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.

Bracing myself

Picture from here

Before I launch into the latest codswallop, a quick word for readers in America.  The above picture shows Bobby Ball (don't ask) wearing braces.  That's right, braces not suspenders.  These are suspenders (and don't give me any of that garter belt nonsense).

Picture from here

If you don't believe me check here.  

Anyway now you understand the linguistic differences you can appreciate that my selection of the picture of Bobby Ball to illustrate this post is very funny.

Right, back to business.  In my last post I bored you with my trip to The Christie and my consultation with the doctor who looked just like Eddie Redmayne.  Well Dr Eddie has been in touch and I'm pleased to report that over the next couple of weeks I'll be making trips to Manchester to have a variety tests to check my suitability for a clinical trial.  So the ball is rolling.   

One of the tests is a lung biopsy, which I am not looking forward to one little bit.  However needs must.  Also a couple of friends, who are in the know, have assured me that it's not that bad.  However, if these friends are lying I will have my revenge.  This will possibly involve the appearance of large and tasteless gnomes in their gardens.  You know who you are and you have been warned.

So I'm bracing myself for the tests and the results and hoping like mad that I get on the trial, as the coughing and breathlessness continue ad sodding nauseam.

As if all this testing malarkey wasn't enough to be getting on with, last night I foolishly made a nod towards the twenty-first century and bought a modern mobile phone.  What a palaver buying it was.  The process seemed to take a thousand years and the young salesman was flummoxed by my total lack of interest in different types of phone (they all look completely bloody identical) and my blissful ignorance of all things technical.  The other-half was with me (getting a phone too) and he is even more of a luddite than me.  I've spent more exciting evenings cleaning out the cat's litter tray.  Anyway the purchases were made and now two brand new phones are sitting on the kitchen table  Neither of us has the heart to try to find out how to use them.  I wonder if the litter tray needs cleaning.
 

To the barricades

Picture from here

I daresay I shouldn't just nick photos from here, there and everywhere on the internet and stick them on this blog, but what do I care, I'm poorly, leave me alone.

Well surprisingly my appointment at the Christie came through a bit roger rapid, after last week's referral from my local hospital, and so yesterday the other-half and I made the trek up to Manchester to see if there were any clinical trials available.

Disconcertingly the doctor we saw was the living spit of Eddie Redmayne.  Somehow I resisted singing him a medley from Les Mis.  I hope you admire my restraint.  Anyway it seems, according to Dr Eddie, that there is a trial which could be just the ticket.  It's a bit similar to the TDM1 (Kadcyla) trial I was on a while back, in that once again a chemo drug is combined with herceptin to try to target the drug to the shitty cells rather than damage normal cells too.  In this case the trial drug is SYD985.  From them as is interested some more info is available here.  

I will have to have several tests to ensure that I meet the drug company's criteria for going on the trial.  In addition to this, tumour samples from my surgery have to be sent to America and I will also have to have a biopsy on the cancer in my lungs.  The new biopsy presents two problems.  Firstly, a biopsy sounds like No Fun At All (but obviously I'd bite the bullet).  Secondly, there needs to be some cancer that is both large enough and near enough to the surface to make a biopsy feasible.  Dr Eddie and a radiologist will be scrutinising my last CT scan to see if a biopsy is a go-er.  If not I won't be able to go on the trial.  I should hear from Ed on this one by the end of next week.  So fingers crossed.

If I am biopsy-able then that, plus the other tests and sending info to America mean that I won't actually get to start the trial for about six weeks.  This worries me a bit as I feel like my cough and breathlessness are worsening by the minute.  Hopefully, I'm just being a bit of a drama queen on this one. 

So that's where we are at the moment.  In limbo land really.  But things are moving along I suppose.  To keep my spirits up I'm stomping about the house singing this.  Feel free to join in. 

I bloody knew it!

Picture from here

I got my latest scan results yesterday and, as I suspected, the little fuckers in my lungs are up to no good.  I suppose I had clutched a very faint hope to my moth-eaten and mutilated bosom that the endless bouts of coughing and attacks of breathlessness might be a side-effect from my current hormonal treatment, but nah of course not.  The grim reality is that the cancer in my lungs is growing.  

While the scan results were pretty predictable, the oncologist's suggested course of action came as a bit of a surprise.  I'm being referred to the Christie (a specialist hospital in Manchester) to see if they know of any clinical trials that might be helpful or even perhaps look at my suitability for immunotherapy.  I'm pleased about this, as it'll be good to be checked over by the experts, if only for my own peace of mind.  If the Christie can't help then I'll be going back to my local hospital to try another chemo, vinorelbine.  And that, I think, might really be my last chemo option. 

The news has affected me in a strange way.  Rather than taking to booze (any more than usual I mean), surrounding myself with doughnuts or lying sobbing in bed, I have an overwhelming desire to chuck out all my clothes and buy new ones.  This can only prove that I really am the most incredibly shallow person ever (yet more unsurprising news).   I'm not even sure what sort of clothes I want - just not the ones I've currently got.  How about I go for my 1983 look:

Robert Smith in a skirt

Yes, I am wearing leg warmers over woolly tights.  And yes, that was cool.

Anyway once I get a) a new wardrobe or b) an appointment at the Christie I'll be sure to give you all the news.  How you'll stand the excitement I just don't know.

Until then, simply because I haven't mentioned him for a while, I'll leave you with a picture of my beloved.

Cyril, the three-legged monster cat

 

Kath

I first came across Kath Marsland when we both started blogging for a breast cancer charity's online magazine.  At that point she was recovering from treatment for primary breast cancer.  Since then we've exchanged emails and messages about life, the universe and everything.

During the next few months Kath, like 30% of all people who have had primary breast cancer, went on to be diagnosed with metastatic breast cancer (the cancer, now incurable, had spread to other parts of the body).  Throughout it all Kath maintained her fantastic sense of humour and sickeningly brilliant (me, jealous?) writing style.

As her disease progressed Kath thoroughly researched her options and had started fund raising to enable her to seek treatment in Germany.  

I'm very sad to say that Kath died just over a week ago, before she had the chance to go to the German clinic.  I read today that Kath had asked that in the event of her death any money raised on her behalf should be donated to Second Hope, the only UK charity focusing solely on metastatic breast cancer.

I'm writing about Kath here because I want to assure anyone who donated to her treatment via my Facebook post that the money will be going to a very worthy cause and, more importantly, because I want to commemorate, in my own small way, the life of a lovely, funny and very talented young woman.  

Some relevant links:

Kath's amazing blog

An article about Kath in the Manchester Evening News 

Information about Second Hope

Disgruntled

Nelly, one of my cats from days of old, who specialised in being grumpy

Today I saw the ophthalmologist, or as I like to call him (for reasons of my inability to pronounce any word with more than two syllables) the eye doctor.  This was after alarm bells were set ringing a few weeks ago when an optician spotted that my pupils didn't match.  Anyway I'm glad to say that the doctor could find nothing sinister and that, coupled with the good results from the recent MRI, means that I can draw a line under that particular experience.
 
The doctor was lovely but ...  Look, I keep toying with the idea of saying nothing that isn't true, kind and helpful (or whatever the saying is) but if I did that I'd never open my mouth.  So out with it.  The doctor was lovely but, bearing in mind he spends a good part of the day getting very close to his patients' faces, I think a good gargle with Listerine wouldn't go amiss.  Luckily my eyes were already watering due to the drops they used as part of the examination so I don't think he guessed that the fumes were close to making me pass out.

Talking of passing out, some old pals from down south visited over the weekend which was lovely.  We went out on Saturday night and although I didn't mix the grape and the grain, I still drank an awful lot of grain.  The highlights of the evening were

• giving a taxi driver a rousing chorus of Those were the days (oh the shame)
• Laughing uproariously when my friend fell down a flight of steps while other people ran to help (she was fine)
• Getting out the felt pens and drawing, yes again, on said friends face when she fell asleep (including one very rude drawing).
  

I've had worse hangovers but it was enough to be going on with.

And now my final moan.  Because I've been coughing a lot I had a chest x-ray over a week ago.  I still  haven't had the results, and yes I have chased.  I've got to ring the hospital again on Friday.  This will be two weeks to get x-ray results.  I'm used to waiting an age for CT scan results but x-rays?  It would've been quicker to just open my mouth extra wide and get someone to do a sketch.  I'm having a CT scan in just over a week anyway so the x-ray is beginning to seem a bit pointless.  

I'm not optimistic about what's going on with my lungs at the mo which is a complete bugger for all the obvious reasons plus it's been so lovely being on a non-chemo treatment.  The thought of returning to the chemo unit and all it's subsequent delights does not fill me with glee.  Still, all will be revealed after the scan - so going by the time it takes them to report on a x-ray that'll probably be around Christmas.  Happy new year.