Friday, 27 February 2015

Going loco

The other day I went out to buy a water filter jug but came home with this instead


Not the world's best picture I'm afraid but who wouldn't want a tin 1950s toy train (plus signal!) on their bathroom skirting board?  The other-half is threatening to paint scenery on the wall behind the train, but I quite fancy the real 3D McCoy that I saw recently in an the window of an old style model shop in York


It would certainly make trips to the loo a bit more interesting.

So yes, I've been to York for a few days.  It has two of my most favourite things - history and shopping.  I had a great time, ate too much, slipped off the Lent no-booze waggon, spent too much money (new red boots and a picture!), went sight-seeing and walked my legs off.  

The glory that is York
I'm absolutely knackered now but it was worth it.  Did I mention new red boots and a picture?

Before we went to York I tried to kill sis no 1.  We went to see the snowdrops I talked about last timeIt was as lovely as usual although a bit on the chilly side


Then we headed off to a pub for Sunday lunch.  We decided to go via the Stiperstones (if you've the misfortune to live somewhere other than Shropshire and have no idea what the Stiperstones is, I'm talking about a big hill)As we drove up and up the weather got colder and colder and snowier and snowier


until we were almost in a white-out


Sis no 1, not a lover of all things wintry, was not impressed.  Anyway, we made it down the other side safe and sound, took refuge in the pub and stuffed ourselves full of grub before driving home, taking a less dramatic route.  I think sis no 1 has just about forgiven me.  Yhe other-half, on the other hand, enjoyed his Ice Road Truckers moment.

Have you notice I've been tinkering with the blog header again?  I'm not sure I like it but a change is as good as a rest.  And in that spirit I decided to experience some spring madness myself and go blonde



I'm not sure about this either as it's a bit too Bet Lynch for my liking



Picture from here
See what I mean

At my most recent hospital appointment I asked the oncologist what chemo options were left for me when the current regime (capecitabine and lapatinib) fails.  I was relieved that there are still two or three options to try but the reality is that nearly all of them would see me lose my hair again.  So I decided to have a bleach blitz while I had the chance.  So, no regrets there.  But no promises that the next post won't see me back as mousy brown and/or with another change in blog header.

While I'm on about all things cancery, my latest blog post for Vita (an online breast cancer charity magazine) can be read here, this month's not particularly happy subject is times when medical staff aren't all they could be, something most have us have experienced at times.  Big sigh.

Wednesday, 18 February 2015

A spring in my step


I'm just back from the oncologist's and am pleased to report that my cancer is stable.  In other words it isn't shrinking but it isn't growing either.  So I will continue on my current treatment, capecitabine and lapatinib, and then have another CT scan in late April to see what my insides are up to.  So, for now, I'm a happy bunny.

And spring time is just around the corner.  There are snowdrops and crocuses and the beginnings of daffodils here in Shropshire.  In fact, any local-to-Shropshie bods, if you'd like to see a kabillion snowdrops in one place and give to a worthy cause then come along to Winsley Hall this weekend (Sat 21st and Sun 22nd Feb) and stroll in the grounds for a fiver and see more snowdrops than you'll know what to do with.  The money goes to the Lingen Davies Cancer Fund.  More info on the snowdrop walk here and on the Lingen Davies Cancer fund here.

In other news I seem to have started a mini debate on Facebook about the correct way to eat a fish finger sandwich.  The correct answer is, of course, with tomato sauce.  I'm already aware, courtesy of the other-half, that some dimwits prefer brown sauce.  In addition to this heresy, it seems some benighted souls think that mayo or tartare sauce are the way to go.  I feel sorry for them all.  But not nearly as sorry as I am for the person who has never tried the gourmet delight that is a fish finger sandwich.  It really goes to show that the old cliche is true, there's always someone worse off than you are.

Tuesday, 10 February 2015

Cancerversary


Three years ago today I was diagnosed with secondary breast cancer.  I believe the average life expectancy for breast cancer patients with metastases to an organ (or organs) is two to three years. So I don't know whether to be delighted or depressed.  I think I'll go for the middle way and settle for my usual frame of mind - discombobulated.

We marked the occasion in the traditional way by going to an oncology appointment only to find that the results of my CT scan haven't been reported yet.  To be fair this doesn't happen all that often and, in this case, we were forewarned.  Anyway, I remain on tenterhooks until I go back next week sometime to hear the results and find out if the current treatment, capecitabine and lapatinib, is working or not.  But just to keep me on my toes I'm also having a (planned) mammogram tomorrow so then I can add worrying about my remaining breast to the mix.

Blimey I sound glum.  I'm not, honest.  In fact on the way home from the hospital we sang 'Happy Cancerversary to you' in both the traditional and Stevie Wonder versions.  I know how to have a good time!

Friday, 6 February 2015

A public service announcement


I have some important life lessons I'd like to share with you.  No need to thank me.

Do not be fooled by initial appearances.  Just because a certain three-legged monster cat, aka Cyril, went all kissy kissy for two seconds with a foster kitten, do not be deceived.  I had high hopes that this meant that he was happy to mix with other mogs.  I should've known better seeing as his hobby is fighting all the neighbourhood cats very loudly, very late at night.  Anyway after this promising first encounter Cyril went all growly and grumpy.  So, unfortunately,  there'll be no adopting of a bucket load of kittens at Discombobulated Towers and Cyril will continue to rule the roost.  Rest assured the kitten is now in his proper adoptive home and having the life of riley (away from stroppy three-legged monster cats).

Watch your mouth (or in this case the laughter than comes out of it).  Yesterday, feeling wiped out by chemo, I lay in bed half the morning dozing while the other-half braved the supermarket.  He returned some hours later barely able to stagger to the door.  Apparently he'd dropped his wallet at the checkout and when bending to pick it up his back gave out.  To mark the occassion he yelled "Oh fuck" at the top of his voice.  He then had to apologise to nearby shoppers.  When he told me this, I laughed.  Not a wise response given the amount of pain he was in.  I think I've just about been forgiven.  
  
Things never get any easier.  I had a CT scan a couple of days ago.  So I'm now in the scary limbo land  (probably a couple of weeks) of waiting to find out if this chemo is working.  If it isn't, I'm not sure what's next, or indeed how many more treatment options I've got.  So it's scanxiety time.  Yes again.  I won't go on and on about it as I've said it all before.

Anyway, right now I'm feeling fine, I've even had the hoover out today (much to Cyril's disgust, mind you he doesn't see it very often).  So head in the sand and onwards and upwards. 


Tuesday, 3 February 2015

All change

The look of this blog, never up to much, has been driving me bonkers lately.  Almost as bonkers as the incessant sodding itchiness I'm currently experiencing thanks, I think, to lapatinib.  

Seeing as the itchiness has had me awake since 3.30am I thought I'd occupy myself by tidying up the blog a bit.  Almost all the old links (to useful info, other blogs etc) are still available but you'll now need to use the tabs at the top of the page to access them.

If you hate the new layout keep it to yourself as I'm itchy and grumpy and won't be held responsible for my reaction to any complaints.
 

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.