to me with how my counts had dropped (although I’m not neutropenic).  So if anyone is reading this who lives close enough to go I have three tickets up for grabs.  Just drop me an email (feresaattenuata@yahoo.co.uk) or leave a comment to that effect and I’ll email you and they are yours – free of charge – well if you do me a little report saying how it went!  Just kidding.  Actually if anyone takes me up on my offer and does a little report I’ll pop in on here AND give them a free Myeloma Buddy.

♥  I also learned this week that CD/TV in the local ads in the paper doesn’t stand for compact disc/television but cross dresser/transvestite – which could get confusing especially if you were trying to stick one on your living room wall!

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!

 

 

 

To cut or not to cut that is the question

My hair is just about due another trim but since it is noticeable thinner, well it is to  me when I run my hand through it, but maybe yet doesn’t look it, I can’t decide whether to cut it or not.  It is certainly coming out more than usual.

This time however isn’t like during my stem cell transplant when it made a sudden emergency evacuation, this time is more like a leisurely stroll out of its follicles.  I don’t think it’s growing any more and I’d hate to give it a trim only to reveal general patchiness that isn’t obvious at its current length.

B is on bald patch alert in case it gets a bit patchy round the back where I can’t see it.  I’m not too sure how reliable he is going to be and probably need to sort out back up spotters.

I think I’ll give it another week and see how it goes – boom boom!

Last week during B’s holiday we spent 10.5 hours at the hospital (not the 15 B initially thought we’d stayed there for) and all I managed to get done was the beaded centre section of this crochet sandwich.

When we went on Friday I was able to have Velcade but my netrophil count was borderline.

Hb – 11 (oh er Mrs, highest it’s been since January)

Platelets – 135

WBC 1.3

Neutrophils – 0.6

I got tomorrow for a blood count but may not be able to have the Velcade and it could be a GCSF injection (to make me produce more of the little neutrophils) instead.  This Monday I aim to make sure I have two knitting needles with me!