A shit sandwich and seeing the sights

First of all let's deal with the shit sandwich, and thanks to Sarah for that expression, I'd never heard it before and am now using it at every opportunity.

My latest scan results show that my current chemo, the lovely TDM1, has stopped working for me.  I had a good run on it, nearly 18 months but now the cancer has outwitted it and is on the move again.  The crap in my lungs has grown and it also seems to have spread into my liver.  I saw the oncologist last week who gave me this news.  He wants to go over my scan again with his doctor chums (why he couldn't do this before my appointment last week I don't know but hey ho).  I go back to see him this week for his decision on what to do next but the most likely option seems to be a change in chemo.  So grim news, but there will be other treatments to try and, at the moment, I feel OK so for now just sticking my head in the sand and fingers in my ears while singing la la la.

More news of the shite variety this time regarding treamtments for advanced cancer.  If you've read my rants for any time you'll know all about certain cancer treatments not being made available to National Health Service (NHS) patients purely due to cost. However, people in England have been able to access these treatments if their NHS oncologists applied for funding through the Cancer Drug Fund (CDF).  Now the NHS have decided to look at excluding 42 cancer drugs from even the CDF due to cost.  Of course several treatments for advanced breast cancer are on the list.  Read more about it here.  This is dreadful news.  It makes me depressed, scared and very, very angry.  It feels like the NHS are saying 'oh just fuck off and die' to people with advanced cancer.  I shan't say anymore here other than if you feel like signing a petition about it then there's one on the go here.  Just like most people I have my doubts about the effectiveness of petitions but it's worth a try so if you've got a spare five minutes please do sign.

OK, on to happier stuff.  We had a refund from the holiday company after our stay in the dirtiest holiday cottage in the world.  This refund coincided with a 30% off everything sale at Laura Ashley.  What can I tell you?  I was weak.

Also I've been gadding about again.  

We've been to see friends in Monmouth and visited the spectacular Chepstow castle (the town of Chepstow itself is a bit run down but if you close your eyes and head for the castle it's great). 

We went to London to see the poppies at the Tower of London (one for every British soldier killed in WW1), just as spectacular and moving as everyone says

 

And we spent a weekend in Somerset in the gorgeous town of Wells.  Everyone should rush there at once, it's beautiful, look:

To add to all the delightfulness, the town was cat central.  The stunning cathedral has it's own resident cat Louis who we met but failed to photograph.  Never mind, I nicked a lovely picture of him from off the internet:

Picture from here

 The Bishop's Palace also has a resident cat, Maisie, and here she is showing me around:

Win big prizes by admiring my lovely new coat!

And to cap it all the B & B we stayed in, which was utterly lovely, despite it's unpromising name of Beryl had two cats, twenty-two year old Clementine and the much younger Willow, pictured below, who was very cuddly indeed:

So to sum up, despite crap news on the health front, I'm still having a great time.  I shall end with a picture of some brilliant artwork made and sent to me by a friend who also has advanced cancer but still thought of me when she heard about my latest scan.  Aren't people lovely, not to mention talented!

I'm a lucky ducky

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.

An opportunity for Scotland

My latest blog post for Vita (the online magazine for Breast Cancer Care) is available here.  Be there or be square.

Nasty NICE

Last Friday the National Institute for Health Care and Excellence (NICE) confirmed their decision not to approve National Health Service use of TDM1 (trade name Kadcyla), the chemo I've been having for over a year courtesy of a drug trial.  The decision is purely down to cost.  It pissed me, and a lot of other people, off.  I didn't bother whinging about it here because you've heard it all before.

Today NICE continued in the same vein (pun intended) and turned down a drug for advanced prostate cancer.  That thudding you can hear is the sound of people throughout the country banging their heads against walls.

A writer at The Telegraph sums it better than I ever could, so I'll stop going on about it here but if you do want to read more and get an idea of how disappointed and angry many people are then please read this.(By the way, if you do read it, maybe stay clear of the comments section as there are some right-wing nut jobs on the lose.  Apart from my mate Tim that is, who valiantly took them on!)

I've been having a whale of a time lately with friends and family visiting, meals galore and the annual trip to the Shrewsbury Flower Show.  It's just that all the craptasticness from NICE and my impending CT results (next Wednesday)have left me feeling a bit like this Flower Show exhibit:

Ah well, tomorrow is another day.

... 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.

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).