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.

Monday, 6 October 2014

The filth and the fury

At the beginning of September I went off to Northumberland for a week long holiday.  Northumberland was gorgeous.  The scenery is fantastic and the weather was glorious.  I'm not sure if I came back with a tan though or if it was actually a layer of dirt, as the holiday cottage we stayed in was beyond filthy.  

Admittedly when I booked the place I could tell from the pictures that it had a certain 1980s look to it (curtains with swags and tails anyone?) but I had expected it to have been cleaned since then.  The yuckiness of the place was apparent as soon as we arrived and much argy bargy, discussions, foot stamping and even tears (tears from the owner not me) ensued.

Ah well.  I've been back for a month or so now and I don't seem to have come down with bubonic plague.  I won't bombard you with pictures of the grottiness of the place but this gives you an idea of the cobwebby horror of it all:

mmm lovely!
 Thankfully the rest of Northumberland was its splendid atmospheric self:





Although if I'm going to be 100% honest I wouldn't mind if I never went back to Alnwick gardens again - talk about bling!
All fur coat and no knickers, in my snooty-for-no-good-reason opinion
On the health front the results of a bone density scan revealed I've got osteoporosis.  This wasn't a huge surprise, but my intolerance to the bone strengthening drug I've been prescribed wasIt made me feel far yuckier than my current chemo.  So after three weeks persevering I've been prescribed something different.  I'm not brave enough to try it yet as it's a chemo week for me and I don't fancy a possible double whammy of vileness. 

After a lovely, lovely summer Autumn has arrived.  This isn't all bad news as I much prefer winter clothes and love being snug.  The love of snugness is probably the result of my mum repeatedly telling me to tuck my vest into my knickers so as not to get a cold on my kidneys. Anyway due to the passing of the years and the eating of many biscuits, this year I had to go up a size when buying woolly tights.  I may now be a medium horizontally but I remain a small vertically - which means when I pull the tights up they come up to my armpits.  Here's to a cosy winter!

Tuesday, 16 September 2014

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.

Monday, 15 September 2014

Ismena


First Fig
By Edna St Vincent Millay

My candle burns at both ends;
It will not last the night;
But ah, my foes and oh, my friends-
It gives a lovely light!


This morning the lovely and inspiring Ismena died of secondary breast cancer, aged just 40.

I never met her in person but knew her through a marvellous Facebook group, of which she was a mainstay.

You can read about her in her own words here.  I think this post in particular has something to say to all of us regardless of the state of our health.

Thank you Issy.

Thursday, 21 August 2014

Win-win

It's August again, which means ... Shrewsbury Flower Show.  I went along of course and got more photos of the children's veggie art entries to inflict on you.

August was also CT result time (which comes along every three months, although it feels like every three days to me).

I had double cause for celebration.  First of all there was no change to the cancer.  So I remain stable.  Hurrah for my chemo, TDM1 or Kadcyla (which I receive as part of a drug trial), and boo for it not being generally available in England and Wales (the jury is currently out in Scotland)

The second cause for celebration was that I seem to have a new oncologist.  I wasn't keen on my old (and now semi-retired) onc, Dr Oily, as I found him patronising and, to be honest, I haven't forgiven him for his attitude to his department's cock-up (in my view) in my care last year.  Anyway, the new bod introduced himself, didn't speak to me as if I was seven years old and was pretty upbeat.  Top marks so far.

Friday, 15 August 2014

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.