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
  • 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


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.