Monthly Archives: August 2010

Blood results and a dodgy chicken

Off we went to the Royal on Friday for the latest blood sampling.  It was bedlam.  After a relaxing hour away from the waiting room getting a coffee we came back to find it bursting at the seams!  An announcement informed us they had no ICE, well that’s okay we just had a hot drink, unfortunately it turned out not to be so simple and ICE was in fact the computer system so they had no blood results without someone physically going to the lab to get them.  As an old boss used to say ‘Computer ARE fantastic WHEN they work!’

Now I don’t mind waiting that much (B on the other hand is another story), once I’ve established that the strangers near me don’t appear to have anything contagious or smell I’m quite happy to get my knitting out!  We weren’t actually there that long but didn’t get to see a Professor, no Professor – I feel a strongly worded letter coming on!  We saw a young doctor who we had seen once before and who despite being hounded and harassed several times during our time with him and apologising profusely for this put in a sterling performance when faced with my questions and only once came close to putting his head in his hand to regain his composure!

Soooooooooooo the good news is that I am quote ‘in complete remission’.  I am in as good a position as could be hoped for at this stage after transplant.  (He did used this expression last time we saw him but I guess you just can’t hear something like that too much although I think he may be slightly superstitious as he did touch his head!)

HB – 11.9

Platelets – 240

WBC – 4.7

Para protein – 0.0!

However I am immunosurpressed (I don’t think you can tell by the way I walk) and it is too soon to tell if this is a temporary result of the SCT or a permanent effect of the myeloma – so I’ve told B that this means I can’t go anywhere near his mum’s tea towels!  This could explain the cold I’d had for ten days at that point but the doc was satisfied that it was getting better.

B commenced our round of questions with

‘So can we come back in three months now?’

Doc:  ‘Well eight and then we’ll see.’

So we go back in eight weeks to see the doc but for the blood test one week before so the PP levels are up to date.

However last time we went I raised the subject of Zometa and its anti-myeloma affects.  The Prof said it was up to me but I should consider the downsides of inconvenience and potentially  more damage to teeth than Bonefos.  I also asked about Thalidomide maintenance therapy and was told he would raise it at the meeting after clinic.  This was discussed and apparently this isn’t offered routinely at the moment as although it improves disease free progression it doesn’t increase overall survival which is what I’d read.  However the young doc stated that Zometa had been proven to improve overall survival and without a by your leave said I should switch.  So we’re doing that.  So no more tablets – YAYYYYYYYYY!  No more, I can’t have a midget gem at 23:30 because of taking my Bonefos.  (Well no more ‘official tablets’ I ‘voluntarily’ take curcumin, flaxseed, glucosamine and chondroitin.)

B had so been looking forward to three monthly appointments and now we are down to four weekly Zometa trips in addition to the three month appointments!

Now both the Zometa and the pre-appointment blood tests, obviously require a trip in the car and B didn’t say anything about this at the time and therefore I assumed he was satisfied I could go by myself – IN THE CAR, BY MYSELF, TO LIVERPOOL.  Sunday however he felt the need to broach the subject – he will be accompanying me – for the company of course!  I will have to get him to accompany me to a museum or art gallery and then we can see how long it is before he trusts us (the car and I) to go by ourselves.

I also asked for confirmation of what type of myeloma I have – yes, I know, more than 12 months after diagnosis but obviously this is one of the reasons we swapped hospitals.  I had seen what I thought was IGA on a set of blood forms but you know what doctor’s handwriting is like so it was hard to be definite.  After the doc confirmed it was IGA I asked if this made me susceptible to certain types of infections over others (all in the midst of beepers and nurses with files, and B asking what the difference was and if it was better or worse to have a rare form of a rare disease but being reassured that the treatment was the same regardless I was so impressed at one point when he had to answer a beeper and was able to come back and carry on from where he left off) apparently it doesn’t – it’s not that straightforward – however if you have IGG you can get a top up of antibodies via infusion should the need arise.

After wishing the doc a better afternoon that the morning he was having and as Friday was a lovely day we decided to take a little trip into the city centre for lunch, via a fabric shop where I found just the fabric I was looking for curtains for my sewing room, just perfect, JUST what I wanted, except I wanted it for way less than £17.50 a metre!  So needless to say I will have to rethink that one.

So we vent to ze little French bistro for ze lunch.  However my little English tummy had been a little temperamental following a shop bought but freshly made sandwich last Tuesday.  It had settled down  but took exception to the chicken main course.  Now I can be a little bit funny with dead things on my plate.  I don’t know if it’s because I was veggie/vegan for a number of years but I generally don’t like what’s on my plate looking like it could have once been a living something.  This has become increasingly so since my SCT.  In fact we had ‘chicken gate’ a few weeks ago.

I decided it would be a good idea to get an organic chicken, a dead one obviously, and I cooked the chicken and made two meals from it.  I then decided it would be an even better idea to use the carcass for stock for soup.  Big mistake.  I took the lid off the stock pan and gagged.  I walked away from the pan and came back later and, did you guess, yes I gagged.  So B drained the stock and I cooked up some broth mix, B stripped the carcass and added the chicken bits and it was VILE!  It was the sort of culinary disaster that is reserved only for my baking endeavours (which are either excellent or unrecognisable as any sort of food stuff).

So I vas sitting in ze little French bistro (where there was no music in the toilets but a recording working through the alphabet and zaying ow to pronounce zings in ze French) having thoroughly enjoyed my entree and then the chicken landed.   SPLAT!

B offered to swap for his pork steak but by then that wasn’t looking too appealing either.  So after five minutes of deep breathing I approached the, well to be perfectly honest I’m not too sure what one bit was – there was definitely a drum stick – but the other may have been the top part of the leg squashed, some underlying area – I really don’t know, but I took the skin off and the meat fell off the bones so it seemed done but it was all dark meat which I wouldn’t normally touch with someone else’s fork.

For the next ten minutes I pushed stuff round my plate, eating the odd snippet but by then even the veg was unappealing and I was so looking forward to the ginger and passion fruit cheesecake and couldn’t even eat all that.  That also somehow managed to look like I’d left more than I’d received much to the consternation of the waiter.  And am I alone in thinking that waiters with ze thick accents probably sound as French/Italian as I do when they set foot out of the restaurant?

Following the chicken I ended up being unable to eat my Indian takeaway on Saturday, my lunch on Sunday, tea a friend made on Sunday night by which time I was feeling decidedly ropy and couldn’t wait to get home to bed which is unlike me, and finally up-chucking in the wee small hours of Monday morning and spending all Monday on the settee mostly asleep!  In fact in the world record of not betting off settees I managed to stay on the settee from the time B got up until he went to work!

I am however feeling considerably better today and am sure it’s impossible to get tired of dry cornflakes!  Isn’t it?

We are engaging in a modified lifestyle plan

It includes the following…





this is to be combined with






Inches from



I may have suspected this was necessary when I had to buy a pair of size 14 trousers to take on holiday.  I think the equivalent size in the States is about 357!  And then I found this…

That was July 2007!  Let’s take a shufty at August 2010 – don’t panic or reach for the sick bag I have more clothes on…

I am now off to eat a someting to cheer me up – ohhhhhhhhhhhhh no I can’t do that now, I know I’ll go and kick Bernard instead  – that should do the trick!

Letter to the Editor

My sister in law, Gill, rang yesterday to ask had I seen an article in the Reporter, one of our local free newspapers, as it happened I hadn’t.

A young woman is having a fund raising event for Myeloma UK in tribute to her mother who died in 2006.  At first I thought Gill was going to suggest we went and then the penny dropped – it was hu-ga (I still have no idea how to spell it, okay, and I haven’t had chance to use it anywhere else yet, so you’re getting it again).

The young woman’s mother was the wife of my nephew’s rugby union coach and Gill emphasised that she hadn’t had the treatment I had. Apparently Gill gave a donation in lieu of attending last time as the event can be very emotional.  I had been oblivious of this previously but obviously it musn’t have appeared in the local paper before!

After reading the article I wrote a letter to the editor – well actually, I emailed via their website but that doesn’t sound the same!

Dear Sir

The above article relating to myeloma contained the following sentence which, although interesting, has no relevance to myeloma –

Bone tumors occur most commonly in children and adolescents and are less common in older adults.

Kind regards’

I think I may have been a tad snippy – I may as well have signed it ‘Disgusted Rainford!’ since I wasn’t travelling down to Tunbridge Wells to send it!

Creative Space Thursday

This week for I managed an almost arty shot…

It’s just a bit of a sod that the rest of the room looks like this…

The above box is filled with my yarn index (oooohhhhhhh) which has lots of little cards like the following…

I started doing photos and listing the yarn on Ravelry but it’s just not the same as touching something!  So each card has a sample of the yarn, the weight and if known, the manufacturer (other than sheep or crylics), type, composition, tension and needle size.  Oh, and the little PV in the top right means that because the yarn is variegated a sample is also attached to a card in that section, but only a sample and a reference to Pink no other information.  Why the duplication I hear you ask, well I heard B ask it but I don’t expect anyone here to glaze over like he did when I explained.  It’s so I don’t have to either duplicate reduction in yarn amounts on both cards or more likely set my heart on something only to find out I hadn’t duplicated the information and there is no more Sirdar Hug (50% wool, 50% polyester) that knits to a tension on 13sts x 17 rows over 10cm on 8mm needles left!

Its a small town and we all support the team

That’s because we’ve got hu-ga!  Okay I have no idea how to spell it I heard it on the telly earlier.  It’s Danish and apparently has no literal translation, the closest is a mixture of community, cosiness, friends, family, fun, enjoyment.

I love words like that that.  I remember teasing a Welsh surveyor I used to work for who, although still living Wales, wasn’t a Welsh speaker (other than for a few essentials like asking for a chip barm because he felt he got more) by saying that while I was waiting for a film to start on Channel 4 Wales I saw the end of the previous programme which was quite naturally in Welsh and which appeared to my English ear to be about peoples’ opinions on sex.  I arrived at this conclusion because although the age group of people on it ranged from probably late teens to 80s one of the words I could definitely make out and which was used a fair bit was, well, sex!  However one of the other words I recognised was exciting and I told him it was so sad that there was no Welsh word for exciting.  He informed me in no uncertain terms that the Welsh had a word which could not uneven be defined in English and which left exciting standing.  The best he could do was say that the word meant a sense of belonging.   I wonder if this was the sort of word that was graffited onto burnt out holiday cottages.  Anyhoo, moving swiftly on…

Ages ago now, a couple of months at least, so long that I think she has probably thought I forgot all about it I asked Pamela Buchanan if I could do a link from here to her appearance on the BBC news in Northern Ireland.

So here for your hu-ga is Pamela (don’t you just love the accent)

Why I love our GPs

I called at our GP’s today to pick up my Bonefos prescription and picked up a copy of the current newsletter.  I really should get one every month.  Previous ones have dealt with suggestions about comfy seats, apparently a no, no as it might encourage patients to visit, and TV’s in the waiting area, again a no, no for the same reason!

Along with my prescription I received a copy of a thank you for some stuff I had knitted and a bag of wool – Isn’t the NHS wonderful!

Raising awareness of Multiple Myeloma

I’m not even asking for any loose change – just one click, or one click one a day for the next nine days, to raise awareness of Mutiple Myeloma via NASCAR 2010 which is apparently truly awesome – do we need to discuss the Top Gear episode where the trio suggested it maybe wasn’t?

Myeloma Survivor Car

Thanks for clicking!

Daughter of Cujo – Part I

Way back a fortnight last Monday we took the m-i-l to the doctors for the results of her blood test.  We had to take her because when the receptionist had asked delicately whether she was capable of taking the results over the phone and I had to say no.  The doctor apologised for this but it’s not his fault she doesn’t listen unless it involves a pie or cup of tea!

Basically her platelets are a little low, well within normal range but a little bit lower than the previously constant level so they want to keep their eye on this.

While we were in the waiting room we discovered a way to keep the m-i-l relatively quiet.  Someone she didn’t want to talk to came in and she only spoke twice the whole time he was in the waiting room with us.  Unfortunately it wasn’t that long.  A gentleman brought the visiting priest in for his dressing changed and the m-i-l commented ‘Ohh, he’s big isn’t he?’  (This was after being informed that he was normally in Rome – which intrigued even me as a non-believer – but I didn’t get to enquire further as the priest was ‘big’.)  This comment was fielded exceptionally well by the companion ‘Yes, he is tall!’  Even though we all knew that’s not what she meant!

Whilst waiting the m-i-l announced she had a cold and sneezed.  I shot further up the bench and gave B a piercing look.  This is the second time she’s done this to me.

m-i-l:  ‘What?’

Me:  ‘Mary, why didn’t you say you thought you’d got a cold before.’

m-i-l:  ‘Well I haven’t really my nose is just running and I haven’t got a hanky.’  Wiping nose with hand after second sneeze – I nearly pass out!

B went and got tissue from receptionist whilst Mary found a hanky in her pocket!

m-i-l:  ‘Are you better now?’

Me:  ‘Well…’

m-i-l:  ‘Yes or no?’

Me:  ‘Is not that simple!’

m-i-l:  ‘Oh. Isn’t it?’  In well you look fine, so I think it must be that simple tone of voice.  Well no, it isn’t and I’m not prepared to talk about it in front of people I don’t know from Adam at shouting level and then have you cut me off with something like ‘Do they know we’re here?’ when you get bored or don’t understand what I’m saying!

The doctor that we saw is young, cheerful and broad – not in a ‘big’ way but in his accent – which for some reason always makes me speak broader too!  A bit ‘eee by eek as pies cum’ – even though I’m not from Wigan!  Here’s a little Wigan joke, that may get lost in translation

‘A fitness instructor says to a group of women in Wigan ‘Hands on thighs’ and they all cover their eyes.’  Boom, boom.

When we get back to the m-i-l’s B offers to make a cup of tea.  Whilst he’s doing this I take a look at the phone, because although Mary is notorious for not putting it down correctly it has been engaged a bit more than normal.  To the extent that my eldest nephew sent me a message on facebook from South Africa saying they’d not been able to get through.  They’d manage to speak to Mary once in the first week but as far as she was concerned this constituted not having spoken to them!

So I messed about with the portable phone and determined that the Careline connection seemed to be causing some problem with this so plugged the old fashioned traditional wired phone in and it worked fine.  To enable the m-i-l to sit down using this phone I moved one of the little stacking tables next to the closest chair, which required explanation whilst she oversaw the job from the settee.  ‘There’s a plug there not plugged in.’  ‘It’s for the lamp.’  ‘I don’t use that, it doesn’t need plugging in.’ In the process of putting the portable phone in a safe place I kicked my cup of tea which splashed the carpet generously.

The amount of kitchen roll I used to soak it up became an issue.  I’d stopped B scrubbing at it with the paper towel and was quietly soaking it up…

m-i-l:  ‘That looks fine from here.’

Me:  ‘It’s still wet’.

m-i-l:  ‘It will be fine when it dries.’

Me: ‘It will leave a mark.’

m-i-l churning:  ‘…using all the kitchen roll.’  (Because kitchen roll is worth so much more than a carpet!)

Me:  ‘Fine, if you’re happy with with.’  Getting up and going into the kitchen.  Okay it wasn’t that short – I put up a bit of resistance to stopping but in the end thought ‘Sod it, it’s not my carpet.’

m-i-l:  ‘Well it looks okay from here come and have a look.’

Me:  ‘As long as you’re happy with it, that’s fine.’

m-i-l:  ‘No, it does!’

B then insisted on making me another cup of tea as he’d thrown the remainder of the other one away.

I collapse into the chair as I am now breathless and NEED a sit down as she seems to suck the energy from me at the best of times, I think it’s partly because I have to raise my voice as she can’t hear me.  I’m sure she does this to wind me up because as B pointed out she heard some women in the doctor’s no problem.

m-i-l:  ‘That chair’s too far back.’  The one I’m sitting in.

Me:  ‘I didn’t move the chair.’

m-i-l:  ‘It’s not normally there.  There’s stuff behind it I need to get to.’

Me:  ‘Fine I’ll take a look when I get my breath back.’  I hate admitting that I couldn’t get my breath but otherwise she wouldn’t let up.  As it turned out she still didn’t let up.

What felt like 20 minutes later, it was probably five, she was still on about the chair.  I would have got up in a strop and checked the chair but I just didn’t have the energy.  At this point B raised his voice and she sulked – for all of a minute and then carried on.

When I finally got up to check the chair it was exactly where it normally was with its casters snugly in the indentations in the carpet.

Then she started about having her hair done.  She’d been two weeks ago but now she’d decided her legs weren’t up to it and she was going to go round the corner.  B mentioned the mobile hairdresser that she’d refused a few months ago, but still no!

On the journey home I found the energy to moan a few times about how she zapped my energy.  B said he was embarrassed by his mother once while in with the doctor.  She had complained about the doctor running late whilst we were in the waiting room and other people going in before her, including the priest, even though they were going to see the nurse.  She asked the doctor how come he’d been so long with the previous patient, he told her it was because they were discussing their holidays!  The m-i-l said ‘Were you?’  She’s never done this type of humour well.  There used to be an advert with a ‘panda’ doing some tricks and when I said that it was amazing that they could train a panda to do that sort of thing, she informed me, quite seriously, that it was a man in a panda suit!

Don’t miss Daughter of Cujo part II – where I discover the ultimate mother in law deterrent!

Stem Cell Transplant Holiday Packing List

In view of Sean over at My Life with Myeloma going in for his stem cell transplant next week I decided to do a stem cell transplant holiday packing list.  Obviously some items are specific to the Royal in Liverpool, and some to the UK.


Mild hand wash (I took Highland Soap Company and can recommend this one fully – in fact we took a 50 mile detour on the way to Aviemore so I could stock up and get to smell everything)

Body lotion (again Highland Soap Company – this agreed with me even when my usual facial moisturiser which is quite natural didn’t)

Facial moisturiser (mine fell out with me as my skin, which is the only sensitive thing about me went extremely sensitive and I ended up sending Auntie Ann on a shopping spree for Simple stuff, which I don’t normally use as it’s not natural enough)

Shower gel (naturalish)

Children’s fruity toothpaste (I took natural, again, minty toothpaste but it stung when my mouth got sore)

Soft toothbrush (Aldi’s best)

Deodorant (again, strangely enough, natural)

Moist toilet tissue and barrier cream along with mouthwash, mouth coating rinse and pastilles supplied by holiday hosts.  (I didn’t make the most of these since the rinse made me throw up, it got swapped for a less volitile one

Hand sanitiser – took my own as hospital one makes my hands raw, applied in conjunction with body lotion (just to my hands) as I did use a lot


Pyjamas (or nightie – whatever takes your fancy – I decided against trackie bottoms and T-shirts even though they are comfy and even though I got up every day from the bed to the chair jim-jams were the right choice.  Even allowing for washing being taken home every day you need about 100 pairs.  Okay I exaggerate but only slightly.  I took about seven and had allowed for two pairs a day – HA  – on a good day maybe but I didn’t take into account a nosebleed, the odd bit of vomit and a lot of wee – I would have you know not because of THAT kind of accident but because of missing the jug!  I know how hard is it but I now realise it’s no wonder because little did I know at the time but diamorphine, of which I was on 30mg at one point is heroin!  I’m a junkie.  There was oramorph and paracetamol on top of that.  I have to say I don’t see the appeal!

Undergarments – Knickers, bras, socks –  I can say without a doubt that men have the easier option here.  Bras and IV stands/Hickman lines DO NOT MIX.

One set of outdoor clothes – I kept the pair I went in – I had intended to use this to go home in when I was able to go for a little walk around the hospital when it was quiet for two days before I was released I got dressed as I was not prepared to wander round in my jim jams even though a lot of people do even outside.

Slippers – I don’t do slippers!


Bearing in mind that for most of the time everything, EVERYTHING (cordial, biscuits, sweets) opened has to be used within 24 hours or given away individual stuff is best if available.

As I went in on the Monday after the Wednesday I didn’t really eat any hospital food except for breakfast cereal/porridge and a cooked breakfast provided on my last morning.

Mint tea, camomile and night time tea again these lasted until Wednesday.

Things I did eat

Rice pudding – tons of

Cottage pie


Sweets – blackcurrant and liquorice, fruit sherbets (went off these a BIT when mouth got sore), Haribo gums, again sours were a no, no.

Fruit pastille ice lollies

Hospital shakes

Tinned fruit – satsumas (although I can’t say I ate that many)

Yoghurt – Muller Fruit Corners – generally just the yoghurt – a big NO NO are probitoic yoghurts

Ribena – I went off water, it tended to make me sick

Orange juice (hospital supplied – I know this is contraindicated for chemotherapy but it went down better than just water)

Milk (hospital supplies) with crisps

Hot chocolate (hospital supplies)

McVities Digestives

Chocolate – this was okay at first but then made my teeth hurt, like cold stuff can do!

Chocolate milk – okay at first but then went off


Hospital supplies TV with freeview (I didn’t switch mine on)

Laptop – downloaded quite a few films from skyplayer, bigfish games also essential if only for visiting husband!

Knitting – socks, myeloma buddies, baby blanket – not much done but like toddler’s security blanky

Books – at least one big one for storing in ‘library’

Other Stuff

During administration of melphalan I had a hospital ice lolly.  I think I should have gone with ice instead and lots of it.  I don’t know whether this would have made a difference to the trouble I had with muscositis but this is the route I would take if need be again.  It may not make a difference but it won’t do any harm!

I didn’t have my hair cut/shaved before I went in.  I did however have a number one as soon as it started falling out which was 12 days after the melpahlan – however I understand this varies immensely.

As Fred, my first night nurse said when discussing whether I wanted a Periton for itching caused by plaster covering Hickman line (same plaster that she had put down not to be used and which caused a bigger scab than from line – I still have a mark the reaction to the plaster), anyhoo, Fred said ‘Heroes don’t get better faster and it seems longer!’

Whilst I was typing this I remembered something and had to ask B a question.

Me:  ‘Did I ask you to look at my green poo?’

Long pause – B: ‘Yes, but I didn’t.  Well at least I don’t think I did.’

Me:  ‘You can’t have done, you’d have remembered.’

Apparently it goes green as a result of some bloke called Billy and his rubic cube!  No, seriously it’s because of bilirubin and the liver detoxifying and as one of the nurses said it’s not like real poo!

And you get to have conversations about wee like…

Me:  ‘Is that okay?’

Nurse:  ‘Yes, I was just thinking what a good colour it is.’

Me:  ‘No, the froth on top.’

Nurse:  ‘Maybe it’s normally like that.’

Me:  ‘I think we can safely say based on what I’ve seen over the past few weeks, no, it’s not.’

Nurse:  ‘I wouldn’t worry about it.’

It only happened a couple of times and only at night and only after taking a certain tablet.

And my final tip – when your wife is driving for the first time on winding highland roads, don’t ask her what speed she is doing when approaching a bend and then after she provides the answer complain that she nearly (allegedly) crashed!

Holiday Knitting

Here’s my holiday knitting so far.

Two baby jumpers based on the five hour cardigan pattern but adapted to be jumpers but still on two needles.  I don’t really do circulars unless I have to because I’m a tucker ie, I knit with my right hand needle tucked under my arm so as you can imagine circulars don’t flow.  I’ve tried holding my yarn with my left hand but a toddler could go faster!  I really must time myself to see if it is achievable in five hours – which obviously translates as to see if I can do it faster.  ‘Look B I know the weather is gorgeous but I’m no target to get this finished in four hours and 56 minutes!’

Two Share a Square squares from a new ball of yarn not yet from the recycled cardigan.  I wasn’t too sure how these would turn out, particularly the pale yellowy and purple bit that looks like the suggestion of fairisle when knit but I’m happy with it

And lastly my Summer in Kansas shawl which I’ve decided to enter into the local ‘village’ show in early September – no pressure there then.