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.

Scrappy Squarey Doh!

In answer to Fiona‘s question from yesterday as to ‘WHAT HAPPENED’ with the m-i-l and B at the doctors.  I didn’t know at the time I popped it on my blog as their appointment was only 16:00 so I was on tenterhooks as to the outcome. Well the GP ‘lol’ed at the note, and then B asked for it – so I was confronted with B extracting the note from his pocket and reading out ‘Bernard has the retention quality of a distracted three year old unless it involves pretty women.’  To which I said ‘Hey it could have been worse I was going to say Page 3.’  Needless to say it was the running theme of numerous comments between then and him going to work.

With regard to the m-i-l, my behind is safe from being exposed to shoppers, as the ‘fungal infection’ was a just a big fat nail that needed filing.  {smug expression}

So to my creative space this week – it’s a bit of a tip, but better a creative mess than neat un-productivity (or something like that).

On the ironing board is a backing for a quilt whilst on the window ledge is 83 Share a Square squares…

Which brings me up to 149 with the total requested from any participant being 150.  I had a bit of trouble with my 150th.

Its one and one quarter rounds short of a full square – I must have been over generous with the tails on the last batch.

Fortunately I found this novelty yarn and with some creative usage (and a tail of about two inches left of it – phew) I managed to finish square 150.

The quilt backing is for some scrap quilts I must have started at least three years ago.  I did finish the top for one…

but since I had all these left from dresses I’d made years before (my Great Auntie Bet always told me to save excess material just in case the garment needed a repair in the future – what I don’t know – but she was alive during WWII rationing and so on numerous occasions was able to show me that a pattern positioning was wasteful and if I did, this, that and that I’d have plenty left over) and since they are in the main lovely crepes I’d hung onto them, even past the expiry of some of the dresses.

All I managed to do yesterday was fill the 3′ x 4′ backing with pieces…

Yes I know they need a serious pressing but they have been screwed up in a box for a long time.  I thought if I could get them finished this weekend they could go to South Africa with the other stuff I’ve given to our GP’s receptionist.  We’ll see.

I have an appointment at the Royal this afternoon regarding the numbness in my forearm, that’s still there, and I also have a numb bit on the right side of my chin and an intermittent numbness to the pad of my left thumb!  I’m going with a friend and I forgot to ask if there’d be eating out involved.  Doh – I must get my priorities right!

Other Creative Spaces can be found here.

Dear Doctor

You may remember, and if not –why not, that the last time we saw the Prof at the Royal he referred to me as ‘intelligent’ (or, as per accompanying friend’s recollection, very intelligent) however it would appear that B’s brother finds me incapable of recording and passing on a message.

B’s brother rang on Monday to ask (tell) him if he could make an appointment to take the m-i-l to her GP’s as she had a fungal infection in her toe nail.  So I rang up yesterday morning and after taking the second appointment offered, B then rang his mother and then rang the GP’s receptionist back and re-took the first!

At 12:05 today B’s brother rang and asked if B was up.  I said no, whilst resisting the urge to ask what the heck would he be doing up at noon on a work day and that he would be getting up at 14:30.  (I mean he only gets in at 07:50, after food shopping, and had missed breakfast to get to bed earlier than usual to ensure he was up in time.)  So B’s brother started to tell me what he wanted B to say to the GP (along with the toe thing) and when I asked questions (we all know how unlike me that is) he decided he’d try and ring back to speak to B before he left to pick the m-i-l up.  He did but our phone is dodgy (really it is, really) so he left a message that was so complicated I couldn’t have passed it on (despite doing shorthand).

I asked B if you wanted me to do a note to the GP and he said yes.  I wasn’t too sure he was serious or not, but it turned out he was when he asked for it just before he left – so I drafted a quick letter and decided to share it with you – basically, so you know the reason for my impending sudden disappearance.  I would point out that I have met the GP they are seeing and he does have a sense of humour, it was in a sealed envelope and B has strict instructions not to open it before they get in and certainly not in front of his mother!  So I’m completely at the mercy of the GP as to whether they find out what was in it!

Dear Dr S

Bernard’s brother asked if he could bring their mum to see you re a fungal infection on her toe nail (he didn’t say which one).  He also asked if, as she was housebound, the district nurse could call out daily to administer treatment. 

He rang us today to ask if Bernard could ask you to register that she was housebound so that any attention she needed in future could be carried out by the district nurse at home.  I understand she has been going to the walk-in centre for a dressing changed on her leg following a fall and he wanted this to be carried out by the district nurse (as it’s only been convenient to do this because our nephew has been home from Uni).

Despite 103 hospital appts with me this year (okay slight exaggeration) Bernard has the retention quality of a distracted three year old unless it involves pretty women hence this note.

I have no idea if Billinge still has a district nurse or if so whether they would do this sort of thing.

Yours sincerely

Paula Kilgallon (darling daughter in law)

PS – I have told Bernard that if it involves Mary’s big toe this may not be a fungal infection as the last time I took her to the chiropodist (last year) this was discussed and they said it was the result of an injury to the nail bed and filed the nail down.  (I did also say that if it was a fungal infection I’d show my ar… behind in Woollies window* so would be grateful if you could bear this in mind in arriving at your diagnosis. ;D)

*  An expression used only when you felt quite safe that your rear end wouldn’t ‘end’ up on display to passing innocent shoppers.

Undressing Dolls

Whilst at the show on Saturday I asked when the booklet was published giving details of the categories – turns out its April.  That provides a whole five months preparation time as opposed to the two days I had – my own fault I know.  So the only thing I made specifically for the show was this little bunny.

Everything else was just stuff I’d made that I still had hold of at the time.  Apparently the categories are mostly the same but last year’s Needlepoint Item became this year’s Handmade Toy.

The only item I started last year with the view of finishing in time for this year’s show was a lace shawl and that got as far as 26 rows so not much of a finished item there.  So with that in mind I decided that whatever the categories for next year I won’t purposely make something purely for the show I’ll just make stuff I like and hopefully there will be enough suitable categories for me to win, er I mean enter.

With that in mind my biggest weakness is Handmade Toy – I don’t really do sewn toys of the detailed calibre of Auntie Eleanor…

Does this count as rag doll pornography?

 A full head of hair despite the bonnet and even an additional line of wool to cover the parting

This is the INSIDE of the underskirt – which has a lined bodice and super neat finish where it meets the skirt

A couple of pin tuck pleats on the bottom of the skirt and a lace trim

I finally persuaded her to put on her dress and bonnet but she insisted on showing off her little felt shoes

And here’s her little embroidered face with felt cheeks and eyes which are surrounded by tiny, tiny blanket stitches

Heck whenever I do dresses for me it tends to be in a rush so even they don’t reach the fine finishing standard of Auntie En’s doll’s underskirt. So I’ll have to give this category some serious thought as I know full well I haven’t got the patience to produce a sewn doll anything close to this.

I would also point out that when I was little and relatives started going abroad on holiday (which was a rarity at the time) they would bring back national costume dressed dolls for me.  I was given a Greek one, a flamenco dancer, a Scottish piper, a Welsh lady (okay those two are not technically abroad) and one in a pink sparkly dress.  I have no idea where that one was from possibly because by this point in time dolls were confiscated before I could get me little paws on them.  As we know I have a curious nature and which extended to wanting to know what was under the dresses and of course these dolls weren’t to the calibre of Auntie En’s with buttons and ribbons – they were glued so as you can imagine when I’d finished with them they didn’t look quite the same as when they started out.

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?


My crafty entries

Here’s the stuff I’m entering in tomorrow’s Village Show.  You’ll have to excuse the doll’s somewhat un-chaste demeanour – I wanted you to see her underskirt (which is a full one) and her bloomers.  I have to admit I didn’t make her – she is my Auntie Eleanors’s creation.

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Please bear in mind if you comment that I don’t want to read the words ‘over the top’!  I was going to cut it back and save some for next year but then I thought ‘Hey, seize that carp, you might get hit by a bus before then.’

Buddy Free Crochet

Once I’d got some sleep and extracted Bud from my crochet blanket I took some new pics.  As I mentioned the majority of these squares started life this time last year with a view to travelling across the pond to Shelly in Texas to become part of the whole Share a Square experience however I did them in the wrong weight yarn – worsted in the US equals aran in the UK not double knit as I originally thought.

When our doctors’ receptionist mentioned that a container was going over to South Africa in the next few weeks this gave me the impetus to provide them with a trip across a different ocean.  However they were quite different and looked a bit disjointed when put together.  They did look more disjointed but I only thought to take a photo after I’d already used some up.

So I took a leaf out of how Shelly has dealt with squares in previous years and decided to add a border to all the squares in one colour.

I went with a navy blue edging as I thought a dark colour would work better than a light one and I think it worked (in my humble opinion).

I am quite fond of these squares which hint at a flower while just being basic granny squares with the ‘flower’ centre being in novelty yarn surrounded by a ground of green ‘leaves’.

Coming Soon! – I’ve also done some little cardys which are knit all in one for the same shipment and the, no, THE cutest little crocheted ‘wellies’!

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!