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.

... 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.

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.

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.