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.

Wednesday, 23 March 2016

Stabby

Which one is best?  Helpful clue: I made the brown one

Despite the indisputable evidence that I'm rubbish at all forms of craft (remember the dress that didn't fit and my foray into crochet?), I recklessly bought a felting kit from a lovely shop in Bishops Castle.  The kit sat ignored for months and months in the land that time forgot, otherwise known as the cupboard under the stairs.  Then motivation arrived, in the scary shape of sis no 3, and hey presto I give you two felted cats.  I didn't have a clue what felting involved before I started.  The kit basically contained wool and some scarily sharp needles with which to repeatedly stab the yarn.  It was unreassuring to say the least to find that the kit also included a plaster (or band aid for any American readers) for any needle related mishaps.  Thankfully I didn't need the plaster but then I was already feeling pretty stabby due to an eye test a few days earlier.

During a routine examination the optometrist spotted that I have one pupil bigger than the other.  This is not a good sign.  In fact, according to my consultation with Dr Google it means instant death.  I informed my oncology team who gave me the once over and then sent me for urgent CT and MRI brain scans.  The most common places for breast cancer to spread are liver, lungs (got the t shirt for those two), bones and brain.  So it was a scary wait for results. Luckily for me the scans were clear.  I still have to see a ophthalmologist but I'm feeling pretty relieved for the time being at least.

I've had lots of CT scans but the MRI was a new experience.  It was nowhere near as claustrophobic as I feared but it was just as noisy as everyone says it is.  To mask the clanging and banging I was given headphones to wear during the scan.  But I wasn't impressed the music selection pumped into my ears.  Given that they were looking for a brain tumour I think the first song 'Crazy' was a bit of a poor choice, then as the machine rattled and whirred I had 'Good Vibrations' piped through.  Do you think they were taking the piss?  I tried to give the radiographer one of my hard stares (via the mirror contraption above my head in the machine) but he was unabashed.  Git.

If the whole pupil thing wasn't worrying enough I also developed another very frightening symptom.  I've had a couple of sudden attacks of not being able to breathe.  During the attacks I can't speak and make horrible gasping noises.  The second attack happened when I was out for Sunday dinner with the other-half and two of my sisters.  It's not a subtle attack and my poor family didn't know if I was choking on food, going to throw up or what was going on.  I staggered outside and after a few minutes my breathing gradually returned to normal.  Thankfully my GP is sure this is a harmless spasm of the larynx.  It hasn't happened since and I'm not putting my name down for it again.  I don't recommend the experience.

I think I love my GP as not only did he calm my fevered brow over the breathing thing he also completed the form I had from the government querying my right to receive state benefit.  I'm waiting for the official response from the powers-that-be but am hoping the GP's input will make them wave the white flag, the bastards.

On a happier (but no saner) note a few days ago the other-half and I got up at the crack of dawn on a frosty morning to go hare spotting.  We did see a couple leaping about but they were too far away for a photo.  But just to prove that I was out and about bright and early on a very cold morning:





Now here's hoping for warmer weather and a happy, peaceful Easter for everyone.

Wednesday, 2 March 2016

Avoidance tactics

Here are some things I should be doing:
  • Finding out about what will happen when the Cancer Drugs Fund (CDF) comes to an end next month.  I know it will be bad news and I haven't got the heart to read it.  (The CDF allowed patients in England to access some cancer drugs which were not otherwise available.)
  • Starting an online course I registered for about immunotherapy.  But it looks like it might require thought.  Besides, the dog ate my homework.
  • Looking at the scary form I've received questioning my right to receive Employment and Support Allowance (a state benefit) and asking lots of questions about my ability to work.  I don't have the mental stamina necessary to complete the form let alone hold down a job.
  • Completing the skirt I started making last year.  But I'm at the stage where I have to do things with interfacing and attempt a button hole.  Cue an attack of the vapours.  The pattern says 'only one hours sewing time'.  Ha ha bloody ha
The material is now even more 'vintage' than it was last summer when I bought it

 Anyway, here's what I've been doing instead of all the boring stuff above.

  •  Getting out and about in the winter sunshine


  •  Going on two, yes two, snowdrop walks.  Never let it be said I don't know how to live on the edge.  In case you're interested, or even if you aren't, one walk was the annual one in support of a local cancer charity, (many thanks to all the family members who turned out in support of this, once again you warmed my cockles) the other was at Rode Hall.

  •  Going to Cambridge for the weekend.  It was very chilly and I walked my legs off


 
Trinity College (I think).  My brain had frozen by this point.


 
Punting?  In that temperature?  Silly sausages!

  •  Stopping off at Ely Cathedral on the way home.  Truly my middle name is Culture (or possibly Louise, you guess).


  •  Getting excited about finding a local shop (Whitchurch) bearing the family name
 
What can I tell you?  I'm easily pleased

  •  Gazing soppily at a happy Cyril (the three legged monster cat).  Also taking him to the vet again after he got into yet another fight That's 53 quid on antibiotics thank you very much.
Bless his furry little chops


  •  Purchasing (for reasons too complicated to explain) a Playmobil Elvis.  I'm pleased to say he was well received.



Now before you start tutting and shaking your heads about my avoiding all the things I should be doing, the reason is not, as you might have thought, cowardice, laziness or excruciating hangovers.  No, the truth is I have been traumatised and the shock has rendered me quite incapable of anything except the most frivolous activities.  One of my sisters discovered (I know not how) that our old family home is now used for this.  And to think I thought finding out I had incurable cancer was a shock.  What did I know!