Diversionary tactics

I haven't inflicted my burbling on you lot for ages.  Well your luck just ran out, I'm back.  I'm feeling twitchy, fearing that the scary orange git might actually win the American election.  So I'm trying some diversionary tactics which so far have included eating a bucketful of yummy shepherd's pie and tidying my underwear drawer.  Now I'm resorting to writing a blog post. Sorry.

Cyril gives the seal of approval to my underwear sorting

I had scan results last week.  The disease is unchanged.  Cue, yet again, surprise and relief.  As side effects go my eyes seem to be taking a hammering.  This is a known side effect of the trial chemo, SYD985, and can lead to having a chemo break or having to come off the treatment altogether.  I have regular eye examinations so we'll see what happens after the next one later this month.  I also seem to have some nerve damage, peripheral neuropathy, which isn't a known symptom for this particular chemo and caused the onc to get all excited. He prescribed a painkiller tailored to nerve damage.  I've adjusted to the painkiller now, and indeed it seems to be doing the job, but the first time I took it I felt like I taken a horse tranquiliser, then I spent a day being inordinately happy.  Normal service is now resumed.

The breathlessness, which I've been moaning about since forever, continues.  So yesterday I had another scan, an angiography, looking for blood clots in my lungs.  I should get the results in the next couple of days.
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The slow hair loss persists.  I found a really lovely wig place in the seething metropolis that is Much Wenlock.   I realise that this is going to be local to just about nobody other than me, but if you are in the area and in need of some extra hair then you could do much worse than going to see Nicky, who really knows her onions (and wigs).  I went with the other-half.  I tried on heaps of wigs and some of them looked truly dreadful on me.  The highlight was when he pointed out that I looked like one of the blokes out of Buck's Fizz in one of the wigs.  Even the very professional Nicky couldn't help doubling up at that one.  Anyway in the end I settled on this (the frown lines were caused by the trauma of taking a selfie):

I could've done with the wig the other day when we went out on another wheelchair excursion, this time to our regular stomping ground, Attingham Park.  I learned two valuable lessons on this trip.  1)  Being wheeled around is flipping freezing, wear twice as many clothes as you think you're going to need, and a wig.  2)  On no account set off on a wheelchair perambulation thinking to yourself, as I did, "Oh I think I need a wee, but it'll be OK I'll leave it till I get back".  Oh boy.  Half an hour of being jolted about on uneven paths played havoc with  my bladder.  By the time we got back to the main buildings I didn't know what to do with myself. I leapt out of the wheelchair and sprinted up the path to the public loos.  Passers by must've thought I had a miracle cure.  On the plus side it was nice to get out and there was still colour in the walled garden despite the onset of autumn/winter.

 

While the other-half has been lovely, escorting me to numerous medical appointments and wheeling me about in my unwinged chariot, he has also been a major pain in the arse.

Exhibit one

 
Here he is panicking in a clothes shop (Fat Face for the eagle eyed amongst you) when he tried a gilet on and got stuck in it when the zip jammed.  Readers, he ended up buying it, I kid you not.

Exhibit two

 
Here's Nev having a bit of a tantrum.  He decided to sort out the kitchen cupboards where, unsurprisingly, half the stuff was out-of-date.  "I hate waste" he cried and generally grumped about the place for a good half hour.  Boo hoo hoo.

Then there are the Nevisms.  In the past he has uttered such classics as "that rabbit is memorised" (when he meant mesmerised) and "Is the Pope Jewish?", er no.  Yesterday he excelled himself.  We were heading off to the hospital for my scan.  He asked me which department we had to go to.  "Is it where you had your autopsy?" he asked.  Cheers Nev.  That's a happy thought.  (He meant biopsy by the way.  Idiot.)

Other family members have also been looking after me a treat.  My sisters are running a meals on wheels service to beat all others.  It's spaghetti bolognaise tomorrow night.  Mitts off, it's all mine.

Nearly all my hospital appointments now take place in Manchester (since being referred to the Christie by my local hospital).  This is, in many ways, a good thing.  It's great to get treatment at a centre of excellence.  However, it is a bit of a trek, one hour forty minutes each way.  I shouldn't moan really as many people travel much further.  Anyway, on our last couple of visits, with time to kill between appointments we've popped into the Maggie's Centre near the hospital.  Maggie's Centres are places offering all sorts of support to people with cancer (and their families etc) in an non-hospital enviroment - more info here.  We went in just to have a cup of coffee and what a lovely surprise it was.  I took a couple of photos which give an idea what it's like

 

If I tell you that the building was designed by Norman Foster you'll understand that my photos don't do it justice.  You can get a better idea of it by looking at the Manchester Maggie's website.  If you're in the UK there's also a TV programme on Maggie's called Building Hope (which is available for a few weeks).  I haven't seen it myself yet but it might well be worth a look.

Finally, I'd be putting a massive and false cheery spin on things if I was to pretend that everything is rosy-ish.  As I've mentioned before I'm a member of an online support group for people with secondary breast cancer.  This group is hugely important to me.  Recently we had five deaths in just three days.  This is, of course, the nature of the disease, killing as it does approximately 1,200 people in the UK every month.  All untimely deaths are tragedies and losing people you've built bonds with, both online and in person, is hard.  It's also a reminder of where this disease ultimately leads for all of us.  There's not a lot more to say other than to link to Second Hope, the secondary breast cancer charity which meant so much to the women we recently lost.

Kath

I first came across Kath Marsland when we both started blogging for a breast cancer charity's online magazine.  At that point she was recovering from treatment for primary breast cancer.  Since then we've exchanged emails and messages about life, the universe and everything.

During the next few months Kath, like 30% of all people who have had primary breast cancer, went on to be diagnosed with metastatic breast cancer (the cancer, now incurable, had spread to other parts of the body).  Throughout it all Kath maintained her fantastic sense of humour and sickeningly brilliant (me, jealous?) writing style.

As her disease progressed Kath thoroughly researched her options and had started fund raising to enable her to seek treatment in Germany.  

I'm very sad to say that Kath died just over a week ago, before she had the chance to go to the German clinic.  I read today that Kath had asked that in the event of her death any money raised on her behalf should be donated to Second Hope, the only UK charity focusing solely on metastatic breast cancer.

I'm writing about Kath here because I want to assure anyone who donated to her treatment via my Facebook post that the money will be going to a very worthy cause and, more importantly, because I want to commemorate, in my own small way, the life of a lovely, funny and very talented young woman.  

Some relevant links:

Kath's amazing blog

An article about Kath in the Manchester Evening News 

Information about Second Hope

The Lurgy

I’m starting the New Year in the traditional way, by feeling like a bag of bollocks.  I’ve been fighting off the lurgy for a few days but overnight my immune system waved the white flag and I’ve woken up with a streaming nose, hacking cough and total and utter grumpiness.  

To make matters worse I think they’ve changed the recipe for Lemsip.  I used to love Lemsip.  It almost made having a cold worthwhile but now, due to an ingredient change, or the state of my chemo-altered taste buds, it tastes like a menthol/antiseptic cocktail that’s been mixed in a disintegrating hot water bottle, only worse.

The lurgy does have some consolations though.  I’ve got up early (to spare the other-half having to listen to me cough) and draped myself on the sofa while watching the 1953 version of The War of the Worlds on the telly and, best of all, am snuggled up under a really wonderful present.  This picture doesn’t do it justice, but look what a friend made me, a completely gorgeous quilt.  

 

It’s in exactly the right colours for my sitting room, so even though I’m poorly, I'm colour co-ordinated.  I'm afraid I disgraced myself a little bit and came over all emotional when I was given the quilt but, honestly, what a beautiful gift.  

Talking of wonderful things.  Christmas.  We had a real slap-up, no holds barred, rip-roaring Christmas.  I stayed in a very swanky house with lots of family and friends, including all three of my sisters.  It was a bit of a Downtown Abbey experience (only we were all very good and no-one behaved like arch-bitch Lady Mary).  Just look at where we had our Christmas dinner. 

Yes, it's a wonky picture, but alcohol had been taken

At the risk of sounding as my dad used to say, as soppy as a sack load of bottoms, it was a truly lovely Christmas.  Also, I've now got ideas above my station and won't step outside the front door unless I'm wearing a tiara. 

We took the Christmas-cake-that-nearly-caused-a-divorce-in-the-making with us.  Amazingly most of it was eaten, probably due to the industrial quantities of sherry and brandy it contained.  When it came to cake decoration we decided to go with the true meaning of Christmas and had an Ice Road Truckers theme.  And here it is (another poor photo but you get the gist)

We are now taking orders for next Christmas.  Don't all rush at once.

Since Christmas, normality has returned.  I've come back to a dose of chemo with the usual temperature spike and trip to hospital the following day (New Years Eve).  All was OK and I was released after a thorough checking over, although I could've done without the four attempts to get a cannula in to administer IV antibiotics. 

I've also had a CT scan and am waiting three weeks for the results, which is as usual, scary, scary, scary.  

But for now I'm concentrating on lying on the sofa sniffling.  If anyone wants to buy shares in a tissue factory now's the time.

(Apologies if this blog post is displaying a variety of font sizes, I think my computer has the lurgy too).

Second Hope

So here it is, the exciting news I've been hinting at (with all the delicacy of a drunken hippo) for the past few weeks.

Second Hope is a brand new charity that I'm absolutely chuffed about.  It's the only charity in the UK specifically for people with metastatic breast cancer (also known as advanced, secondary or Stage IV breast cancer).  It aims to raise awareness, provide support, campaign and also fund research.

Please have a look at the Second Hope website where there is loads of information including practical advice, more about the charity's aims, founder, trustees etc  (and even a little bit by me).  

I've mentioned time and again in this blog how isolated and hopeless a diagnosis of metastatic breast cancer can make people feel.  This charity is a real light in the darkness.  

Sadly the founder of Second Hope, Julie Phillips, died on Saturday, missing the launch of her brainchild by just a few days.  This heart-breaking news has rocked the online metastatic breast cancer group of which I'm a member, but we are united in our determination that Second Hope will go from strength to strength and be a lasting and fitting legacy for a remarkable woman.  

I cannot overstate how much the launch of this charity means to me.  Please, please take a look at the website, like the Facebook page and maybe even consider making a donation.

Thank you.

Decisions, decisions

Match pot frenzy

Decorating.  Yuck.  Not that I did any of the hard work, that was all down to the other-half, but I did put up with having the contents of the dining room (which was the room being done up) scattered through out the house driving me bonkers.  I hardly complained at all.  Truly I am a saint.  In the unlikely event that you're interested, after purchasing virtually every match pot known to man, we finally decided on the colour in the middle of the bottom row called 'scullery green'.  It must be a great job making up the titles for paint colours, I think 'disgruntled dormouse' or 'hangover horror' would be good names, but for all I know they might already be just that.  Anyway the decorating is done and normality, such as it is, has been restored at discombobulated towers.

I now have another vital decision to make.  I have a hair appointment next week - do I remain a brassy blond or go back to being brown?  Oh the indecision!  The chap at the hospital who does my regular heart tests (to check the chemo isn't wrecking my ticker) told me, unasked, that he though my old colour was better.  Nothing like a bit of unsolicited 'medical' advice is there!  The other-half is sitting on the fence on the issue (what a chicken).  Oh what to do?  The weight of the world is on my shoulders.

Pressing decisions aside, I did had some fun in March.  I left sleepy Shropshire for a trip to London, to meet up with some fellow metastatic breast cancer bods.  It was great to meet up with people face to face and if I tell you we arrived at the pub at 12.30pm and that I left at 6pm I think you'll get a flavour of the day.  Booze flavoured!  Yum, my favourite.  After that I went to my pal M's place in North London where I collapsed in a heap over a lovely plate of bangers and mash while watching the Lego Movie.  I have had a certain song lodged in my brain ever since.  My pal has a lot to answer for!  After a short stroll on Hampstead Heath the next morning I left for Shrewsbury, if I'd stayed any longer I might have been corrupted by those fancy London ways and ended up getting groovy, and that would never do.

Not content with going to the Big Smoke I also went to the pulsing metropolis that is Much Wenlock (population 3000) to see Jeremy Hardy, who was, of course, very funny and very scathing about the cockwomble, which is always a good thing in my book.

I've been continuing with my current chemo, capecitabine, with no idea if it's working or not.  My next CT scan, at the end of the month, will reveal all.  It's an odd chemo for me as it makes me feel intermittently yuck but with no discernible pattern.  So one day I feel, to use a medical term, like a bag of bollocks and the next day I'm tickety-boo.  Very odd.  I'm just making the most of the tickety-boo bits (and moaning like mad during the bollocky bits).

I've also done another whingy blog post for Vita (the online magazine for Breast Cancer Care) that can be read here if you're that way inclined.

Finally I can report that Cyril, the three legged monster cat, is keeping me on my toes.  Yesterday he decided to repeatedly attack a hapless (and very large) ginger and white cat who had the temerity to stroll down our street.  I had to run down the road after the pair of them in an ineffectual effort to stop the fight.  The street was littered with ginger fur.  Oh the shame.  And just look at him, butter wouldn't melt!

Be afraid, be very afraid

 

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!

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.