Captain Haddock

Captain Haddock (picture from here)

Oh dignity, the ways in which you chose to leave me are many and cruel.  My lovely steroids have caused me to grow a full on whiskery beard.  I look like Captain Haddock.  So over the weekend the other-half smeared my lower face with hair removing cream and shaved me with the horrible plastic spatula thing.  Who says romance is dead?

Yesterday we were out in the car and Nev kept looking over at me. Now given our circumstances I'd be a liar if I said we didn't have wobbly moments.  I was concerned this was going to be one of those times.  Or was he perhaps worried that my portable oxygen wasn't working properly?  Or checking that I wasn't tired?  'What's wrong?' I asked as gently as I could.  'In this light', he replied, 'I can see some whiskers on your face that I missed'.   

So anyway, I'm glad to say the getting out and about has continued on some days (other days I'm a bit too knackered but I'm certainly not stuck at home all the time).  Look here's a picture of the techni-colour park to prove I do get out.

I've also been out and about to less exciting places.  Like the sodding chemist.  A couple of blog posts back I said I was changing chemists and that the doctor's receptionist had sorted it all out for me and it would all be wine and roses.  Ha ha ha ha ha.  I've gone from the frying pan into the fire as far as customer service is concerned.  Trouble is, another thing the steroids have done is made my voice go all weebly.  So when I tried to tear a strip off the inefficient, surly pharmacy 'assistant' the fact that I sounded like a nanny goat on helium lessened the impact somewhat.

I saw the lovely hospice out reach nurse last week.  She's confirmed that I can continue on my current dose of steroids. I'm pleased as, so far, the plus of having more energy out weighs the hairiness, weebly voice, red face and saggy skin.  She's also arranging for me to see the hospice palliative care doc again, who is also brilliant. And said doc is going to try to put a bit of a rocket under my local onc to arrange the sodding scan I asked for three weeks ago.  Watch this space.

   

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.



 

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.

  

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.

No place like gnome

I went to see the oncologist's (very nice) underling today.  She was a bit concerned that I hadn't yet been given an appointment to see an ophthalmologist (after all the hoo-ha when an optician spotted a variation in my pupil size a few weeks ago).  Bugger.  I'd been feeling fairly relaxed about the whole thing since the CT and MRI scans of my brain came back clear.  It seems there may still be cause for concern. 

I'm also going to have a chest x-ray next week (in addition to the scheduled CT scan at the end of the month) as I'm coughing quite a bit.  Hey ho.  Luckily I'm still suffering from jet lag after my Easter trip and that means I'm too knackered to get worked up about anything at the moment.

'Jet lag' I hear you cry in uncontrollable excitement, 'oh what wondrous foreign climes have you been exploring Disco Del'.  Well, let me tell you.  Pembrokeshire.  And going by how I feel today I can caterogically state that it is possible to suffer jet lag after a three and a bit hour drive from South Wales to Shropshire, so don't try to tell me otherwise.

Pembrokeshire was lovely.  Look:

Atmosphere in bucket loads

Spring time arrived (just)

Sunny Solva

We went with friends and their little boy.  So there were Easter egg hunts, football on the beach (although I was more of a spectator for this due to my lack of puff) and colouring in as well as the usual booze and sight-seeing.  So it was a brill holiday.  And lest you think I've gone soft in my old age ... if it's wrong to laugh at a six year old falling over and getting a proper drenching in a very cold sea then I don't want to be right.  Oh don't look at me like that, he was fine, if a little soggy round the edges.

True to form I kept an eye open for cats and found a humdinger up at the local church

Hiya Handsome

Then we returned home to an intriguing mystery.  A three foot tall plastic gnome has appeared in the back garden.  I've composed a short list of possible culprits which I'll be passing to CSI Shrewsbury shortly.  Here he is - I'm just hoping he doesn't invite any mates round.

And if anyone has any information on who placed him in the garden I'd be delighted to hear it.  Once I discover the identity of  the evil genuis behind this crime I will have my revenge.