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.

No go

I have recently had a birthday.  Here are a couple of (poor quality) photos of presents from sis no 2 and my mate T.  Both were gift wrapped.

I bet you envy me having such caring friends and relations don't you?  

Yep it's fair to say I've been a bit bunged up of late.  Probably due to the liquid morphine I take to help suppress my cough.  In a vague and unsuccessful nod at being modern I bought some looser jeans a few months ago, a sort of cowardly 'boyfriend' fit.  I believe this was in vogue about five years ago, so pretty hip and happening by my standards.  Anyway these looser fit jeans have now become my constipation trousers.  I recommend them.  No fashionista would be without a pair.  Nice and roomy if you catch my drift.

So I don't bother blogging for ages and then I give you an opening paragraph on constipation.  Have you missed me?

I had results from a CT scan a few weeks ago.  I was very surprised and very pleased to learn that there was no change in the disease.  I really was staggered as the breathlessness on any form of exertion (eg brushing my teeth) had me convinced that the cancer in my lungs had been growing apace.  The medical bods then tried me on antibiotics as some inflammation in my lungs was evident but they don't appear to have done anything.  I'm now on a trial week of steroids to see if they help.  They don't seem to have done anything for my breathlessness but I do have a bit more energy thank goodness.  The fatigue has been pretty crushing at times.  To be honest the fatigue has been one of the main reasons I haven't blogged recently.  That and spending all my time in the loo (with scant reward for my efforts).

Oh I lie.  I did get a reward for all my lavatorial efforts.  A fractured rib.  I have pathetic bone density and the strain proved too much.  It's on the mend now but for a couple of days it was ouchy to say the least.

So there you have it, my past few weeks.  Very little gadding about to tell you about.  Although I did go to a vintage wedding.  Look we got dressed up

Somehow the other-half managed to get his (rented) hat coated in horse radish sauce.  There really is no end to his talents.  The hire company haven't said anything ... yet.

I have a whole blissful week ahead of me with no medical appointments.  Hallelujah.  But next week sees another CT scan and I'm afraid I'm not optimistic about the results I'll be getting the week after that.  But whatever I'll keep you informed, whether you like it or not. 

Oh and while I'm being a misog, I'm pretty sure I'm losing my hair again (for the third time) even though it isn't a listed side effect of my current trial chemo.  Arse biscuits!

Ta-ra for now.


 

Waiting game

Picture from here

It's anxious waiting time at Discombobulated Towers.  I've had some of the tests at The Christie to see if I'll be able to get on to a clinical trial and so far, so good. However, I will be going back twice next week for three more tests, so it's not over yet by a long chalk.  

In the event of all being well, my first dose of the trial chemo is scheduled for 29th June, and frankly it can't come a moment too soon.  I've not had any treatment at all for about three weeks now (this is a requirement for getting on the trial) and the deterioration in my health has been pretty marked.  Added to the worsening coughing and breathlessness are pains in my back and the type of fatigue that has me wondering, in my darker moments, how I'm going to cope with the trips to Manchester or even if I'm going to be well enough to start chemo.  There is a temptation to go back to my local hospital and say give me some chemo NOW!  However, this isn't a wise option.  The local oncologist has told me that neither of my two remaining chemo options are likely to be of much benefit to me (in fact the last option has only an 8-10% chance of working).  So I'm hanging on, waiting and hoping for the clinical trial at The Christie.

I do have lighter moments though.  These include:

• Seeing the Eddie Redmayne lookalike onc once more at the Christie and being reassured by how positive he is about the trial
• Spending time with sisters 1, 2 and 3.  *Highlights include; discovering sis no 1 patrolling the garden at dusk, killing slugs while chanting 'double, double, toil and trouble'; sis no 2 and I buying identical handbags and walking around the local open gardens event like two Fashion Girls; introducing sis no 3 to The Sewing Bee and hearing her talk enthusiastically about pvc.
• Watching fluffy TV, like Love, Nina
• Watching bonkers TV, like Versailles 
• Getting Germany in the other-half's family Euro 2016 sweep stake.  Rest assured, I will not let any winnings change me.

*  I have absolutely no confidence in my ability to use semi-colons correctly.  I usually avoid them but today decided to throw caution to the wind (that's the kind of wild devil-may-care person I am).  Feel free to take me to task if I have played fast and loose with this punctuation mine-field.

Bugs

January.  Cor.  It went on a bit, didn't it?  I started and ended the month with the lurgy.  Not a serious lurgy, just the common or garden lurgy that everyone gets but even so.  What with that and the usual chemo stuff it seems like I spent most of January feeling moderately crap.  This is, of course, light weight crap compared to what lots of other people are going through but I'm not going to let something like that stop me from whinging.

And the weather.  The sodding, sodding weather.  Grey, miserable, windy, rainy.  Precious few of those sunny, chilly, crisp days that make winter bearable, even enjoyable.  In fact I think we've only had one frost this winter.  Which is probably why bugs, of all varieties, abound.  I'm full of germs, the garden is full of slugs and the cat is full of fleas.  Here he is, like me, feeling sulky.

I had my latest CT results toward the end of January.  Dear God I was scared.  I'm always frightened going for results but this was worse than usual.  I suppose it's because I know I'm running out of treatments.  There are a couple of chemos left for me to try but once all possibilities are exhausted there is nothing left but palliative care.  Of course, I knew this all along since day one of being diagnosed with metastatic breast cancer, but as the time comes nearer it all gets scarier and scarier.  My pal Kath has put it a million times better than I ever could.  Read what she has to say here. 

Anyway, this time I was lucky.  The CT showed stable disease.  Also, more good news, the medical bods are pretty sure that the stabbing pains I get in my chest and side are nerve related (from the surgery).  However, as I have now had 54 cycles of chemo the time has come, according to my onc, to give the chemo a rest and try a hormonal treatment, exemestane.   While I will be delighted to have a break from chemo, cannulas and all the associated palaver, I am a bit concerned about stopping a treatment that seems to be working.  I've checked this with the onc but she's definite that I need a rest and I assume she knows her onions.  I'll have another scan in three months time to see how things are going.

Although this has been a bit of a mega-moan January hasn't been all doom and gloom.  There's been the trip to see the other-half's nephew in panto (oh yes there has), my hair finally getting long enough to discard hats and scarves and, above all, sister no 2's latest foray into crochet.  A Death Star.  I kid you not.

 

Hot cockles!

Well my cockles have been well and truly warmed.  The fund raising barn dance (raising money for Breast Cancer Now and Compton Hospice) took place last night, and what a successful evening it was on all fronts!

To start off here's a couple of photos of the two of the cuter attendees who (like many others) had come dressed up to the nines.  Howdy pardners.

So many people made so much effort to ensure the evening was a success that it's hard to know where to start but, at the risk of this turning into a blub-fest worthy of an Oscar winner, here goes:

First and foremost huge thanks to Ian and Amy (the other-half's nephew and his lovely wife) who came up with the idea of the event in the first place and then worked tirelessly to make it a success.  The mere thought of the amount of hard graft they took on makes me want to have a lie down in darkened room.  And they did all this in the same year that they organised their house move from one area of the country to another, their overseas wedding and also their UK wedding celebrations.  Some people are just gluttons for punishment!

Also, thanks to more relations, namely Lee, Lydia, Sam and Gail who helped organise, obtained fantastic raffle prizes and sold heaps of tickets.

Lip-smacking thanks to all the cake makers (cakes were also sold on the night to raise dosh).  There were some fantastic and tasty creations, including industrial quantities of secret-recipe muffins from sis no 1 and cakes bearing the logos of the charities made by the lovely Carmel.  Even the other-half put his chef's hat on:

Big cheers too for the raffle prizes, either supplied by friends and family or obtained by them by going to their employers and local businesses.  Big thanks in particular go to the kind generosity of Virgin Trains.

Thanks to all those who helped set up on the evening, organising things like a well-oiled machine in a very limited time, while I faffed around like a particulary ineffective fart in a thunderstorm.

Thanks too to those who couldn't make it but still gave donations, which were very much appreciated.

And of course the evening would have been nothing without the support of all those who came along.  We had a really good crowd who completely entered into the spirit of things, the dance floor was full all evening from start to finish.

One of the main reasons the dance floor was so busy was the all round excellence of the band, the Slippery Hill Boys and their caller.  I really can't praise them highly enough.  Quite simply they were bloody brilliant and I wouldn't hesitate to recommend them to anyone wanting a hoe-down to remember!  Here they are setting up

And here's the crowd thanking them at the end of the night

So the nitty-gritty.  As the result of everyone's generosity £1400  was raised for the two charities.  I am totally chuffed.  So before I start blubbing and hugging everyone in sight I'll sign off for now with more photos from the night.  Yee-haw! 

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