AWOL

I haven't posted for an age.  I'd like to tell you something scintillating, saying my absence is due to me gadding about with the jet set or my ongoing commitment to the NASA training programme.  But the truth of the matter is I've spent much of the past few weeks feeling like the the other-half looks

And as if feeling grotty wasn't bad enough, the above photo was taken during my last visit to the Christie and shows just how attentive and alert Nev can be during my appointments.

A short break in the whinging though, to tell you the good news.  I had scan results last week and amazingly, after eight cycles of the trial chemo SYD985, there has been a slight shrinkage in the cancer in my lungs.  I was staggered and, obviously, very pleased.   

I hope you made the most of that bit of good news because I'm about to start moaning again.  I do want to try to be honest here and not be some sort of happy clappy falsely cheery cancer blog, so here goes.

Even though I had good results the breathlessness has got worse and worse.  I'm fine if I sit still but any sort of movement makes me completely out of breath.  As you can imagine this makes doing anything, let alone getting out, really difficult.  It's not like I have a wild social life but even so I've lost count of the things I haven't attended due to breathlessness and fatigue.  Thankfully I did manage to get to a recent appointment with the Palliative Care Consultant at my local hospice, who is worth her weight in gold.  She could hear a deterioration in my breathing but thinks the problem might not be a result of the cancer (although it might be chemo damage).  She has referred me to my local hospital's respiratory bods.  I'm currently waiting for an appointment and I really cannot wait.  If there's anything that can be done to ease my poor lungs I'd be extremely grateful.  

Also, if truth be told, I'm pissed off with looking dreadful.  I've got thin hair, no eye lashes, hardly any eye brows and watery eyes.  My appetite has gone west and so I've lost weight and am looking extra haggard.  Ah cancer, the gift that keeps on giving.

In other news my Eddie Redmayne look-a-like doctor at the Christie is moving on to other  film roles research so I'll be seeing someone new in future.  It was nice to wave him off as he gave me good news (the cancer shrinkage).  He was also able to give good news to a fellow SYD985 patient (and pal) who'd seen a significant shrinkage after just two cycles.  So to any Secondary Breast Cancer bods reading, who are HER2 positive,  I'd say the SYD985 trial is well worth considering.

Meanwhile, in spite of everything, life goes on.  And I do appreciate it, honest.  Christmas preparations are underway. The festive twig is decorated and on display (we don't run to the extravagance of a tree at Discombobulated Towers),  Hot Fuzz is on the telly and, hurrah, it's very nearly present time.

I leave you with evidence (as if any were needed) that a three-legged monster cat and a cream sofa are not a good combination.

Happy Christmas.

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.

Snooze envy

Little sod

Look at the three-legged monster cat.  Fast asleep, which is how he spends about 18 hours a day.  I think the lucky blighter is taking the piss.  As, although I have been plagued with fatigue that has frequently had me housebound, sleep eludes me.  Last night was a particular bugger when I was wide awake from 1.30am onwards.  I think the pathetically low dosage steroids I'm on might be to blame.  I'm about to run out of them anyway as the onc wasn't particularly happy at prescribing them, but I begged as I was desperate to have some energy.  Hey ho.  While I'm in bleating mode I'm still struggling with constipation and the breathlessness on any form of exertion, like walking to the kettle, is incapacitating. 

So, that's the bad stuff but I do have some good stuff to report too.

Firstly I had CT scan results last week and again there was no change in the cancer.  Again I was astonished, and very pleased, as the breathlessness led me to believe that things were getting much, much worse.  I'm having more chemo in about 10 days time, so I will rugby tackle the onc to the ground then and stress the importance of trying to get the side effects (I assume) under control.  I say I assume that the breathlessness etc are side effects as I have no-one else to compare notes with.  However, I know a couple of people who are being assessed as to their suitability for the SYD985 trial I'm on, so perhaps I'll have someone to swap stories with soon (although I hope they're not blighted with breathlessness).  I just really hope all this yuckiness isn't my body waving the white flag.  I've now had about 60 cycles of various types of chemo since being diagnosed in early 2012 and I think that's a lot by anyone's standards.

As getting out and about is now very difficult I decided to bite the bullet and get a wheelchair.  This was, like the stair lift I got a few weeks back, a horrible idea in theory but in practice brilliant.  Also, I was extremely lucky in that I've got a rather whizzy wheelchair for free.  Some friends had a virtually unused chair that they no longer needed and they gave it to me for nowt.  Aren't people lovely!

Anyway last Thursday, out of nowhere, I had a good day.  So we quickly loaded up the wheelchair and headed for the hills.  The Stiperstones to be precise, where there's an all terrain track which enables people with disabilities to get out in the lovely Shropshire countryside (yeah, I know I'm biased).  Here's a picture of me pulling a very strange face and being rather windswept but, although appearances might suggest otherwise, enjoying myself.

Wagons roll

I'm hoping for some more good days soon so I can shout wheelchair steering instructions at the other-half and generally be a pain in the arse.  I'm also hoping to go wig shopping as my hair is thinning by the day (although more slowly than on some other chemos).  I usually just wear hats and scarves when bald but thought I might give a wig a try again, hopefully it won't be as sodding uncomfortable as the one I got a few years ago.

Also there was one good thing about last night's insomnia.  I found a hilarious twitter account (in fact I woke the other-half up by laughing so much).  Here's the link but don't click if you don't like swearing, rudeness, black humour and fluffy bunnies.  Don't say I didn't warn you.



 

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.


 

More of the same

For the last umpteen posts I have been complaining about breathlessness.  This post is not going to be any different.  In fact the problem has become quite a lot worse.  I'm OK if I remain seated but as soon as I do anything, even take a few steps, I become breathless.  This has resulted in a new installation at Discombobulated Towers.

Going up in the world, or possibly down

At first I wasn't too impressed at having a big beige plastic monstrosity in my house, but to be honest I don't know where I'd be without it.  For anyone pondering about having a stair lift I'd say go ahead, don't delay, it's a godsend.  It also has its amusing side if, like me, you happen to have a sister (no 1) who has a vertigo attack while trying it out.

While the breathlessness is hateful/frightening/depressing/a sodding pain in the arse, the enforced inactivity has given me an opportunity to torment the other-half.  He has to do everything now.  I have no puff for housework, cooking, de-fleaing the cat etc.  I've never seen someone with ironing rage before.  Apparently the way I chuck my clothes into the washing machine is a disgrace; tights all bundled up in a knot, jeans with one leg inside out, tops buttoned up etc.  What a wuss.  You wait until he experiences the delight that is finding a handful of tissues have been left in a pocket when he empties the washing machine.   I think he will truly blow a gasket.

No, don't go feeling sorry for him.  Look, here I am angelically smiling through chemo

And what do you think Nev was doing while this was going on?  Soothing my not particularly fevered brow? Feeding me chocolate?  Regaling me with amusing anecdotes?  Nope.  He snored through the whole thing.  Here's the proof.

Sleeping beauty

When it comes to chemo and blood tests and anything involving a needle my veins have finally waved the white flag.  So a couple of weeks ago I had a port implanted.  This has seen an end to the endless arm stabbing in a effort to try to find a co-operative vein but, to be honest, it's not as discreet as I'd hoped.  You can clearly see the port and some of the tube under my skin - it's a bit icky.  Hey ho.  Having it fitted was quite exciting.  It's done under local anaesthetic.  Imagine how thrilled I was when halfway through the procedure the fire alarm went off and the nurse announced "I don't think that's a test run".  We were on the ground floor and couldn't smell smoke so the nurse valiantly carried on and, thankfully, after a couple of minutes the alarm stopped.

I've been doing lots of traveling to the Christie (the hospital in Manchester where I'm currently on a trial chemo).  I've now had two cycles of the new swamp juice but, given the breathlessness, I really don't see how it can be working.  I'm having a CT scan on Monday so I will find out more shortly.  I suspect they will find more cancer in my lungs. Scary.  At least I don't seem to be having any other side-effects other than some fatigue.  So at the moment I am in limbo and feeling as cheesed off as Cyril (the three-legged monster cat) looks.

On the plus side I have been reading my head off.  My kindle is red hot.  And, although I can't really get out and about, as walking even short distances is difficult, I'm able to ride shotgun as Nev takes me out in the Shropshire countryside.  We drove over the Long Mynd the other day.  And I spotted something in keeping with the tone of this post - the Shropshire Sheep of Doom

And on that cheery note I'll say baa-baa for now.

Travels

Think of your own caption.  Words fail me.

Since I last posted I’ve been trekking to and from Manchester for further tests and, yay, treatment at the Christie.

Before I go on, I should point out that the above picture of the other-half does not show him in his driving to Manchester outfit.  Thank God.  This was what he chose to wear to a recent stag do when, instead of going to the seaside or rampaging drunkenly on the unfortunate streets of Dublin or Prague, the stag party chose to spend a weekend living in the woods, building shelters, fires and, more than likely, whittling their woggles to their hearts’ content.  I know. 

Anyway, the tests at the Christie came back OK and so last week I had my first dose of the trial chemo, SYD985.  No sooner had I had the chemo than I came down with the lurgy (a common or garden cold) so it’s very hard to say whether the resulting general grottiness and nosebleed were cold symptoms or chemo side effects.  I’m hoping for the former.  I was back at the Christie yesterday for a general check over and all seemed OK.  Of course it’s far too early to know if the chemo is working.  My breathlessness and coughing have continued so I’m just crossing all my digits and limbs and hoping for the best.

The one test that hasn’t been reported on yet is the lung biopsy.  This was to determine whether or not my cancer was still HER2+.  However, I was allowed to start the trial chemo without this result. 

Gawd the biopsy!  I know other people have had a lung biopsy with absolutely no problem, so if anyone has got one ahead of them please don’t panic.  However, I had bleeding right at the end of the procedure which meant I spent about ten minutes coughing up blood while still lying on the CT scanner bed.  Not an experience I’d care to repeat.  The radiologist patted me on the back and congratulated me on not being a “panicker”.  I can assure you that had I been able to leap up and run around the room, flapping my arms, shouting ‘I don’t like it’, I must definitely would have done so.  Anyway, the medical staff remained completely calm while all the yuckiness was going on and I was able to go home later that day.  So I don’t think my experience was particularly alarming medically just personally.  I had been warned that bleeding was a possibility only, being a bit dim, I had assumed the bleeding would be external not internal.  What can I tell you?  I only scraped a ‘C’ grade in ‘O’ level biology and now you can see why.

All the staff at the Christie have been a joy.  I have had mixed experiences of medical bods over the years but this mob, so far, have been nothing but lovely and, most importantly, very generous with tea.

While I’m being nice about medical bods I saw my hospice clinical nurse specialist the other day (the Shropshire equivalent of a Macmillan nurse).  She was incredibly helpful.  So moves are underway now for me to get a blue badge, disability living allowance (or PIP as it’s now called), and a rented stair lift.  Don’t get me wrong, I hate that all these things are necessary but the relief at being able to park in disabled bays (less walking) and not toiling up my steep stairs which render me breathless for ages overrides any regret at the state of my health.

While I’m talking about depressing stuff I’ve also started the process of formally recording how much intervention I want in end of life care.  It’s not a subject I’m particularly relishing but I’d much rather have my wishes recorded rather than have any argy-bargy further down the line.

Oh dear.  A bit of a grim post I’m afraid.  But that’s how it is at the moment.  If anyone cares to join me in digit crossing for the effectiveness of the chemo please feel free.  All welcome!

And, for no reason whatsoever, I’ll leave you with a photo I took a few weeks ago of a neighbourhood mog.  My cat fixation remains undimmed.