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).







Sunday, 20 April 2014

Modern medicine - hurrah!

Dr No!  Picture from here

Following my trip to and in Cornwall I have now had surgery on my poor brokey wrist (that's a medical term).

I was due to have a steel plate inserted on Thursday but after three hours sitting on an uncomfortable plastic chair in a crowded waiting room, dying for a cuppa and something to eat (I was doing the nil by mouth thing), I was told that they would not be able to operate until Saturday.  Big sigh.  I am a huge supporter of the National Health Service (NHS) but sometimes it does cause me to grind my teeth (and that's a real pain when you can't get a local NHS dentist these days for love nor money).

Anyhow come Saturday I went straight onto a very quiet ward to await surgery from the comfort of a hospital bed.  A nurse told me that the surgeon would come to see me before the op and both I and the other-half misheard his name as Mr Van Cleef.  This was somewhat alarming as we expected a sinister looking cowboy to swagger into the room.  Thankfully we had misheard and although Mr Van Thingy did indeed swagger into the room (with a crowd of junior doctors or students hanging on his every word) he did not glare menacingly at me from beneath a black stetson.  It would have been nice if he'd explained who his hangers on were or maybe even introduced them but, hey, at that stage I was just glad the ball was rolling and it didn't look like I was going to get shot.

So the surgeon strode off, the other-half went home and I settled down to read my book while waiting to go down to the operating theatre.  'Merivel' by Rose Tremain is hugely enjoyable (one reviewer described it as a 'melancholy romp') but bearing in mind the main character is a seventeenth-century physician it probably wasn't the best choice of reading matter given my situation.  In fact as I sat propped up in my bed I read about a breast lump removal operation olde-worlde stylie.  It can be summed up in three words: laudanum, agony, screaming.  Just as I finished reading this section the anaesthetist came to check me over.  I think he was somewhat surprised by my happiness at his arrival.  In fact had I had two functioning arms I would have grasped him in a bear hug and grappled him to the floor in joy.  As it was I just beamed dimwittedly at him and happily agreed to have the knock-out juice administered into my foot.  (Options were limited as one arm was about to be operated on and the other was off limits because of the risk of lymphedema following last year's mastectomy.)

The operation went ahead with no problems and took place early enough in the afternoon for me to be discharged without an overnight hospital stay.  While I was waiting for the all clear to go home I continued reading the book (oh come on, I had nothing to lose at this stage) and read about a filthy seventeenth-century London hospital full of fleas, mice and a dead cat under the protagonist's bed.  Thankfully my ward seemed scrupulously clean with no wildlife of any sort alive or dead.

So I'm now back home, full of pain killers, an arm back in plaster being waited on hand and foot by the other-half.  Life is sweet.

I'm due to have chemo on Wednesday and while the surgeon sees no reason why I won't be well enough to have it, there is the vexed question of where they are going to stick it (if you'll pardon the expression) as I have a forbidden arm (see above) and the other arm in plaster.  Oh well, I deal with that knotty problem next week.  It's just one thrill after another.

Tuesday, 15 April 2014

Sympathy please!

 
Not Cornwall.

I've been to Cornwall for a few days.  'Cornwall?' I hear you cry, 'why, how lovely!'  And yes, you are right, it was lovely.  I stayed in beautiful Polperro and the weather was glorious.  However, the visit started and ended on a low note.

Firstly I forgot my camera.  I was in Big Trouble with the other half for that.  As I have no photos I shall paint a picture with words.  To fully appreciate the following poetic masterpiece you need to know that the Cornish town Fowey is pronounced 'Foy' (to rhyme with boy).  Now without further ado

Ode to Cornwall
Fowey is a joy
and Polperro
made me mellow.
But Looe was poo,
and St Austell?
I'd rather be in Borstal. 

Truly, my talents know no bounds.

After a lovely stay, just before I was about to come back to Shrewsbury, I fell over.  I hurt my wrist.  A lot.  As I hit the ground I used the sort of language that would make a salty old Cornish seadog blush.  And quite rightly too as it turns out.  My wrist hurt more and more and looked stranger and stranger during the course of the five hour trip home.  

Once back in Shrewsbury I headed for the hospital where, after a fair amount of waiting about, I was told I had a broken wrist and was walloped in plaster.  After a follow-up trip to the hospital today, I was given the dismal news that I need surgery and will be having a steel plate put in later this week.  The 'silver lining' (of sorts) is that I will still be able to have chemo, as planned, next week.  My cup runneth over.

So now, while you are all feeling sorry for me, I urge you to rush off to read my brand new blog post for Vita Oline, a breast cancer magazine.  Click here to make an old lady slightly less grumpy.

Wednesday, 9 April 2014

The unexplained


A mystery greeted me this morning when I walked into the kitchen.  The floor was covered in feathers.  At first I thought, with horror, that Cyril (three-legged monster cat) had finally got the better of his arch-enemy Fat Pigeon.

Fat Pigeon spends a lot of time in our garden, largely because I put bird food out for him.  Cyril hates Fat Pigeon with a passion.  He has been stalking him for months but, as Cyril has only three-legs and no wings, he's never got within a few yards of his prey.  Fat Pigeon watches Cyril's attempts at hunting with a contemptuous look in his beady eye.  This hasn't helped their relationship.

Anyway, when my eyes finally focused (it was early and I hadn't had my first cup of tea yet), I realised the floor wasn't covered in feathers, it was fur.  And black and white fur at that (Cyril is black and white).  However, Cyril was intact, unmarked and asleep on my bed.  While I was standing there dazed and confused Cyril lolloped downstairs from the bedroom to demand breakfast.  He sat amongst the fur looking very pleased with himself.  





I can only assume another black and white cat came in through the cat flap in the dead of night, had a very quiet scrap with Cyril, and departed with a lot less fur than he had when he arrived.  That or perhaps Cyril's opened a night-time cat barbers in the kitchen.  After all "there are more things in heaven and earth, Horatio".

Speaking of Shakespeare (see what I did there) my next blog for Vita has been accepted and will be online next week I think.  Rest assured I will bombard you with links.  In the meantime, the old one is here.

And while I'm on the subject of blogs, I've recently found some more by people with secondary breast cancer, hurrah!  That's hurrah for the blogs not the cancer.  I've added them to the list on the right hand side of this page.  So do have a look if that's your kind of thing.

Wednesday, 2 April 2014

Gardeners' Question Time

A couple of posts ago I wrote about how the back garden has looked like this



ever since the builders left, after using it as a storage area, last June.  This despite the fact that the other-half used to garden for a living.  Well I'm pleased to say he finally ran out of excuses (one being 'I've got gardeners' block') and now it has been transformed.  

Behold the new garden:


Ha ha ha.  I am very funny.

Actually it looks like this:


It all looks a bit plinky plonky at the moment but once the plants start growing it'll be a thing of beauty.  We haven't replaced the grass opting instead for flowers in the hope of encouraging bees.  This may be a tad foolish as the other-half is wildly allergic to wasp stings.  He's never been stung by a bee so we've no idea how he'd react but maybe I'd better think about life insurance.  The eagle-eyed among you may be wondering why there is an unconnected shower head fixed to the shed (far left).  It's because, here at Discombobulated Towers, we are not afraid to embrace the twee.

Talking of twee I went shopping in lovely Ludlow the other day.  I meant to buy sensible things like toilet rolls and socks.  Instead I came home with a handbound notebook, a quince for the garden and an hourglass.  That's just the kind of town Ludlow is.  I've been sad enough to check and it actually takes 62 minutes for the sand to trickle from the top to the bottom of the hourglass.  Should I ask for a refund?

I had chemo yesterday and, after feeling like a dog's dinner last time, I am stuffed to the gills with anti-nausea medicine.  On the plus side I have spent the day lying on the sofa with the cat, a packet of ginger biscuits and a book about the nasty Normans duffing up the Ango-Saxons.  I've had worse Wednesdays.

Monday, 17 March 2014

Fruit, falsies and fame

Thirteen days into Lent and I'm still being saintly and not playing Fruit NinjaI have found myself doing more juicing but sadly chopping up real fruit isn't the same at all.

A very poor Fruit Ninja substitute
The other half has given up chocolate and puddings.  This has led to some heated debates as to what is and isn't included.  Apparently it's alright to eat cheesecake and chocolate flavoured biscuits.  Yeah, me neither.

Opening the post today was massively exciting.  My knitted knocker arrived.  I tried to take a photograph but just couldn't do it justice.  Knitted Knockers knit or crochet prosthetic breasts in an amazing range of colours (mine is stripey!) and, best of all, charge nothing whatsoever for the service (not even postage).  What a bunch of good eggs they are!  Find out more about them and their fantastic knockers by clicking here.

Also today fame came knocking at my door.  And me, being the shrinking violet that I am, have been Facebooking and Tweeting about it all day.  So, apologies to those of you who've heard it already endless times, but I'm now writing a blog for Vita, the online magazine for the Breast Cancer Care charity.  I'll be writing one blog post a month for them for the remainder of 2014.  To see my March effort click here.  And to think you lot knew me when I was nuffink!  I'll still be blogging here though so, one way or another, there is no escape from me.

Wednesday, 12 March 2014

Challenges



Challenge 1

A thousand years ago (oh alright, last year) we had building work done at Discombobulated Towers which, although a lengthy and often infuriating process, resulted in me having the Best Kitchen in the World (I might be a tad biased on this one).

The only problem has been the total destruction of my garden.  The tiny garden was the only place the builders could store their materials.  So it went from something like this




to utter devastation.  However the builders finished and moved out months and months ago and yet the garden still looks like this


Ok,  he's painted and moved the shed but let's not split hairs

Given that the other-half used to garden for a living this is a very sorry state of affairs.  Initially he claimed to have gardeners block, then he told me he’d lost his gardening mo-jo (full marks for inventive excuses).  Then, just as he’d got his motivation back, the rain started.  It rained cats and dogs and rats and elephants for months and months and months.  Well now the deluge has ceased and, by happy co-incidence, the other-half has next week off work.  He has promised that I will have a garden by the end of next week.  So I’m using this blog to encourage* him.  I will post another picture at the end of next week so you can see if he’s kept his word.  Gardner’s block my arse!


*I say encourage, I mean, of course, threaten.


Challenge 2


My old chum Al is running a half-marathon in June and will be raising money for Breakthrough Breast Cancer, a charity which, among other things funds the development of new treatments.  If anyone has any spare bundles of cash lying around you can sponsor him here.

Actually I'm not telling the entire truth when I call Al an old chum.  He is, in fact, my ex-husband. Still, water under the bridge and all that.  Running a ridiculous distance for a breast cancer charity is a lovely thing to do.  Smiley face.  And of course I wouldn't dream of standing in the crowd waiting to trip him up.  Or would I?  Sinister laugh.  I only say this to encourage him*.  See, now I've planted the seeds of doubt in his mind the least you could do is sponsor him.  No pressure.  

*I say encourage, I mean, of course, threaten.