Saturday, 18 June 2016

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.

Wednesday, 8 June 2016

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 RedmayneWell 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.
 

Friday, 20 May 2016

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 trialI 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. 


Friday, 13 May 2016

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

 

Tuesday, 3 May 2016

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

Tuesday, 12 April 2016

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.


Thursday, 31 March 2016

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.