Tag Archives: myeloma uk

It’s a glum bum day

I was intending to share the whole peritoneal dialysis fluid exchange procedure today – I mean it may come in handy one day – there could a question in a quiz – if it involves a lot of money though remember where you read the answer!

Instead though I decided to do a crafty post to brighten me up as the weather, Bud and my mood turned glum as the day went on.  Actually with me it’s more tired and has nothing at all to do with a late night and early morning!  With the weather it started all bright, sunny and quite warm this morning (as evidenced by no coat needed when Bud pressured me into taking him for a wander in the wood) but by lunch time it was bucketing it down and all gloomy.  With Bud its the fact that B didn’t take him for his regular walk – due to the weather!  In fact it was Bud’s expression when he realised he wasn’t getting a proper trip out that made me think of the word glum – he sat there with the most pathetic look on his face and looked a right ‘glum bum’.

I needed a quick baby pattern to knit for one of the ward nurses who was leaving to have a baby – funnily enough.  As I’d got some aran weight cotton in I decided to give Trellis another go. I altered one of the cable patterns into a more conventional four stitch cable rather than a travelling twisted stitch…

and repeated the cable on the hat with moss stitch in between.

It got Cairngorm Reindeer Herd buttons – I don’t know what I’m going to do when these run out.

The whole cardigan is knit on 4.5 mm needles with no increases once past the ‘rib’ but this results in the following…

so on the fronts and sleeves I reduced the cast on stitches only by two or three and then put then back before I started cabling and this sorted out the wibble.

I’ve also finished my latest bits and pieces afghan which turned out a ‘bit’ bigger than I was aiming for at 84 cm x 152 cm (33″ x 60″).

That photo doesn’t really do it justice so here’s some others…

Chris, the friend who was partly responsible for my late night yesterday, said the pink and blue centred rectangle above was her favourite or wait, was it the purple and purple one?  I don’t know now – she liked a lot of them.  What we both liked though was how using the yarn like this enabled colours that you wouldn’t necessarily put together to work – well we thought so.

I had thought this would use up all my outstanding ‘bits and pieces’ and I could bin the remnants but I still have too many to throw away with a clear conscience.  Since I need a trip to The Knitting Centre before I can start the next batch of things I’m making I started another blanket to use up absolutely all of them.

I’m doing a single alternating row of four different colours (if that makes sense) and intend to just carry on until each colour runs out and then add in another one.

As you can see it results in a lovely tangle of wool – me no likey that at all.

Now although this way of doing things should also let me put all sorts of colour combinations together I think this one may be too BRIGHT.

And it’s not even my Myeloma UK Myeloma Buddy orange – this one is nearly flourescent – I’d love to know what the rest of the ball made.

Now I need to get an early night as I have my big day out tomorrow.  B said to me before ‘Will you be taking your anti sickness tablets?’  I said ‘Yes’.  Then he said ‘What about anti ageing ones?’ I said something that can’t be repeated in polite company.

Lots of Buddies

We’ve had a spate of Myeloma Buddy production going on over the past few months.  If I’m a bit stuck for something to take out with me or just need something small I knit a Buddy.  When I was thinking of posting the pics I realised that I’d never said where the orange Myeloma Buddy army went last year.

The 100 Buddies were ordered by Myeloma UK – orange or rather ORANGE being their corporate colour.  They are available direct from them and are listed in their site shop right here.  They’re also for sale at their Info Days.

While I’m at it there’s also a link to my Buddies in the FUNdraisers section of the IMF site (International Myeloma Foundation that is not the better known but less fantastic International Monetary Fund).

Mmm, wonder what one would look like in fabric?

Other creative spaces are here.

When I went for dialysis today I asked about the results of the 24 hour wee collection from Monday.  Apparently the level of toxins in it that my kidneys had filtered is not yet normal but is going up.  The blood test showed my calcium level is on the low side even though my Calci-chew dose was increased three weeks ago from 2g a day to 4g so the nurse said she’d get a doctor to review it when I went in on Saturday.  

The value of a life

Well it looks like we’ll have to wait until Friday for the conclusion of the Wedding Daze trilogy.  I don’t tend to type ahead – I’ve done it very occasionally but it doesn’t seen to work for me.  So I sat down to do it when B went to work but intended get rid of some paperwork beforehand.  While doing this I decided to watch Should I Test My Genes in BBC iplayer – a friend watched it last night on the TV and said it was interesting.  I happened to google the writer as I thought Chris has told me he was a doctor but I wasn’t too sure about that.  As it turned out that he was science writer Adam Wishart who was the responsible for the award winning documentary The Price of Life which was broadcast in 2009.

I had read about this in the Myeloma UK newsletter and it had been seen by the same friend at the time it was first broadcast.  I however had never even felt the urge to see if it was still available online and now I’d just stumbled upon it.  It’s about the approval by NICE (National Institute for Health and Clinical Excellence) of drugs for use by the NHS and features the assessment of Revlimid (Lenalidomide).

The interim decision made by NICE was that Revlimid would not be available because it was not cost effective at the price requested by Celgene and the Government does not allow NICE to negotiate price reductions with drug companies – well yes, that makes a whole lot of sense.   However after a change in the rules the £30,000 per patient per annum cap was lifted for end of life drugs which applied because Revlimid was deemed as being for patients who hadn’t got long to live and I just loved the quote…

‘The question boils down to this – how much more valuable is one year of your life when it comes at the end of your life.’

Apparently for a myeloma patient needing Revlimid a month is worth 1.4 times that of a ‘regular’ patient.

Celgene had however helped out by offering the drug free for each patient after the NHS had paid for it for two years but even with this it came down to a nail biting finale (yes even though I knew the outcome and I’m not a nail biter I was almost sorry I’d cut them yesterday). The votes cast were nine for and nine against with the chairman making the casting vote – it was (obviously) approved.

I found the whole thing quite disturbing.  My life is in the hands of my doctors and, although I ask questions, I trust them with it.  However to think my life could at some point be in the hands of the NICE process was frightening.  At the risk of being sued or making any dockers reading blush I will keep my more colourful comments to myself – although I didn’t before as evidenced when Bud felt the need to leave the comfort of the bed three times to come and check everything was okay – I don’t raise my voice or curse venomously often but he doesn’t like it when I do and you know – it’s not NICE!

Myeloma UK Take 2 Campaign

Last week I followed a link on facebook, posted by Deb who is about to start treatment, to the little video for the Take 2 Campaign.  This aims to raise awareness amongst GPs about myeloma to avoid delays in diagnosis.  Apparently, approximately 20% of people diagnosed die within 60 days!

I noticed the ‘Does your MP support TAKE 2?’ on the right hand side and my MP was not on the list.  Knowing that he is up for these sort of things as I have seen him on lists before and have written to him about animal welfare issues in the past I emailed him on the evening of the 15th and got this on back on Saturday…

Isn’t he just so nice especially since he did this despite me confessing I hadn’t been able to vote for him in the General Election – well I did have a valid excuse I was on my SCT holiday – although I guess I could have sorted out a postal vote!

Oh and he isn’t crooked – it’s just the way I scanned it!

Myeloma Buddies

The To Do List nearly finished B off this morning as I lost my pictures for the umpteenth time and therefore I took the hint and gave it a rest for this week.  I was however going to show these separately because they are sooooooooooooo cute they deserved their own spotlight.

As part of the stuff I did for the lady who is having the fun raising event today  for Myeloma UK (yes I said fun that was Roz’s mis-type originally and it sounds so much better than fund raising) I attempted to knit yet again to knit for want of a better word dolls.  I don’t really do knitted toys.  The ones that look really good are quite time consuming like this…

     

or I once tried quick knit Teddies for Tragedies and to be honest the ones I did were more likely to cause a tragedy than bring comfort after one.

 

They are all knit in double knit yarn but can you guess which ones I washed after knitting?  Anyway we shall never speak of these again!

However I attempted to give it another go and here’s the result.  This is the first one I knit keeping an eye on me whilst I was working…

Here’s one a friend adopted and named Sweetpea…

Here’s two in the colours of Myeloma UK and the official colour for myeloma (who decides these things?)

And then I got a bit carried away…

I really like these, so much so I have listed them on my etsy shop with the profits either going to Myeloma UK or MMRF.

 

To Do List 8 – Times on List in Brackets

New

* Discover cause of myeloma – what the hell – you’ve got to dream big – although this one might be on the list for a while ;o)

Still Hanging About – not started

* Don’t postpone doing To Do List in an attempt to mark something off it!

Still Hanging About – but started

* Aran cardigan for me in rose tinted colour (6) – it’s a good job it’s getting warmer

* Post patterns and knitting to Ravelry (6) – now still got five knitted items on

* Make 3 baby presents (5) – one actually started!

* Make cards and other stuff for lady who is fund raising for Myeloma UK (4) – have now make progress with this one

Done

* Power of Attorney for mother in law

* Make cards for Sunflowers Centre – I only finished eight and was still carding when my lift arrived. They seemed to go down well I got a hug and told they were lovely/beautiful on three separate occasions, so she either like them or was a very good fibber!

To Do List 6 – Times on List in Brackets

New

Nothing

 Still Hanging About – not started

 *  Make 3 baby presents (3 – the age they will be by the time I’m finished)

*  Make cards for Sunflowers Centre (2) – still ASAP – meeting next Tuesday – gulp

* Make cards and other stuff for lady who is fund raising for Myeloma UK (2) – by end of month (didn’t say which month but did mean February!)

 Still Hanging About – but started

 *  Aran cardigan for me in rose tinted colour (4)

*  Post patterns and knitting to Ravelry (4) – now got five knitted items on

* Power of Attorney for mother in law – awaiting certification from GP (this seemed a bit easy to fill in so I’m sure I’ve mucked it up somehow)

 Done

 *  Sister in law’s birthday present – allegedly loved

 

Suspended

 *  Pattern for colourful baby blanket in squares (3)