I bloody knew it!

Picture from here

I got my latest scan results yesterday and, as I suspected, the little fuckers in my lungs are up to no good.  I suppose I had clutched a very faint hope to my moth-eaten and mutilated bosom that the endless bouts of coughing and attacks of breathlessness might be a side-effect from my current hormonal treatment, but nah of course not.  The grim reality is that the cancer in my lungs is growing.  

While the scan results were pretty predictable, the oncologist's suggested course of action came as a bit of a surprise.  I'm being referred to the Christie (a specialist hospital in Manchester) to see if they know of any clinical trials that might be helpful or even perhaps look at my suitability for immunotherapy.  I'm pleased about this, as it'll be good to be checked over by the experts, if only for my own peace of mind.  If the Christie can't help then I'll be going back to my local hospital to try another chemo, vinorelbine.  And that, I think, might really be my last chemo option. 

The news has affected me in a strange way.  Rather than taking to booze (any more than usual I mean), surrounding myself with doughnuts or lying sobbing in bed, I have an overwhelming desire to chuck out all my clothes and buy new ones.  This can only prove that I really am the most incredibly shallow person ever (yet more unsurprising news).   I'm not even sure what sort of clothes I want - just not the ones I've currently got.  How about I go for my 1983 look:

Robert Smith in a skirt

Yes, I am wearing leg warmers over woolly tights.  And yes, that was cool.

Anyway once I get a) a new wardrobe or b) an appointment at the Christie I'll be sure to give you all the news.  How you'll stand the excitement I just don't know.

Until then, simply because I haven't mentioned him for a while, I'll leave you with a picture of my beloved.

Cyril, the three-legged monster cat

 

Dangerous Del

Today I have been wildly reckless.  I have changed the quilt on my bed from winter to summer mode.  So now I'll be snoozing under 9 togs instead of the usual 15.  I know, CRAZY (given the erratic summer we're having here in England), but that's the way I roll.

I've been doing quite a lot of snoozing lately, either in bed or on the sofa.  I think it's due to the current chemo but as side effects go it could be so much worse, so I will cease my whinging here.

Before I move on from the subject of cancer I just thought I'd mention that Breakthrough Breast Cancer (one of the charities we will be raising funds for at the forthcoming barn dance) has merged with Breast Cancer Campaign to form Breast Cancer Now, the largest breast cancer charity in the UK.  The new website is still nauseatingly pink (don't start me on the whole pink thing) but other than that I'm impressed.  They seem to be taking metastatic breast cancer seriously and their new TV advert is, I think, spot on.  You can view it here.

I'm still obsessed by my tiny but, I think, lovely garden.  Here's the latest - front and back

This is what happens if you scatter poppy seeds with wild abandon (I will be starting an opium farm shortly)

Not content with sitting in my own garden I recently went on a tour of neighbourhood plots as part of the open gardens scheme.  It was a lovely sunny afternoon and at one point we were sat in someone's garden listening to a string quartet while drinking tea and scoffing cake.  It doesn't get much better than that.

Here are some edited highlights (and yes, I was very, very, jealous)

Herbaceous borders to kill for

Someone else with a poppy fetish

Swoon fest

 

shed envy

and scarecrows with attitude

And lest you think I have gone completely peculiar over plants, don't worry my number one concern remains mog-based.  I leave you with pictures of the cats I came across during my garden tour (all in all a blissful afternoon).

A Cyril look-a-like (apart from the full set of back legs)

Hello handsome

This one, Celeste, was in disgrace for bird murder (in full view of guests)

 

 

 

Oh yes, he knew he was beautiful

Yee-haw

Anyone want to help raise money for Breakthrough Breast Cancer and Compton Hospice?  Anyone want to have a good laugh?  Anyone at a loose end on the evening of Saturday 27^th June 2015? 

Then mosey on down to Codsall Village Hall (Staffordshire) for a hoe-down (that’s a barn dance, not an evening of weeding you knuckle heads).  

The event starts at 8pm and tickets are £10 each (under 14s free).  All profits will go to the charities mentioned above.  You’ll need to bring your own drink and nibbles but there will be cake (food of the gods) and music by the amazing Slippery Hill Boys.  

We’ve also got some rattling good raffle prizes including

• 2 adult first class day train tickets
• A photo shoot with CD of 40 pictures
• M & S vouchers (two lots worth fifty quid each)
• A family swim session
• Bottles of bubbly

If you’re interested contact me or Nev for tickets.  If you don’t have my contact details just leave a comment and I’ll get back to you.

I’d also like to say a big thank you to a couple of the other-half’s nephews who have been working their socks off to make this event a success.  On the evening I’ll try to lay off the booze otherwise I’ll be telling them that I love them all night, which would be icky for everyone.

Anyway come on, don’t miss out on all the hot hillbilly action (or something like that) and come to Codsall on Saturday 27^th June 2015 (don’t forget to contact me for tickets first), oh and feel free to spread the word.

Be there or be square.

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:

• Twenty billion pounds on updating nuclear weapons.  Really?  
• Forty two billion pounds on a high-speed rail link (we do have phones you know) 
• Sixty to eighty billion likely to be lost on bank bail outs.  Don't start me off.

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.

  

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.

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!

 

Challenges

Challenge 1

A thousand years ago (oh alright, last year) we had building work done at Discombobulated Towers which, although a lengthy and often infuriating process, resulted in me having the Best Kitchen in the World (I might be a tad biased on this one).

The only problem has been the total destruction of my garden.  The tiny garden was the only place the builders could store their materials.  So it went from something like this

to utter devastation.  However the builders finished and moved out months and months ago and yet the garden still looks like this

Ok,  he's painted and moved the shed but let's not split hairs

Given that the other-half used to garden for a living this is a very sorry state of affairs.  Initially he claimed to have gardeners block, then he told me he’d lost his gardening mo-jo (full marks for inventive excuses).  Then, just as he’d got his motivation back, the rain started.  It rained cats and dogs and rats and elephants for months and months and months.  Well now the deluge has ceased and, by happy co-incidence, the other-half has next week off work.  He has promised that I will have a garden by the end of next week.  So I’m using this blog to encourage* him.  I will post another picture at the end of next week so you can see if he’s kept his word.  Gardner’s block my arse!

*I say encourage, I mean, of course, threaten.

Challenge 2

My old chum Al is running a half-marathon in June and will be raising money for Breakthrough Breast Cancer, a charity which, among other things funds the development of new treatments.  If anyone has any spare bundles of cash lying around you can sponsor him here.

Actually I'm not telling the entire truth when I call Al an old chum.  He is, in fact, my ex-husband. Still, water under the bridge and all that.  Running a ridiculous distance for a breast cancer charity is a lovely thing to do.  Smiley face.  And of course I wouldn't dream of standing in the crowd waiting to trip him up.  Or would I?  Sinister laugh.  I only say this to encourage him*.  See, now I've planted the seeds of doubt in his mind the least you could do is sponsor him.  No pressure.  

*I say encourage, I mean, of course, threaten.