Thursday, 31 July 2014

Ta dah!


And also wa-hey and any other self-congratulatory noises you can think of.  I have finished my pyjama bottoms.  No self-congratulations on the very poor photograph but I'm sure you get the idea.  Here's another crap photo just to make sure


The process was relatively painless (apart from standing on a pin with bare feet) so Coco Chanel had better watch out.  I'm not sure what will be next but keep your eyes peeled for more creations in the understated and elegant discombobulated style.

Not much in the way of health news.  I had a bone density scan recently but apparently it takes about nine light years for the results to come through.  However it's CT scan time again soon so stand by for the usual tetchy nervousness as I await the results.

In the meantime I've been enjoying the weather and earlier this week went on a jaunt to Leominster with Sisses 1 and 2 and Mr Sis 2 (otherwise known as The Sainted One, for putting up with Sis 2 for umpteen years).  We trawled the antique/secondhand shops and I indulged in my addiction for books, pictures and embroided bits and bobs.  If I acqure any more junk the house will burst.

Yesterday I went for an evening drive across the Long Mynd with the other-half.  The heather was out and all was lovely.  We admired the views


and watched the sunset


athen, predictably enough, we headed for the pub.  Night night.

Thursday, 24 July 2014

Monkey business

Three years and one day ago the other-half and I got married.  

aah look, love's middle-aged dream
Yesterday to celebrate, and for reasons to complicated to go into, we went to the pictures to see Planet of the Apes.  I looked up 'third anniversary' and there seems to be some debate as to whether it's leather (oh I say!) or glass.  I think both are wrong  Given yesterday's cinema trip the third anniversary is obviously monkeys.  Incidentally if anyone is feeling the heat in the current lovely weather, may I suggest a trip to the cinema, the air conditioning was so intense yesterday I nearly got hypothermia.

Anyway, as yesterday was my wedding anniversary, today is the three year anniversary of my husband telling me he now had nothing to look forward to (as he'd enjoyed the wedding day even more than me, and that's saying something).  Romance eh?

For even more whinging my latest blog for the online breast cancer magazine, Vita, is now available here.  Have fun!

Wednesday, 16 July 2014

Fancy pants


Hold on to your hats.  I have bought a sewing machine!  As if my adventures in knitting weren’t exciting enough I have decided to diversify. 

I’m starting out with something simple; pyjama bottoms - no button holes, no zips and, hopefully, no frayed temper.  Behold the material I’ve bought.   

Sunglasses on
My plan is that I’ll be able to read in bed solely by the light of my incredibly bright night attire – no lights needed. 

You may think this latest step into the world of make do and mend is foolish on my part, seeing as I haven’t really progressed beyond scarves in the knitting department.  However, I am inspired.  Of late I’ve been perusing (and enjoying) the sort of arty-crafty blogs where the writers skip around their beautiful gardens with a paint brush in one hand, embroidery threads in the other while home-schooling floral pinafore clad daughters with names like Marigold, Petunia and Cystitis (I may have made that last one up). 

While I can hardly compete with those blogs in the angelic offspring stakes I can offer a rosy-tinted shot of Cyril, the three-legged monster cat, in my beautiful garden

Butter wouldn't melt
You'd never know from this photo that Cyril has been to the vet for an infection picked up while fighting again.  He's right as rain now though (after a course of anti-biotics which were next to impossible to get him to swallow).

Anyway, my beautiful garden.  Look how things have come on in the horticultural department:

June 2013

March 2014 (complete with pensive other-half)

April 2014

June 2014


July 2014
Please be especially impressed by the 'memory path' which is filled with odds and ends from beach-combing and the like.


I know all this is shameless bragging but really it's nothing to do with me, it's all the work of the other-half.  Sometimes he has his uses.  

It was a shame then, that on the evening we decided to invite the other-half's family, Clan Wiggins, over it rained buckets.  However, we weren't going to let a little thing like rain put us off and so the other-half erected a make-shift tarpaulin-covered seating area - so the family were forced to sit outside and admire his handiwork.  

The other-half comes from a huge family.  This can make entertaining difficult as my idea of cooking is putting together a cheese and pickle sandwich and I can get even that wrong.  Never, on the night Clan Wiggins came over, have so many boxes of supermarket pre-cooked snacks been opened.  Truly I am the hostess with the mostest.  Some of the family stayed over and although I had stocked up with the ingredients for a cooked breakfast I didn't have to raise a finger as the other-half's sisters rode to the rescue.  Hurrah for the breakfast pixies and many, many thanks.  Without them I'd have been sobbing under the kitchen table having a panic attack.

Lest you think all my adventures have been home-based, I've been out and about.  I've been back to Ludlow and bought yet another hand-bound notebook and gone over the border into Wales to see the the UK's tallest single drop waterfall, Pistyll Rhaeadr

see bloke in red on bottom right for an idea of scale
It was magical, as was the surrounding countryside





If goblins don't live under this tree then my name's not Rumplestiltskin
 We stopped for a cuppa at a nearby (and very lovely) cafe and shared a cake with one of the locals


 We then went on to Lake Vyrnwy and had lunch in a very unlovely cafe.  We should've guessed what it was going to be like given the signs on the path





Once inside there were more signs forbidding you to move any of the tables.  I was too scared to take photos of these as, surprisingly enough, the owners were not very friendly.  We sat outside in a rather rancid marquee type veranda.  I'm really glad the sun was shining as inside the cafe building they appeared to be playing things like this on a continual, hellish loop.  However, even this horror couldn't spoil the gloriousness of the day and the view.

Ignore the power lines, you picky sods
I'm not sure if it was all the gadding about, the side effects of the chemo (still mercifully few) or good old cancer related fatigue but I did end up pretty tired for a good few days.  I was forced to rest up at home and eat food that even I could cook

Many thanks for the spiffy new egg cup J!
But I suspect my tiredness was as nothing compared to that of my ex-husband who ran the Shrewsbury half-marathon in blistering heat for Breakthrough Breast Cancer (a charity I've got a lot of time for), so hats off to him.  Also hats off to Frances, who took part in a recent Race for Life bearing my name on her competitor's bid.  Thanks Frances

That's all the news from Discombobulated Towers for the time being. I'm off to do battle with my new sewing machine in the hope that next time I'll be able to post a photo of my luminous new PJ bottoms.  You lucky devils you!













 

Friday, 20 June 2014

Gadding again



I’ve been gadding about all over the countryside again.  That’s my excuse for not posting recently. 

Apologies for anyone left in the lurch about my latest CT scan results (although I did plaster it all over Facebook).  I've seen the oncologist and there was no change in the cancer, in other words I'm classed as stable (for now) and I can carry on with my current treatment.  This made me very happy.  I would have been even happier if the cancer had shrunk but that’s just me being greedy.

I recently posted a blog entry for Vita, Breast Cancer Care’s on-line magazine, you can read it here.  However, it’s mostly just me whinging on about waiting for scan results which, if you’ve read this blog for any length of time, you will have already endured several times.  So, here’s a get-out-of-jail-free card, you are excused reading the Vita blog.  I’m good to you, I really am.


Anyway, since getting my latest test results I’ve been here, there and everywhere. Well, Birmingham, Yorkshire and Cornwall to be precise.

I went to Birmingham to meet up for lunch with several other women with secondary breast cancer.  It was great to put faces to names (we knew each other from an on-line group) and chat about this, that and the other – and not solely cancer.  While I wouldn’t wish this sodding disease on anyone it’s a blessed relief to talk to other people who know exactly what this whole stage IV cancer malarkey is like.

After that I went up to Yorkshire and what a lovely county it is.

Aysgarth Falls (bloomin' lovely)
First of all we went to the north bit of Yorkshire for a very happy, joyous wedding.  I can safely say this was the only wedding ceremony I've attended where the vicar (a Benny Hill look-a-like) threatened to kill the bride for laughing.  Then on to the west of the county to see my aunty and cousins.  It was a fantastic visit and I hope to go back  again soon to inflict myself on my long-suffering relatives some more.

Then there was just time to squeeze in some hospital appointments (physio and chemo) before dashing off again, this time to Cornwall, where the sun shone and I did lots of Cornwally things which included visiting lovely villages like this one,

I think this was Ruan Minor or maybe Cadgwith
buying a picture at St Ives, eating a pasty, drinking cider and, oh bliss, a cream soda float,

Food of the Gods
getting serious, serious house envy



want one, want one, want one!
and making childish jokes about gardens.


The photo above was taken in the stunning gardens at Trebah.  There's a number of huge plants called gunnera there.  You could walk though a tunnel of them.  This walkway was named 'gunnera passage' which really does sound like some kind of embarrassing disease that you'd put off going to the doctor about until the itching really was unbearable.

I was in Cornwall with the other-half, two of his sisters and their husbands.  I'm afraid they led me astray and drink was taken.  I had a brilliant time, the sort even having just one toilet between six adults can't spoil (Bear Grylls has got nothing on me).  I'm not sure whether the highlight of the stay was the other-half slumping over the stable door to our cottage in an effort to make passers-by think he was dead or the time when he, half-cut, decided to drop his trousers to show off his knees - which were stained a patchy rust-brown by his cack-handed and ill-advised use of my self-tan lotion.  Happy days.

Anyway, I'm now back home surrounded by sisters (all three of them are in Shropshire at the mo) and enjoying the sunshine.  Don't worry I'm sure I'll revert to my normal moaning for the next post.  Later taters.


Wednesday, 14 May 2014

Stomach in knots

The knot garden at Sudeley Castle (review: grounds lovely, museum um a bit of on the scatty and smelly side)
Oh my giddy aunt, it's that time again.  I've had a CT scan and am now in a state of scaniexty, waiting to see the oncologist next week for the results.  This is pretty much the lot of someone with secondary breast cancer - scan, treat, repeat.  (I nicked that phrase from the excellent Metavivor website just in case you thought I suddenly come over all sharp and snappy.  Don't worry, no danger of that happening anytime soon).  Anyway, as I said, it's scan, treat, repeat that is, of course, until the 'treat' options run out.  I've written before about the horribleness of waiting for results, here, for example.  However, I've found someone who sums it up a million times better than I ever could.  If you want to see what I'm talking about have a look at this short film from the brilliant Katherine O'Brien, author of the I hate breast cancer blog.

While I'm in my default mode of moan, moan, moan.  Jenni Bloody Murray.  Yes, again.  If you don't know what I'm talking about this should explain it or have a look at my latest post for Vita (the online breast cancer charity magazine for a more restrained version).  Amazingly, given her views, Jenni Bloody Murray is listed as a 'celebrity supporter' by a breast cancer charity called Breast Cancer Campaign.  Click here for the evidence.  I contacted the charity to ask why she still appears on their website after she'd expressed sentiments which, I think, are pretty offensive to anyone with secondary breast cancer.  I got a predictable 'we-don't-agree-with-her-but-she's-entitled-to-her-own-opinion' response.  So what now?  Do I 'let it go' and move on or stand my ground and argue the toss (probably to no avail).  At the moment I'm pursuing a third option, which is to do absolutely nothing other than seethe inwardly in a self-destructive and unhealthy fashion; a course of action that I feel is much underrated and one I'm very good at.  

And, lest after all this whinging, anyone feels the urge to counsel me to 'be positive' may I please draw your attention to this post from the Telling Knots blog which says it all.  I should point out that I'm lucky enough not to be surrounded by the type of people who come out with the positivity stuff and have had had very few encounters where I've been admonished for not being a little ray of sunshine.  So no-one reading this who knows me need feel guilty (or angry)!

It's not all scanixety and seething here at Discombobulated Towers though.  My broken wrist is on the mend and  I've been to the Cotswolds on a sunny springtime day:


While in the Cotswolds I bought a guidebook which contained a typo that gave me hours of amusement.  See below. 

Look, I've never claimed to be sophisticated


Finally, in an effort to cheer myself up this morning, I went internet shopping and ordered a pair of shiny bright yellow sandals.  So place your bets as to what gets me first - cancer or the fashion police.

Monday, 28 April 2014

... and breathe

Picture from here

Did you think I'd got all the anger out of my system with my last blog post  Well more fool you.

For those who haven't been keeping up (if not why not) in my last post I was dismayed, angry and generally pissed off about the National Institute for Health Care and Excellence's(NICE)decision not to approve use of TDM1 by the UK's National Health Service (NHS).  TDM1 (trade name Kadcyla)is the chemo I've been lucky enough to have been receiving, at the drug company's expense, for 10 months as part of a clinical trial.

I realise that not everyone who reads this blog has cancer or lives in the UK, so rather than labour the point I will give you the bare bones here but will provide more ranting detail in my next blog post for Vita online.  Rest assured I'll be tedious enough to post a link here once it's published (or indeed written).

NICE say that TDM1 is, at 90,000 pounds per person, too expensive to approve for NHS use.  The drug manufacturers, Roche, say they have to recoup their research and development costs.  

I believe that there are debates to be had about NICE's criteria, the price set by Roche and what the NHS should and should not be funding.  But the bottom line is that there are people out there who will  die sooner than need be because they cannot access this drug on the NHS.  Appalling.

I am not sure how useful the following are but here are some actions those interested in all this could take:
  • A petition asking Roche to lower the price - click here
  • NICE's TDM1 appraisal consultation.  Long, complicated but open for comments until 19th May - click here  
  • Breast Cancer Care (UK charity) will be responding to NICE's appraisal and, as part of their response, will tell NICE just how many people have contacted them with their concerns.  Breast Cancer Care can be contacted at
    campaigns@breastcancercare.org.uk
  • Write to your Member of Parliament - click here for website with contact details
I hope you're admiring my restraint so far.  I've hardly even sworn.  Ah, but something else, happened which sent my blood pressure through the ceiling and my language into the fucking gutter.  An article by Jenni Murray was printed in the (shudder) Daily Mail.  For non-UK readers the Daily Mail has a truly terrible reputation for printing all sorts of nasty stuff (click here for an old but accurate musical portrayal of what they are all about).  

The article expressed the opinion that NICE were right to turn down TDM1.  Fair enough, everyone's entitled to their opinion (especially me) but, dear God, the things the author of the piece said!  Read it, if you dare, by clicking here.

I have rarely been as angry as when I read this.  I haven't done a massive amount of crying since this whole cancer malarkey started (preferring the crazed rabbit in headlights response)but this reduced me to tears of fury. 

To refute everything I'd like to in Jenni Murray's vile, inaccurate and sanctimonious piece would take me several more paragraphs and try your patience to breaking point.  Let me just say three things:
  • I have had ten fantastic months on TDM1 and am certainly not the 'ravaged' pathetic creature portrayed by Ms Murray, spending my extra months waiting to die.
  • Neither I, nor anyone I know with secondary breast cancer, is under any illusion that the disease will spare us.  Treatment is to extend life not a 'false hope' that it will be a cure.
  • If any life-extending treatment for people with a terminal illness is a 'false hope' then presumably the author advocates withdrawal of all treatment (beyond pain relief) on diagnosis.  Nice.
Finally a more general point, don't forget, when working out how much we feckless cancer sufferers are costing the state, that many of us won't live to collect our state pensions.  The pension is, I believe, 113 pounds a week.  Let's say I'd had a normal life expectancy and collected my pension for 15 years, that's 88,140 pounds.  Shall we call it quits?

OK, I've stopped.  For now anyway.  Hopefully the cat or the other-half will have done something disgraceful by the time I next post so I'll be able to tell you something at least slightly diverting.  However, tomorrow I'll be seeing the surgeon who operated on my broken wrist.  Unless said surgeon, known to the other-half and I as Lee Van Cleef, tells me my wrist has healed incredibly well and the plaster can come off for good you may well get more moaning instead.

Wednesday, 23 April 2014

Shitheads

Since June last year I've been taking part in a drug trial for a chemo/targeted therapy called TDM1 (trade name Kadcyla).  This time last year I couldn't walk up a flight of stairs without panting for breath due to the spread of breast cancer into my lungs.  I knew it was getting worse.  I was unwell and frightened, especially as I had previously been treated with two other types of chemo without a great deal of success.  I know this disease is going to kill me but it seemed the end was hurtling towards me at speed. 

However, since starting TDM1 last year, I have had three CT scans.  These scans have shown either shrinkage of the lung mets or stability.  My breathing has improved significantly and I'm able to get out and about, enjoy life and not quake in fear at the sight of a staircase.  

In the United States TDM1 is approved by the Food and Drug Administration and has been available to people there since February 2013.  While TDM1 doesn't work for everyone, I've read, on US online forums, of numbers of people who have had several months of improved health due to TDM1.

Here in the UK TDM1 has been undergoing consideration by the National Institute for Health Care and Excellence (NICE).  NICE  determines which treatments will be provided and funded by the National Health Service.

Today NICE have announced their decision NOT to approve TDM1.  It's not cost effective you see.  I have to say this isn't a massive surprise.  NICE have a bit of a track record for this sort of thing, click here for how they turned down another treatment for secondary breast cancer, Perjeta. 

Am I angry?  You betcha.  I don't think I can express how angry I am.  Certainly not without swearing.

The 'problem' with any treatment for secondary breast cancer is that, at best, it's going to extend life NOT be a cure.  I sometimes think it would be easier for NICE to just issue a blanket statement to people like me with incurable cancer along the lines of 'you're screwed so why should we pay for a few months of extra life'.  How dare these callous fuckers sit in judgement on the value of a chance at an improved and longer life for those of us already facing a massively reduced life expectancy.

Even if, God forbid, TDM1 stops working for me tomorrow, I am immensely grateful for the last ten months of relatively good health and the chance I've had to enjoy being with family and friends,  living a 'normal' life and making memories.  Yet NICE seem to be able not only to put a price on all this put to determine it's not worth the financial cost.  What a bunch of bastards.

TDM1 is expensive at 90,000 pounds per person per year.  Knowing nothing about the drug company's research and development costs etc I've no idea if this is exorbitant, but I do acknowledge the drug companies are not generally known for their altruism.

However, the bottom line is that a drug that enables some patients more time with their friends and families is being denied to people.  In my book that's immoral.

This decision isn't going to change my treatment as I'm lucky enough to be on a drug company funded trial but is very bad news for anyone in the UK who thinks TDM1 might help them.  If you are in this position I would urge you to ask your oncologist if places are still available on the trial or to access funding, if you are based in England, through the Cancer Drugs Fund (this fund is due to cease in 2016).