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.

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.

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 was.  It 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!

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.

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.

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.

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.

Me again

Just a short note to pester you with the fact that my latest burblings for Vita (an online magazine for the Breast Cancer Care charity) can be read here. 

Not the cheeriest of reads so here, have a free photo of Cyril, the three-legged monster cat, to be going on with:

Now, if you'll excuse me I've got things to do.  I want to finish this excellent book before this excellent film comes on in an hours time.  It's all go go go.

Ta dah!

And also wa-hey and any other self-congratulatory noises you can think of.  I have finished my pyjama bottoms.  No self-congratulations on the very poor photograph but I'm sure you get the idea.  Here's another crap photo just to make sure

The process was relatively painless (apart from standing on a pin with bare feet) so Coco Chanel had better watch out.  I'm not sure what will be next but keep your eyes peeled for more creations in the understated and elegant discombobulated style.

Not much in the way of health news.  I had a bone density scan recently but apparently it takes about nine light years for the results to come through.  However it's CT scan time again soon so stand by for the usual tetchy nervousness as I await the results.

In the meantime I've been enjoying the weather and earlier this week went on a jaunt to Leominster with Sisses 1 and 2 and Mr Sis 2 (otherwise known as The Sainted One, for putting up with Sis 2 for umpteen years).  We trawled the antique/secondhand shops and I indulged in my addiction for books, pictures and embroided bits and bobs.  If I acqure any more junk the house will burst.

Yesterday I went for an evening drive across the Long Mynd with the other-half.  The heather was out and all was lovely.  We admired the views

and watched the sunset

athen, predictably enough, we headed for the pub.  Night night.

Monkey business

Three years and one day ago the other-half and I got married.  

aah look, love's middle-aged dream

Yesterday to celebrate, and for reasons to complicated to go into, we went to the pictures to see Planet of the Apes.  I looked up 'third anniversary' and there seems to be some debate as to whether it's leather (oh I say!) or glass.  I think both are wrong  Given yesterday's cinema trip the third anniversary is obviously monkeys.  Incidentally if anyone is feeling the heat in the current lovely weather, may I suggest a trip to the cinema, the air conditioning was so intense yesterday I nearly got hypothermia.

Anyway, as yesterday was my wedding anniversary, today is the three year anniversary of my husband telling me he now had nothing to look forward to (as he'd enjoyed the wedding day even more than me, and that's saying something).  Romance eh?

For even more whinging my latest blog for the online breast cancer magazine, Vita, is now available here.  Have fun!

Fancy pants

Hold on to your hats.  I have bought a sewing machine!  As if my adventures in knitting weren’t exciting enough I have decided to diversify. 

I’m starting out with something simple; pyjama bottoms - no button holes, no zips and, hopefully, no frayed temper.  Behold the material I’ve bought.   

Sunglasses on

My plan is that I’ll be able to read in bed solely by the light of my incredibly bright night attire – no lights needed. 

You may think this latest step into the world of make do and mend is foolish on my part, seeing as I haven’t really progressed beyond scarves in the knitting department.  However, I am inspired.  Of late I’ve been perusing (and enjoying) the sort of arty-crafty blogs where the writers skip around their beautiful gardens with a paint brush in one hand, embroidery threads in the other while home-schooling floral pinafore clad daughters with names like Marigold, Petunia and Cystitis (I may have made that last one up). 

While I can hardly compete with those blogs in the angelic offspring stakes I can offer a rosy-tinted shot of Cyril, the three-legged monster cat, in my beautiful garden

Butter wouldn't melt

You'd never know from this photo that Cyril has been to the vet for an infection picked up while fighting again.  He's right as rain now though (after a course of anti-biotics which were next to impossible to get him to swallow).

Anyway, my beautiful garden.  Look how things have come on in the horticultural department:

June 2013

March 2014 (complete with pensive other-half)

April 2014

June 2014

July 2014

Please be especially impressed by the 'memory path' which is filled with odds and ends from beach-combing and the like.

I know all this is shameless bragging but really it's nothing to do with me, it's all the work of the other-half.  Sometimes he has his uses.  

It was a shame then, that on the evening we decided to invite the other-half's family, Clan Wiggins, over it rained buckets.  However, we weren't going to let a little thing like rain put us off and so the other-half erected a make-shift tarpaulin-covered seating area - so the family were forced to sit outside and admire his handiwork.  

The other-half comes from a huge family.  This can make entertaining difficult as my idea of cooking is putting together a cheese and pickle sandwich and I can get even that wrong.  Never, on the night Clan Wiggins came over, have so many boxes of supermarket pre-cooked snacks been opened.  Truly I am the hostess with the mostest.  Some of the family stayed over and although I had stocked up with the ingredients for a cooked breakfast I didn't have to raise a finger as the other-half's sisters rode to the rescue.  Hurrah for the breakfast pixies and many, many thanks.  Without them I'd have been sobbing under the kitchen table having a panic attack.

Lest you think all my adventures have been home-based, I've been out and about.  I've been back to Ludlow and bought yet another hand-bound notebook and gone over the border into Wales to see the the UK's tallest single drop waterfall, Pistyll Rhaeadr. 

see bloke in red on bottom right for an idea of scale

It was magical, as was the surrounding countryside

 

If goblins don't live under this tree then my name's not Rumplestiltskin

 We stopped for a cuppa at a nearby (and very lovely) cafe and shared a cake with one of the locals

 We then went on to Lake Vyrnwy and had lunch in a very unlovely cafe.  We should've guessed what it was going to be like given the signs on the path

Once inside there were more signs forbidding you to move any of the tables.  I was too scared to take photos of these as, surprisingly enough, the owners were not very friendly.  We sat outside in a rather rancid marquee type veranda.  I'm really glad the sun was shining as inside the cafe building they appeared to be playing things like this on a continual, hellish loop.  However, even this horror couldn't spoil the gloriousness of the day and the view.

Ignore the power lines, you picky sods

I'm not sure if it was all the gadding about, the side effects of the chemo (still mercifully few) or good old cancer related fatigue but I did end up pretty tired for a good few days.  I was forced to rest up at home and eat food that even I could cook

Many thanks for the spiffy new egg cup J!

But I suspect my tiredness was as nothing compared to that of my ex-husband who ran the Shrewsbury half-marathon in blistering heat for Breakthrough Breast Cancer (a charity I've got a lot of time for), so hats off to him.  Also hats off to Frances, who took part in a recent Race for Life bearing my name on her competitor's bid.  Thanks Frances

That's all the news from Discombobulated Towers for the time being. I'm off to do battle with my new sewing machine in the hope that next time I'll be able to post a photo of my luminous new PJ bottoms.  You lucky devils you!

 

Gadding again

I’ve been gadding about all over the countryside again.  That’s my excuse for not posting recently. 

Apologies for anyone left in the lurch about my latest CT scan results (although I did plaster it all over Facebook).  I've seen the oncologist and there was no change in the cancer, in other words I'm classed as stable (for now) and I can carry on with my current treatment.  This made me very happy.  I would have been even happier if the cancer had shrunk but that’s just me being greedy.

I recently posted a blog entry for Vita, Breast Cancer Care’s on-line magazine, you can read it here.  However, it’s mostly just me whinging on about waiting for scan results which, if you’ve read this blog for any length of time, you will have already endured several times.  So, here’s a get-out-of-jail-free card, you are excused reading the Vita blog.  I’m good to you, I really am.

Anyway, since getting my latest test results I’ve been here, there and everywhere. Well, Birmingham, Yorkshire and Cornwall to be precise.

I went to Birmingham to meet up for lunch with several other women with secondary breast cancer.  It was great to put faces to names (we knew each other from an on-line group) and chat about this, that and the other – and not solely cancer.  While I wouldn’t wish this sodding disease on anyone it’s a blessed relief to talk to other people who know exactly what this whole stage IV cancer malarkey is like.

After that I went up to Yorkshire and what a lovely county it is.

Aysgarth Falls (bloomin' lovely)

First of all we went to the north bit of Yorkshire for a very happy, joyous wedding.  I can safely say this was the only wedding ceremony I've attended where the vicar (a Benny Hill look-a-like) threatened to kill the bride for laughing.  Then on to the west of the county to see my aunty and cousins.  It was a fantastic visit and I hope to go back  again soon to inflict myself on my long-suffering relatives some more.

Then there was just time to squeeze in some hospital appointments (physio and chemo) before dashing off again, this time to Cornwall, where the sun shone and I did lots of Cornwally things which included visiting lovely villages like this one,

I think this was Ruan Minor or maybe Cadgwith

buying a picture at St Ives, eating a pasty, drinking cider and, oh bliss, a cream soda float,

Food of the Gods

getting serious, serious house envy

want one, want one, want one!

and making childish jokes about gardens.

The photo above was taken in the stunning gardens at Trebah.  There's a number of huge plants called gunnera there.  You could walk though a tunnel of them.  This walkway was named 'gunnera passage' which really does sound like some kind of embarrassing disease that you'd put off going to the doctor about until the itching really was unbearable.

I was in Cornwall with the other-half, two of his sisters and their husbands.  I'm afraid they led me astray and drink was taken.  I had a brilliant time, the sort even having just one toilet between six adults can't spoil (Bear Grylls has got nothing on me).  I'm not sure whether the highlight of the stay was the other-half slumping over the stable door to our cottage in an effort to make passers-by think he was dead or the time when he, half-cut, decided to drop his trousers to show off his knees - which were stained a patchy rust-brown by his cack-handed and ill-advised use of my self-tan lotion.  Happy days.

Anyway, I'm now back home surrounded by sisters (all three of them are in Shropshire at the mo) and enjoying the sunshine.  Don't worry I'm sure I'll revert to my normal moaning for the next post.  Later taters.

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.