Itchy Xmas

A whinge to start off with, then I'll put my festive trousers on.

I'm two weeks into my new chemo combo (capecitabine and lapatinib).  I have been fortunate enough not to have had, as yet, any of the yuckier possible side effects (sickness, explosive visits to the loo etc) but I am pretty tired a lot of the time, am incredibly itchy all over and my nose and chin are covered in acne.  I am not impressed.  I've now got ointment, antibiotics and antihistamines so hopefully the skin rebellion will calm down soon.  Weirdly it's the acne that I hate most.  Thinking back, I hated going bald (on a previous chemo) and I hated losing a breast (the mastectomy) but I hate, hate, HATE having a face full of spots.  I suppose my attitude to a relatively minor side effect means I'm either completely barking or a deep and complex person.  Big prizes for the correct answer.

Miserable sods, like myself, who'd like more moaning can see my latest blog for an online breast cancer magazine by clicking here.  For happier souls let's move on to festive frolics.

Something very strange has happened at Discombobulated Towers.  Rather alarmingly the other-half seems to have turned into Kirstie Allsop.

First we had the homemade Christmas wreath

The other half looking uncharacteristically bashful

and here it is in pride of place

So far so good.  But then things started getting a bit bizarre.  He made me a Christmas card.  Aw, touching, I hear you cry.  Hold your horses!  First a little background ... A few weeks ago the other half and I were oohing and ahhing over a cute mouse who was helping itself to food from the bird table and then scurrying back to the safety of it's home (we guessed) under the garden shed.  He saw it a few times after that and commented on what a large, well fed mouse it appeared to be.  Gradually the realisation dawned that the cute little mouse was in fact a big, scary rat.  I say scary because even Cyril (the three-legged monster cat) ran away from it.  Anyway, the other morning I came down to find this Christmas card waiting for me

The other-half, age 49 and a half, had stayed up to two in the morning making this thing of wonder.  It says Happy Ratamas, is partially made out of an old sock and has an illuminated nose.  It also has a lovely stand (not shown) made out of the middle of loo roll.  Truly I am blessed.

I returned the favour and made him a card too.  However, I'm not showing mine because a) it's nowhere near as good as the other half's and b) it features a misplaced apostrophe (oh the shame!)

All of which brings us on to the piece de resistance.  Last Saturday saw the other-half's family Christmas party.  The brief was to wear something Christmassy, cue lots of festive jumpers etc.  The other-half decided to do something different.  He spent a whole afternoon constructing a hat made out of brussel sprouts, fairy lights and a light-up tree.  It involved a great deal of swearing, a lot of electrical tape and made the whole house reek of festering veg.  The completed article, as well as being something to behold, also weighed about two tons.  The other-half's neck is now two inches shorter.  Anyway without further to do, here it is, and a Happy Christmas to all!

Bad ideas

If anyone is looking for some bad ideas I have a few you could use:

1.  Lose the ability to tell the time

I woke up this morning, got out of bed, turned the heating on, made my morning cuppa and fed the cat.  Then I double-checked the time.  It was 3.30am.  

2.  Try to compete with the cat for warmth

Strangely enough, this afternoon I felt rather tired (I wonder why).  I decided to have a snooze in front of the electric fire.  Stupidly I failed to take into account what Cyril (three-legged monster cat) would make of the situation.

Della 0 - Cyril 1

3.  Give poorly liver a good bashing

So, what do you think would be a good thing to do on finding out that not only has the cancer in my lungs grown but has now also made an appearance in my liver?  Maybe double check my will, meditate like mad or increase my vile green juice intake?  Nah.  Instead I gave my liver a (very enjoyable) evening out and a thorough hammering with an exciting lager/wine combo.

4.  Behave like a 17 year old (with apologies to all sensible 17 year olds out there)

So what next after mixing several gallons of the grape and the grain?  Some damage limitation maybe, like straight to bed with a pint of water?  Nah.  Let's live dangerously, get the felt pens out, and draw on the face of my hapless friend who'd fallen asleep on the sofa.  Thankfully, the following morning, the pen washed off.  Otherwise I would not be around to type this today.

5.  Indulge in public nudity

As you can imagine I attend a lot of medical appointments.  Dignity is a thing of the past and I now peel off my clothes at the drop of a hat.  However, it really wasn't a very good idea to walk into a reflexology appointment on automatic pilot.  I was half-way through taking my top off when I caught sight of the poor reflexology lady's face and remembered that this was most definitely not a stripping off sort of appointment.

6.  Expect any form of co-operation from our feline overlords

This weekend I accompanied friends to the heaven-on-earth that is Shropshire Cat Rescue, where they were choosing which cat to adopt.  All of this is of course, a very good idea.  However I, rather optimistically, decided to take a photo of Pickle the soon-to-be-adopted cat.  My photographic endeavours were scuppered by Pickle's ginger and white cage-mate, Ed. 

I believe the young people call this photo bombing

7.  Experiment in interior design

I've included this one to make myself feel better, as this isn't my bad idea.

A loo roll cover seen in a cafe toilet in Alnwick.  The owner assured me that she'd won it in a darts competition and had not made it herself.


So, there you have it, a selection of bad ideas you might want to try yourself.  No need to thank me.  

I start my new chemo, capecitabine and lapatinib, next week.  Here's hoping that my cancer thinks this is a very bad idea and receives a good kicking from the combo.  Fingers crossed.

And finally, it's December now, which means I am officially allowed to mention Christmas.  So here, have a courgette penguin, as seen at the flower show in the summer. (Oh, OK a zucchini penguin then, if you don't speak English proper like what I do.)

Don't scoff, it's heaps better than the mawkish nonsense produced by John Lewis.  And if you don't agree with me see Charlie Brooker's view on Christmas adverts, a man after my own heart.  Happy Christmas!

A shit sandwich and seeing the sights

First of all let's deal with the shit sandwich, and thanks to Sarah for that expression, I'd never heard it before and am now using it at every opportunity.

My latest scan results show that my current chemo, the lovely TDM1, has stopped working for me.  I had a good run on it, nearly 18 months but now the cancer has outwitted it and is on the move again.  The crap in my lungs has grown and it also seems to have spread into my liver.  I saw the oncologist last week who gave me this news.  He wants to go over my scan again with his doctor chums (why he couldn't do this before my appointment last week I don't know but hey ho).  I go back to see him this week for his decision on what to do next but the most likely option seems to be a change in chemo.  So grim news, but there will be other treatments to try and, at the moment, I feel OK so for now just sticking my head in the sand and fingers in my ears while singing la la la.

More news of the shite variety this time regarding treamtments for advanced cancer.  If you've read my rants for any time you'll know all about certain cancer treatments not being made available to National Health Service (NHS) patients purely due to cost. However, people in England have been able to access these treatments if their NHS oncologists applied for funding through the Cancer Drug Fund (CDF).  Now the NHS have decided to look at excluding 42 cancer drugs from even the CDF due to cost.  Of course several treatments for advanced breast cancer are on the list.  Read more about it here.  This is dreadful news.  It makes me depressed, scared and very, very angry.  It feels like the NHS are saying 'oh just fuck off and die' to people with advanced cancer.  I shan't say anymore here other than if you feel like signing a petition about it then there's one on the go here.  Just like most people I have my doubts about the effectiveness of petitions but it's worth a try so if you've got a spare five minutes please do sign.

OK, on to happier stuff.  We had a refund from the holiday company after our stay in the dirtiest holiday cottage in the world.  This refund coincided with a 30% off everything sale at Laura Ashley.  What can I tell you?  I was weak.

Also I've been gadding about again.  

We've been to see friends in Monmouth and visited the spectacular Chepstow castle (the town of Chepstow itself is a bit run down but if you close your eyes and head for the castle it's great). 

We went to London to see the poppies at the Tower of London (one for every British soldier killed in WW1), just as spectacular and moving as everyone says

 

And we spent a weekend in Somerset in the gorgeous town of Wells.  Everyone should rush there at once, it's beautiful, look:

To add to all the delightfulness, the town was cat central.  The stunning cathedral has it's own resident cat Louis who we met but failed to photograph.  Never mind, I nicked a lovely picture of him from off the internet:

Picture from here

 The Bishop's Palace also has a resident cat, Maisie, and here she is showing me around:

Win big prizes by admiring my lovely new coat!

And to cap it all the B & B we stayed in, which was utterly lovely, despite it's unpromising name of Beryl had two cats, twenty-two year old Clementine and the much younger Willow, pictured below, who was very cuddly indeed:

So to sum up, despite crap news on the health front, I'm still having a great time.  I shall end with a picture of some brilliant artwork made and sent to me by a friend who also has advanced cancer but still thought of me when she heard about my latest scan.  Aren't people lovely, not to mention talented!

I'm a lucky ducky

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!