Monday, 19 January 2015

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:
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.










  






Wednesday, 7 January 2015

Plodding on

I started a new (to me) treatment last month (after the cancer in my lungs had started growing again and also spread into my liver).  As with any medicine this chemo, capecitabine, and biological therapy, lapatinib, come with a huge list of possible side-effects.  And it seems that I am working my sorry way through the whole sodding list.  So far some of the highlights have been itchiness, acne, heartburn, queasiness, diarrhoea and fatigue.  

Thankfully, for the most part, the side-effects have cropped up one or two at a time rather than all at once.  For the past couple of weeks it's been the fatigue that's been the real downer.  I've spent a lot of time lossicking about in bed or on the sofa and have missed out on some planned outings or had to come home early.  So I'm feeling a bit hard done by and sulky.  Fortunately I have a book backlog to get through so being (sort of) housebound has had some compensations.  I have a scan next month so then I'll find out if the treatment is working or not.  If it isn't working and I've been feeling grotty for nothing I will be unbearable, be warned!

Anyway all this sitting about at home being grumpy isn't interesting for anyone. Fortunately Cyril, the three-legged monster cat, is keeping me entertained.  His recent exploits include spending hours who-knows-where and coming home covered in mud,


and when the weather prevents even this intrepid explorer from going outside finding puddles, he polishes his hunting skills.  Here is he chasing elk.


He also fell asleep on a hapless and rather large spider.  When he woke up he was walking around with the horrible (and very dead) eight-legged monstrosity squished on his face.  Fatigue or no I found I was able to run away from him in quite a sprightly fashion.  No pictures, I was too busy standing on a chair screaming, the most exercise I'd had in ages.


Wednesday, 24 December 2014

Itchy Xmas

A whinge to start off with, then I'll put my festive trousers on.

I'm two weeks into my new chemo combo (capecitabine and lapatinib).  I have been fortunate enough not to have had, as yet, any of the yuckier possible side effects (sickness, explosive visits to the loo etc) but I am pretty tired a lot of the time, am incredibly itchy all over and my nose and chin are covered in acne.  I am not impressed.  I've now got ointment, antibiotics and antihistamines so hopefully the skin rebellion will calm down soon.  Weirdly it's the acne that I hate most.  Thinking back, I hated going bald (on a previous chemo) and I hated losing a breast (the mastectomy) but I hate, hate, HATE having a face full of spots.  I suppose my attitude to a relatively minor side effect means I'm either completely barking or a deep and complex person.  Big prizes for the correct answer.

Miserable sods, like myself, who'd like more moaning can see my latest blog for an online breast cancer magazine by clicking hereFor happier souls let's move on to festive frolics.

Something very strange has happened at Discombobulated Towers.  Rather alarmingly the other-half seems to have turned into Kirstie Allsop.

First we had the homemade Christmas wreath

The other half looking uncharacteristically bashful
and here it is in pride of place


So far so good.  But then things started getting a bit bizarre.  He made me a Christmas card.  Aw, touching, I hear you cry.  Hold your horses!  First a little background ... A few weeks ago the other half and I were oohing and ahhing over a cute mouse who was helping itself to food from the bird table and then scurrying back to the safety of it's home (we guessed) under the garden shed.  He saw it a few times after that and commented on what a large, well fed mouse it appeared to be.  Gradually the realisation dawned that the cute little mouse was in fact a big, scary rat.  I say scary because even Cyril (the three-legged monster cat) ran away from it.  Anyway, the other morning I came down to find this Christmas card waiting for me


The other-half, age 49 and a half, had stayed up to two in the morning making this thing of wonder.  It says Happy Ratamas, is partially made out of an old sock and has an illuminated nose.  It also has a lovely stand (not shown) made out of the middle of loo roll.  Truly I am blessed.

I returned the favour and made him a card too.  However, I'm not showing mine because a) it's nowhere near as good as the other half's and b) it features a misplaced apostrophe (oh the shame!)

All of which brings us on to the piece de resistance.  Last Saturday saw the other-half's family Christmas party.  The brief was to wear something Christmassy, cue lots of festive jumpers etc.  The other-half decided to do something different.  He spent a whole afternoon constructing a hat made out of brussel sprouts, fairy lights and a light-up tree.  It involved a great deal of swearing, a lot of electrical tape and made the whole house reek of festering veg.  The completed article, as well as being something to behold, also weighed about two tons.  The other-half's neck is now two inches shorter.  Anyway without further to do, here it is, and a Happy Christmas to all!



Monday, 1 December 2014

Bad ideas

If anyone is looking for some bad ideas I have a few you could use:

1.  Lose the ability to tell the time

I woke up this morning, got out of bed, turned the heating on, made my morning cuppa and fed the cat.  Then I double-checked the time.  It was 3.30am.  

2.  Try to compete with the cat for warmth

Strangely enough, this afternoon I felt rather tired (I wonder why).  I decided to have a snooze in front of the electric fire.  Stupidly I failed to take into account what Cyril (three-legged monster cat) would make of the situation.

Della 0 - Cyril 1

3.  Give poorly liver a good bashing

So, what do you think would be a good thing to do on finding out that not only has the cancer in my lungs grown but has now also made an appearance in my liver?  Maybe double check my will, meditate like mad or increase my vile green juice intake?  Nah.  Instead I gave my liver a (very enjoyable) evening out and a thorough hammering with an exciting lager/wine combo.

4.  Behave like a 17 year old (with apologies to all sensible 17 year olds out there)

So what next after mixing several gallons of the grape and the grain?  Some damage limitation maybe, like straight to bed with a pint of water?  Nah.  Let's live dangerously, get the felt pens out, and draw on the face of my hapless friend who'd fallen asleep on the sofa.  Thankfully, the following morning, the pen washed off.  Otherwise I would not be around to type this today.

5.  Indulge in public nudity

As you can imagine I attend a lot of medical appointments.  Dignity is a thing of the past and I now peel off my clothes at the drop of a hat.  However, it really wasn't a very good idea to walk into a reflexology appointment on automatic pilot.  I was half-way through taking my top off when I caught sight of the poor reflexology lady's face and remembered that this was most definitely not a stripping off sort of appointment.

6.  Expect any form of co-operation from our feline overlords

This weekend I accompanied friends to the heaven-on-earth that is Shropshire Cat Rescue, where they were choosing which cat to adopt.  All of this is of course, a very good idea.  However I, rather optimistically, decided to take a photo of Pickle the soon-to-be-adopted cat.  My photographic endeavours were scuppered by Pickle's ginger and white cage-mate, Ed. 

I believe the young people call this photo bombing

7.  Experiment in interior design

I've included this one to make myself feel better, as this isn't my bad idea.


A loo roll cover seen in a cafe toilet in Alnwick.  The owner assured me that she'd won it in a darts competition and had not made it herself.


So, there you have it, a selection of bad ideas you might want to try yourself.  No need to thank me.  

I start my new chemo, capecitabine and lapatinib, next week.  Here's hoping that my cancer thinks this is a very bad idea and receives a good kicking from the combo.  Fingers crossed.

And finally, it's December now, which means I am officially allowed to mention Christmas.  So here, have a courgette penguin, as seen at the flower show in the summer. (Oh, OK a zucchini penguin then, if you don't speak English proper like what I do.)




Don't scoff, it's heaps better than the mawkish nonsense produced by John Lewis.  And if you don't agree with me see Charlie Brooker's view on Christmas adverts, a man after my own heart.  Happy Christmas!

Sunday, 16 November 2014

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 worldThis 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

Wednesday, 22 October 2014

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):


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.

Friday, 10 October 2014

Spiky



Here's my latest blog post for Vita (an online breast cancer charity magazine).  It's about how pissed off Breast Cancer Awareness Month can make me, and others with secondary breast cancer, feel.  Stand by for whinging.