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.

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.



 

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.

 

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

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!

Reasons to be cheerful

Picture from here

I saw the oncolcolgist on Wednesday and I'm a Stable Mabel.  There has been no marked change in my lymph nodes or lung lessions since my previous scan in November.  Also there are no new appearances of the little cancer bastards anywhere.  So while not as thrilling as last time (when the lung crap had shrunk) it's still very good news.  

Also good news is that the oncologist, Dr Oily, is retiring.  When he told me of his impending departure I think I was supposed to express regret.  Pah!  However, I was restrained enough not to leap around the consulting room punching the air shouting "see ya, wouldn't want to be ya".  I am the model of decorum.  Anyway, I'm hoping to see a less smug and self-satisfied doctor in future.

Other things that I've found cheery of late are:

• An advert featuring a cat and budgie, click here
• A biscuit advert with a huge aaah factor, click here
• Channel 4's Sochi advert, good on 'em, click here  

And on that jolly note I'll say ta-ra for now.  Normal whinging to be resumed next time.

Hot stuff

Picture from here

I started on the drug trial, TDM1, last week.  As it's a trial I had special treatment in the chemo unit.  There was a lot of attention, questioning and watchfulness from an assortment of nurses at regular intervals during the infusion.  Of course this is a Good Thing but, being an unreasonable git, I still found it annoying as it interrupted the intensive research I like to carry out while I'm on the unit.  That 'research' being the cover-to-cover reading of the type of celebrity gossip magazine I'm too snooty to buy but will happily consume in private if given the opportunity.  It also meant I had to be crafty about discarding the boiled sweet wrappers from the communal sweetie jar.  I think patients are meant to have one or two sweets not, like me, chomp their way through a hundred weight of the things and then come out with a sandpaper tongue, a major sugar rush and wonder why the NHS is short of money. 

Anyway, part of the irritating  info from the nurses involved possible side effects.  I did pay attention but have to admit I was thinking 'yeah, yeah, whatevs' as warnings were given, after all this chemo is known to have less side-effects than many others. 

It wasn't until a couple of days later when I stood simultaneously sweating and shaking in the supermarket that I wondered if the ice-cold/clammy combo was entirely normal.  There followed two days of grotty bed-bound  flu-like symptoms including an iffy temperature, a pounding head and everything aching.  

Fingers crossed that the cancer cells are feeling even worse than I did.

Discombobulation

Yeah, I know I'm using 'discombobulated' too much. But it's one of my favourite words and it describes how I feel, having recently gone from being an apparently healthy bunny to receiving a diagnosis of breast cancer with spread to my lungs. Actually 'mightily pissed off and frightened' sums it up too but that doesn't sound as good.

My second favourite word is espalier but that doesn't fit into my current situation at all. Unless there's some vile treatment (on top of all the other vile sounding cancer treatments) which involves being pegged out flat against a garden wall. I'll let you know if this turns out to be the case.

So the master plan is for me to use this blog to update people on how things are going with me - that way people can find out for themselves as and when they please, rather than have me send moany emails. Acutally a select few will still be receiving the moany emails. So maybe it would be more truthful to say that this blog will just give me another outlet to whinge. Of course it may be that I quickly lose interest in posting (or feel too grotty to bother). Who knows? I bet the anticipation is killing you.