Get Well or Die Tryin’

Where to start?  The beginning is always a good place.  So, when a man and woman love each other very much they… Just kidding.  Let’s start with…

Thursday – Chris and I arrived at the Royal to ‘Are you in the diary?’.  ‘Yes, the myeloma nurse’ who I’d spoken to on Tuesday ‘booked me in with the other receptionist.’ We took a seat and shortly after got called through by one of the nurses who said ‘So you’re here for blood tests for tomorrow’s appointment?’

Me:  ‘Well no, I’m here to see a doctor about the numbness and do I have an appointment for tomorrow?’

Nurse:  ‘I’ll just double check with receptionist.’  On coming back ‘Yes, 10:10.  Do you want to wait to see a doctor now since you’ll be seeing the consultant tomorrow – more knowledgeable that’s why their paid the bigger bucks.  It’s up to you.’

So after having bloods taken we went into the city centre where Chris did a little shopping and we dined Zizzi’s – as they do Chris’s favourite ever meal Casareccua Pollo Piccante and I had good ole Spag Bol (or rather Spaghetti Alla Bolognese).

Friday – I was unsure as to who I was seeing at clinic and when one of the health care workers checked with the myeloma nurse, who was a bit exasperated (not with me) that I’d not managed to see a doctor on Thursday after making all the arrangements for a senior doctor to see me, it turned out our appointment was with one of the transplant doctors and the bone marrow transplant co-ordinator to discuss the prospect of an allogenic (donor) transplant.

We were in there an hour and 20 minutes, possibly because a big chunk was taken up with altered sensation talk.  Along with my right forearm the pad of my left thumb and the right side of my chin now feel odd and I still have, intermittently, the pain in the crown of my head.  Straight after the appointment I got some free x-rays on my head and neck (skull and cervical spine to the more technical amongst us) and Dr S did a request for some MRIs.

When we got to the transplant bit Dr S explained that the role of allogenic transplant in myeloma has no hard and fast rules.  It is neither proven or unproven as THE way to go however, given the way things had gone so far for me, without giving a donor transplant a whirl the prognosis was very poor (he did also say really poor at one point and hey, overall both are better separately than together – really very poor).

Last appointment the Prof had mentioned another autologus (from me) transplant and then a mini allo (from some random stranger) transplant.  However Dr S said that another auto couldn’t really be considered for two reasons – he could almost guarantee I wouldn’t produce any cells to harvest (we had trouble last time and there’d been the subsequent melphalan for the transplant last year) and with the plasma content of the bone marrow trephine being 80%-85% (the Prof must have rounded up to 90%) that was a whole bunch of myeloma cells to potentially give back.

As my paraprotein is zero but my bone marrow plasma cell percentage is 85% and my free lite chains (not something I’ve paid any attention to in the past) haven’t been measured since February Dr S thought it worthwhile to count them now in case the myeloma has mutated and stopped producing a full measureable monoclonal protein – the full one is made up of a heavy chain (IGa in my case) and a light chain (mine is Lambda).  In fully secretary myeloma the full proteins are measured and known as paraprotein, M-spike, PP, M-protein.

In some people however only the light chain is produced and having no accompanying heavy chain to bond with it is not measurable using the regular test that picks up only full monoclonal proteins.  However since the advent of a way to measure these free (unattached and possibly flirty) chains the number of patients that show up as truly non-secretary (eg, not measurable through blood or urine) has dropped to 1% or 2%.  Everyone, with or without myeloma, produces excess free lite chains (maybe in case one of the full proteins gets divorced) but an inordinate amount in someone with myeloma would be indicative of active disease.  So I had blood taken to check out the number of loose lite chains cruising around without a partner.

I also had a blood sample taken for tissue typing (HLA).  Apparently there are 10 potential pairs to match – 10 is good, nine is okay, eight is do-able but not ideal, seven and below are non starters.

The other thing that would need to be looked at is reducing the 85% plasma cell content before transplant.  It may, hopefully, be sitting there inactive at the moment (freelite test pending) but to transplant donor cells at that percentage would be like giving the myeloma cells a chance to claim permanent squatters’ rights before the donor cells have fully moved all their stuff in and made themselves at home.

With regard to the transplant itself if we KISS (Keep It Simple Stupid) the figures are – 1/3 kark it as a result of the transplant or complications arising there from, 1/3 relapse and ultimately pop off because of the myeloma and 1/3 go on to have a long remission.

As we needed to go to my Auntie Ann’s on Friday if I were to see her this weekend (she was going to London Saturday/Sunday to watch Saints vs Harlequins) I didn’t get my lunch out – well not fully, we ended up with our first ever Subway Subs eaten in just opposite the hospital.

Saturday – Letter arrived telling me that I had an appointment on Friday!  I had a slight temp in the morning of 37.3 along with a bit of a headache.  Mid afternoon a friend with myeloma had rang to say there was a local show in aid of Myeloma UK by a young lady in memory of her mum, he’d just seen details of it in the local paper and him and his wife were going.  About an hour later, by which time I’d persuaded a reluctant B that he’d really like to go, I started feeling a bit ropy and my temp went up to 37.8.  So needless to say we didn’t make it to the show – not least because I didn’t want to share anything I may have acquired, because I’m mean like that.  I felt somewhat better after a cool bath and some painkillers, played a computer game with B and then started feeling ropy again and had a kip – very little knitting got done, the volume of production of which acts as a wellness barometer.

Sunday – Temperature this morning 37.3, after paracetemol 36.9, generally felt okay, tired, slightly headachy but okay.  Then at 10:00, the time I’d been instructed to wake B up, I started feeling decidedly off, got up from the desk to wake B and felt sick.  Shortly after, after getting B to encourage Bud to get on the bed with him so I had the bathroom to myself I parted company with the few things I’d consumed in the two hours and a bit hours I’d been up.  How is it though that one and a half cups of coffee, curcumin tablets, a calichew tablet and probably one digestive biscuit (I got two out but shared with Bud) assume the size of a family bucket from KFC when they make an encore appearance?

Speaking of Bud, he’s been having ear drops administered since Wednesday, reluctantly mind but not too badly.  This morning, as he got all excited in a ‘Please don’t stick anything else in my ear – I’ll be really, really good if you don’t’ way and after enticing him in with the treat he would get once they were in – I PUT THEM IN THE WRONG EAR!

We’re supposed to be going to a friend’s for tea tonight so I’m going to take it super easy this afternoon as I HATE to miss out on anything particularly if the missing out is myeloma related. Mind you, if push comes to shove I’m sure she’ll let me lie down on her settee – I mean, it wouldn’t be the first time and it gets me out of even contemplating cooking.

And the winner is…

I got a phone call yesterday morning, of all times, from my Auntie En, of all people, during which I mentioned I’d entered stuff in the village show but I couldn’t bring myself to say I’d entered her doll in case she didn’t win.  Not because she would have been disappointed, because she is really modest and was embarrassed the time she entered some dolls in a St Johns Ambulance show and won the first three prizes, and certainly not because I didn’t think her doll worthy of winning but I didn’t know what would float the judges boat. And there had been an entry of two rag dolls of a more contemporary nature.  So I ended up wanting Auntie En’s doll to win more than anything else.  However not only did Auntie En’s doll win first prize win but I won a couple of things too…

Auntie Ann came with me in the afternoon for a shufty round at the other stuff eg, photographs, vegetables, flora displays, backing some of which have junior categories which I think is a good thing.  (B spied an opportunity to get out of it and jumped with both feet and without the aid of a safety net.)

In the interim I’d decided to get through the backed up ironing pile and this caused Bud a bit of a dilemma as in my sewing room he doesn’t have an allocated or even available comfortable area in which to lie down.  Yesterday he contemplated the clean laundry basket, with the laundry still in and despite my pair of cream linen pants being on top I had to see if he managed it.  However after getting his two front paws in he decided it wasn’t to be.  Let’s take a look at Bud and the basket together for dog to basket size comparison…

(Okay the basket it not really just three times the size of Bud’s head – the angle’s made it look that way but he could just about stand in it if he breathed in – enquiring facial expression is due to being posed for a photo – this has never really happened before (excluding trying to get him to wear antlers or a birthday hat) and being woman-handled to a suitable position got him a bit wary.  This was soon rectified by the consumption of a dog treat.)

Anyhoo back to the show – I was heard to say to B and Auntie Ann that I didn’t know if I would win the Handicrafts Trophy this year (jointly or otherwise) – not out of modesty you understand but just because there were two categories I hadn’t entered and after seeing the Handmade Toys I thought my Buddies and Bunny, although cute, wouldn’t cut the mustard.  However…

It’s mine, all mine!

And ‘we’ (B and Bud included I suppose) got a bonus prize.  One of our neighbours entered in the baking, flower and jewellery sections and also won things.  One of her winning entries was parkin (now we all know I love parkin – but not parking – and that my Auntie En makes the best parkin in the world, nay the galaxy) and I may have asked whether she was giving away samples while we were at the show.  And what do you know she turned up at our door today with a selection of apple pie, parkin and bread – mmmmmmm!

Needless to say I will not be available to comment on the deliciousness or otherwise of the parkin.

Let’s finish up with a prize by prize breakdown.

Category – Cross Stitch Picture

Third Prize – I’m ashamed to say I didn’t take note of what won third prize.

Second Prize

Carousel Horses in Cross Stitch – October

First Prize

Mirabilia – Mermaid of the Pearls #26

Category – Knitted Garment

Third Prize

Rowan Magazine 41 – Peony

Second Prize was an Norwegian style jumper in a muted palette with colour areas above the ribbing and a coloured yoke that appeared to be worked in the round – I didn’t pick it up and give it the once over like but when I saw it in the morning I thought ‘Ohhhhhhh – that’s nice!’

First Prize

Debbie Bliss – New Baby Knits – Aran Jacket with Large Collar

Category – Crochet Item

Third Prize was a lovely lemon baby blanket embellished with self coloured crocheted flowers.

Second Prize

Comfort Knitting and Crochet Afghans – Greenway

First Prize

Jane Crowfoot Crochet Club 2011 Mystery Blanket

I’m embarrassed to say, but not so much that I’m not saying it obviously, that when I went up to collect the trophy the show co-ordinator suggested that anyone who hadn’t seen this should take a look before they left.

Now I have to go as there’s a cup of tea wating for me and I have a big decision to make – Do I start with the apple pie, parkin or the bread with some butter on it?


Walking back to healthiness – Part II

Last Monday I woke up and felt well, grumpy, unable to speak and barely able to see so basically how I typically feel when I first wake up particularly if anyone (Bernard) is expecting me to do anything (like make breakfast). However once I’d come to I didn’t feel good, I didn’t even feel okay – I felt fantastic – really fantastic .  I’d had this ‘conversation’ with a friend about how, despite having to work round the bone stuff limiting my daily activities by a vast extent compared to, as B says ‘the old Paula’, I probably still thought deep down one day I’d wake up and feel like I could conquer the world again.  And last Monday was as close as its got after myeloma put a spanner in the works.

We hadn’t all walked together for over a week and since B had put his alarm on for a really early wake up call, 13:30, to do a paint a couple of fence panels I felt able to do these myself in order that we could get to walk together, ‘cos I kinda like doing that. So Bud got two walks that day.  However for the rest of the week I was at times somewhat lacklustre – well in my opinion anyway.  Despite the several disgruntled notifications from B regarding the fence panels, especially since he’d expressly forbidden me to do them, I however put the lack of lustre down to the two walks because I must have walked milessssss and miles and miles.  B himself proforred a suggested four miles per walk – so eight miles in one day – WOW.  Well WOW for now, I once did 10 just in a morning on the treadmill to ward off the excesses of Christmas.  Heck, I’d do five after getting home from work and before hitting the weights and getting tea to get rid of a cream cake but for now –  WOW.

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So Saturday I measured it on the street atlas, I measured it several times in fact, with several different kinds of measuring stuff – because wool can stretch but my dinky little tape measure wasn’t as flexible round corners.  I myself had started to think that it wasn’t as far as B thought because I have short legs, well in fact the whole of me is quite short – and indeed is about one and a half inches shorter than ‘the old Paula’.  So although I walked quite fast before anything above 3.3 miles an hour resulted in the odd skipped step/start of a jog.  Now with this in mind and the fact that I walk a lot slower than I did it dawned on me that to get this walk done in the hour and a half it usually takes would be nigh on impossible if it was anywhere near four miles.

So as the saying goes ‘what can’t speak can’t lie’ and the tape/wool/ruler says 2.5 miles and 2.75 absolute maximum even with a bit of creative cornering.  So much for thinking that I take not so much my life in my hands but my femur lesion in my stride on every walk due to the speed I go.   I guess it’s back to my extreme sport being using Signature Needle Arts Stiletto Point knitting needles!

Walking back to healthiness

After sharing written details of our current doggy walk I though I’d take some pics.  Some turned out to be more than the 70, so I narrowed it down to 50ish and even got B to give them the once over to see if they gave a good impression of our daily outing.  I thought I’d take a pic every time we turned a corner or the view changed – turns out there’s a lot of corners!

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Part way down there’s pics of a blue bridge railing.  Someone must have pasted arty pics (like really arty – not ‘arty’ as a euphemism for rude) to the main uprights and someone else must have taken exception and spray painted over the images in black.  There’s just one that they missed.  This happened once before about four years ago when I used to cycle home this way and pics appeared on the opposite side of the posts and these too were defaced.

I would like to point out before anyone alerts the authorities that the last pic is for artistic purposes only and Bud doesn’t usually get to drink like this – he doesn’t get to drink at all!  Just kidding we have a portable bowl – my hands.

Doesn’t it look a long way – doesn’t it? It does though doesn’t it?  And that’s just half of it – I mean on holiday we walked five kilometers and it has to be further than that, right?  Following a discussion on Friday I measured it on the map – I was so disappointed.  I’ll share the grand total tomorrow along with THAT headstone.

Looking up Shawls

Today, well this evening in fact, which is probably the reason I am currently so tired I could cry and am cutting it fine to post a Creative Space Thursday post, I finished my

KAL stands for knit a long (just thought I’d let any of you who were uninitiated know – this included me for the first two weeks of it).

I had a little assistant when I took my photos – I think I may have left a boiled sweet stuck to the shawl because he was being very inquisitive (rude) looking up the bottom of it.


And it cost me the price of the pattern.  The purples were given to me by a friend and were part of her machine knitting days and the green from one my fellow armchair yogaists.

I would also have liked to share my latest afghan made up of my ‘boo boo’ squares made last year for Share a Square when I had a little misunderstanding between worsted and double knit but Bud had other ideas…

(Please note he is still pointing in the general direction of the shawl – he has such a hectic schedule – standing on crocheting and looking up a shawl in the same evening!)

So more on that when later.

Other creative spaces here.

Buddy gets a Bandage

On Friday we had a lovely lunch out with Sean and his charming Mrs, Charito. To save me blogging about it you can pop over to Sean’s blog and get all the gen along with seeing pictures of my current cancer patient hair cut (it’s shortness having been confirmed by my Uncle Ray on Saturday).

So after a good time being had by all we arrived home to find Bud had stamped the bedding with little spots of red, unfortunately he hadn’t used a fabric paint but his own bodily fluid ie, blood.  An inspection of his little furry body revealed a graze on his right rear paw.  However by this time it seemed to have stopped leaking – possibly because the 3,000 spots on the bed had used it up – so we left it alone.  Then later on in the evening I noticed a couple of little spots on the landing carpet near where he was lying so decided action was required.

Okay I admit may just have been an excuse to use this…

It was in our original first aid box and is therefore over 12 years old.  In these 12 years the opportunity to experiment with this obviously useless essential piece of kit had never, ever arose and it had been relegated to a basket in the kitchen cupboard – because you can just have bet that if I’d thrown it away we would have needed it.

The bandage is tubular so how easy would it have been to pop onto Bud’s paw – very, I assume, but since his paw was a tad too big for the tube that knocked that idea on the noggin.  However I was by now unwaverable in my determination to use it in some way, shape or form. Well, that and the fact that we only had a wappingly large crepe bandage that had been tainted with the aroma of citronella or sticking plaster.

Now I have to say that I have limited bandage applying experience (I was going to title this Nurse Paula but decided that was really too much of a stretch).  I have applied them to my knee when I had stitches following the fall off my bicycle (which was adequate – the bandage, not the fall) and on the couple of occasions I sprained my left ankle (which was superb – really, I am your ‘go to gal’ if you ever want an ankle strapped – you even get a free herringbone pattern included – I can’t take the credit for this skill since my Dad showed me how) however it turns out I am not your ‘go to gal’ for getting a bandage to stay on your small furry family member.

Bud was really good at being still whilst the bandage was being applied, and the second one did stay on for at least two hours but then promptly fell off after he’d got on the duvet at bedtime – which worked out really well as one of the prime objectives for applying it was keeping the bed linen clean.

‘What the heck is this?’


‘I can still see it behind your hand.’


‘Okay, let’s play!’


‘Sigh.  I’m not feeling it.’

‘Right, I’ve having this instead…’

‘…it’s all mine now.’

‘Right you’ve had your fun, now pleasssssssssssse take it off!’

Something old.

Dear Auntie Paula,
I thought I would let you know what I have been up to recently. I had a bit of excitement on Monday night, well actually Tuesday morning at 1:30, when I heard a couple of foxes fighting outside the house. I jumped up to look out of the window and there it was, a fox. Being a friendly sort (ahem) I said hello, quite loudly so I could be heard and it looked up at me. Wow I thought, a fox is looking at me, so I shouted even louder and started wagging my tail. I tried to get Mike and Lorna to let me out to play, but they just grumbled about the time and went back to sleep.
The two of them haven’t been spending as much time playing with me recently, so I’ve had to amuse myself. Any way yesterday they were busy and I got bored.
Mom says she doesn’t know how so much stuffing fitted into such a small ball.
Sorry, Mom says it has had it this time.
Hope you, B. and Bud are wellLove Toni x x x