Peace, love and understanding

I am tired.  Really tired.  And it's not just my current chemo that's the cause.  Frankly I'm utterly weary of the whole argy-bargy which seems to surround the treatment of incurable cancer in England at the moment.

I warn you now this is going to be a long rambling post, so you might want to resort to alcohol, go and clean the fridge out, or maybe worm the dog instead of reading any further.  However, if you stick with me I'll reward you with more photos from the kids' veg art category of the local flower show.  Like this one.

Nobody knows how to bribe like me!

Anyway, back to the argy-bargy.

If you've been foolhardy enough to have been reading this blog for any length of time you'll know that I've been somewhat vexed of late over the Cancer Drugs Fund (CDF), which enables National Health Service (NHS) patients in England to get drugs which wouldn't be available to them otherwise. Recently the CDF rules were changed which meant that, for the first time, the cost of treatments was taken into account.  This has led to some drugs being removed from the CDF list, making them unavailable (from March 2015) to patients in England unless they have access to private medical care.

The long and anxious wait for the official announcement about which drugs are to be removed came to an end earlier this month.  I wrote about it in my latest post for Vita (an online breast cancer charity magazine).  In brief, twenty-five cancer treatments will no longer be funded by the NHS. Three of those drugs – everolimus (Afinitor), eribulin (Halaven) and lapatinib (Tyverb) – are used in the treatment of advanced breast cancer.  You can read the reactions to this from two breast cancer charities here and here.

Initially I was almost relieved at this news.  After all, there had been a lot of press speculation that three other drugs used in the treatment of advanced breast cancer, T-DM1 (Kadcyla), pertuzumab (Perjeta) and bevacizumab (Avastin), would also be removed from the CDF. This has turned out not to be the case, so those treatments remain available to NHS patients.

However, my relief was short lived.  Firstly, the NHS has warned that further cuts to cancer treatments are likely, so we are by no means out of the woods yet.  Secondly, I find it disturbing that of the twenty-five treatments removed from the CDF, sixteen are life-extending. I think this is part of a wider tendency to make ill-founded and ruthless judgements about the value of the lives of people with incurable cancer.

OK, by now you are probably coming to the realisation that this particular post isn't going to be a laugh a minute.  But look, you've got this far.  Here, have a veggie picture.

Now brace yourself and read on.  Please. 

So, back to making judgements about people with incurable cancer.  Obviously this is something I'm incredibly sensitive about.  But it really does seem to me that there is a very unpleasant tone to some of the coverage about changes to the CDF and cancer patients in general.

Some examples?  

Well, there was, of course, the vile and sanctimonious article in which Jenni Murray expressed the opinion that expensive drugs for treating advanced stage breast cancer should not be funded through the NHS.  Her piece included such choice phrases as  "led by sentimentality", "seduced into outrage by poignant stories of young mothers who can't be saved" and "if I were told tomorrow that my cancer was terminal ... [I wouldn't expect] false hope from expensive wonder treatments, but do what I could for others".  Lest I be accused of taking Ms Murray's words out of context you can read her full article here.  

More recently a doctor (and former editor of the British Medical Journal) expressed the opinion that cancer was the "best death" and we shouldn't "waste billions trying to cure it".  The whole article can be read here.  There has been much outraged comment on this piece so I won't add to it.  However, if you want to read a rebuttal, I think one of the best responses was made by Heather Lawrence in the Huffington Post. 

Then there was the controversial advert highlighting pancreatic cancer.  In which patients express the wish they had other forms of cancer.  I can see where they are coming from, but many breast cancer patients, especially those with advanced breast cancer, found this divisive and insulting.

Ugh.  Time for a moment's light relief.

Now back to the fray.

Just recently I read a bulletin from the National Health Party (a political party formed to defend and improve the NHS and an organisation I've got a lot of time for).  They would like to scrap the CDF entirely (a view I'm actually coming round to but I'll get on to that in a bit).  Am I perhaps being over-sensitive in finding some of the language in the bulletin unhelpful?  The whole piece can be read here, but it's the tone of this part in particular that I find difficult: "cancer patients are prioritised above all other patients, undermining the fundamental NHS principle that all patients should be treated equitably. Hundreds of millions of pounds of NHS funds are being diverted to treatments of limited or questionable benefit, when there may be much greater overall benefits to other patient groups".  It's the potential for this to be seen as pitting cancer patients against patients with other distressing conditions that I find troublesome.

Much to my surprise I've come to the conclusion that the existence of the CDF is unfair.  I know, I know it sounds like a case of turkeys voting for Christmas but bear with me.  A friend of a friend pointed out, quite rightly, that the setting up of the CDF was a cynical ploy by the current government and not a genuine attempt to find a sustainable way of funding cancer treatment long term.  While I have my doubts about the language used in the National Health Party Bulletin I do concede that treating one group of patients differently to another is wrong.  The New Scientist also points out the CDF's shortcomings, including it's ultimate benefit to drug companies and their share-holders. 

Some say, and I'm inclined to believe them, that the current position the NHS is taking with the CDF is an attempt to get drug companies to reduce their prices.  I can see why too!  Of course, while the bargaining goes on people are denied treatments which could extend their lives.  I really don't have an answer for this.  It seems cancer patients truly are stuck between a rock and a hard place. 

I should confess here to being a massive hypocrite when I say the CDF is unfair. I benefit from the fund myself, as it pays for my use of lapatinib.  And in no way am I so holy that I'm about to insist they stop funding me immediately and give the money to someone more needy.  Not a chance!  Selfishly, I absolutely don't want to see the end of the CDF until the funding of cancer treatment reaches a happier conclusion.

However, I won't let my own personal hypocrisy prevent me for further pontification (sorry, there's no escape).

What really troubles me is divisiveness and value judgements about the worth of people's lives.  I don't want to see division between people with different sorts of cancers nor a vying for precedence between people with different sorts of health problems. And I sometimes feel that this unsavoury competition is exactly the approach we are being encouraged to take.  The famous Bevan quotation, "illness is neither an indulgence for which people have to pay, nor an offence for which they should be penalised, but a misfortune, the cost of which should be shared by the community" is inclusive, it doesn't refer only to some illnesses or some people.

Brain hurting?  Yeah, me too.  Have a aubergine penguin or three.  Oh OK, an eggplant penguin if you insist (see how inclusive I am).

Of course, the NHS does not have a bottomless purse.  So, the argument goes, decisions, even really hard ones, have to be made.  However, in going along with the setting up of one group of patients against another, I think we are barking up the wrong tree.  The NHS, as a whole, needs more funding.  I think (and yes I am a dyed in the wool lefty) that we need to question what the state chooses to spend our money on. Here's a few saving suggestions:

• Twenty billion pounds on updating nuclear weapons.  Really?  
• Forty two billion pounds on a high-speed rail link (we do have phones you know) 
• Sixty to eighty billion likely to be lost on bank bail outs.  Don't start me off.

So there you have it.  Much wordiness from me when really I could have my expressed my frame of mind much more entertainingly by simply linking to this and this.

And for anyone about to lambast me for foolishness and woolly thinking, I leave the last word to the inestimable Wendy Cope:

Differences of Opinion - He Tells Her

He tells her that the earth is flat -

He knows the facts, and that is that.

In altercations fierce and long

She tries her best to prove him wrong.

But he has learned to argue well.

He calls her arguments unsound

And often asks her not to yell.

She cannot win.  He stands his ground.

The planet goes on being round.

Congratulations on making it to the end of this epic post.  Let the hula dancing commence.

  

Doom, gloom and killer cattle

Picture from here

I warn you now, I am in a bad mood.  I was awoken at 3.45am by the claws of Cyril (the three-legged monster cat) who decided he'd quite like his breakfast served early this morning.  I have not been able to get back to sleep since, which is more than I can say for the bloody cat, who is now snoring at the foot of the bed with a full tummy.  Yes, I know I have created a rod for my own back.

While lying here wide awake I've been mulling.  Never a good idea.  Here are some edited highlights of my disgruntlment (and if that isn't a word it should be):

• The National Institute for Health and Care Excellence (NICE) deciding not to approve access to TDM1 (Kadcyla) via the National Health Service (NHS) in England and Wales, and the price the drug company is charging for this treatment.  TDM1 is the chemo that has worked well for me for nearly a year and a half (luckily for me I managed to get treatment via a drug trial). 
• Jenni Bloody Murray's pontification on TDM1.  Yes, I am still angry about that.  I know I should let it go for my own sanity, but Ms Muray setting herself up as someone who knows the score because she has had primary breast cancer is much like me saying that because I have a cat I'm the world's expert on parenting.  No insult intended to people with primary breast cancer - it's vile, scary and altogether horrible but not in the same league as being told the cancer has spread and will definitley kill you (the joy that is secondary breast cancer).
• The mealy mouthed response I got from a charity, Breast Cancer Campaign, in response to my query as to why, given her views, Jenni Murray was still listed as one of their celebrity supporters.
• People in Scotland being denied access to TDM1.
• The Haven, who I found so helpful a while back, issuing an annual newsletter which didn't mention secondary breast cancer a single, solitary time, and the Haven's mealy mouthed response when I pointed this out.  This is yet another example of the endless sidelining of people with secondary breast cancer.

And now I've got a new message of doom.  Although people with cancer in England and Wales have been denied TDMI (and other treatments) through the NHS, we have been able to access these treaments through the Cancer Drug Fund (CDF).  Or at least we can at the moment.  The NHS has decided to open a consultation on changes to the CDF which means it will take the cost of treatment into account in the future (something it hasn't done before).  Call my cynical but aren't consultations by government bodies usually just an exercise in asking people what they think and then going ahead and doing what they planned anyway?  If my worst fears are realised many life prolonging drugs will no longer be available to those unable to pay for them privately.  The consultation ends at the end of this month and I urge you to have a look and complete the survey if you can bear to.

So there you have it.  The cat woke me early and I've been lying here fuming and decided to share it all with you, you lucky, lucky bunnies.

I then went on to consider that, had I not had the good fortune to be born in a country with good health care, I'd no doubt be dead and buried by now.  Which in turn led on to thinking about the dreadful hardship endured by so many people in the world, like 748 million people not having access to safe drinking water and the state of the world itself with all the horrors of war, pestillence and climate change.

It's enough to want to make me stay in bed for the rest of the day with a bottle of sherry and a family pack of custard tarts.  All in all that cat has got a lot to answer for.

I can't even blame my mood on the onset of winter.  I like winter.  I like snuggly winter clothes, sitting by the log burner and my latest knitting project, an incredibly (and unintenionally) wonky scarf.  OK, by February I've usually had enough of cold, driving rain and dark nights but up till then I embrace the gloom.  By the way here's some top notch and enjoyable research on seasonal affective disorder from the Daily Mash. 

Having moaned for several million paragraphs I should point out that, on a personal level, I'm having quite a jolly time.  Maybe, in the spirit of fairness I should list the good stuff too:

• I am now on a different bone strengthening medication.  This one seems to have no side effects (unlike the last one which was yucky), so hurrah for that.  
• I've had the full compliment of sisters (nos 1, 2 AND 3) in the UK recently.  Which was lovely.  Sort of.
• Started a brilliant mindfulness course (mock me at your peril).
• Some good friends have recently raised over 1000 pounds for the excellent Breakthrough Breast Cancer.  They did this by forgoing anniversary presents and, shudder, running a half-marathon.  Many, many thanks to them.  My cockles are warmed.
• I've been out and about enjoying the autumnal sunshine.

The being out and about included walking up a sodding big hill.  The intention was to walk around the bottom of the hill rather than climb it, but the lower footpath was blocked by scary hairy cows (see picture at start of this post) so I took the high road.  Once I reached the top (and stopped sobbing) the views were fantastic.

A

And finally, here's a picture of me ascending the steep slope.  I'd like to tell you I was being brave but actually at this stage I was too out of breath to cry.

  Onwards and upwards.

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.