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.

Something's afoot

With apologies to sis no 3, who is a bit phobic about feet (and frogs and felt, she's a bit wussy really)

Even though, for the past twenty-odd years, I've lived just half an hour away from Wolverhampton I had never set foot inside the art gallery there.  I rectified this error this week when sis no 1 and I went to see the Ron Mueck exhibition.  It was amazing.  It's only on until 2nd November so if there are any Wolvo residents reading this get yourselves down there pronto.  The pieces are fantastically life-like.  At the risk of coming across like some kind of weird foot-fetishist (I'm not, honest) look at this:

You can see the whole piece by clicking here

There are only five pieces of his work at the gallery but by jimminy they are worth seeing.  None are to scale.  They are either smaller than life or like, 'Wildman', absolutely huge:

One of the gallery workers said that this work gave him the willies late at night.  Make of that what you will.

Sis no 1 and I also stayed for the curator's talk which was fascinating.  If there's a form to fill in I'm requesting to come back as a curator in my next life, that or a wombat (cute) or maybe a camel (I'd like the uninhibited spitting opportunities).

Health wise I seem to be doing OK, continuing with the drug trial and keeping my fingers crossed.  Today I went to the local GP for a general once over (cholesterol, blood pressure that kind of thing).  Turns out I'm a picture of health.  Apart from the sodding advanced cancer of course.  

Anyway, buoyed up by the news that I'm not in too back nick all things considered, I bounced into town and made a start on the Christmas shopping (don't hate me).



 
 

Brace yourselves

In the past few posts I’ve mentioned some of the recent shenanigans I’ve had with my local hospital.  I bet you thought I was going to spare you the details didn’t you?  Well you were wrong.  It’s just that up until now I haven’t had the heart to put the saga into writing.  But unluckily for you I have splurged it all out below.   

I had intended to reward anyone who was prepared to read through all the blah, blah, blah with a picture right at the end, of a pony that looks like one of The Beatles.  Unfortunately I can't seem to add photos today.  No idea why.  Just another thing to moan about.

Talking about moaning, here we go.  

Back in March I rang the specialist nurse at the hospital complaining of breathlessness on exertion.  I was told, without being seen, not to worry as it was probably just a knock-on effect from chemo last year and the surgery I had in February.  A somewhat cavalier approach I felt seeing as it’s already known that the cancer has spread into my lungs, but I (stupidly) didn't stamp my feet and demand to be seen.

In early April I was in the Chemo Unit for one of my regular three-weekly Herceptin top-ups.  I told them about the breathlessness and, as a result, had a blood test, chest x-ray and CT scan to check that I didn’t have any blood clots (I didn’t). 

Later that month I went to my GP surgery to ask about the breathlessness.  My GP told me that the CT scan, taken three weeks earlier, had shown progression in my lung mets (or, in other words, the lung crap was growing). 

I was furious that the Oncology Dept hadn’t picked up on this progression (I know ‘progression’ sounds good, but in the wacky, wacky world of cancer it is a Very Bad Thing).  I assume this happened because this wasn’t one of the regular, planned CT scans that I have.  But that’s no excuse.  To be told that the cancer was growing three weeks after the scan, and only because I happened to go to my GP, is, at the risk of sounding like a disgruntled retired colonel with a handle-bar moustache, a complete bloody disgrace.  Not to mention scary.

I made an appointment to see the oncologist the following day – and believe me I had to jump through hoops to get that appointment.  He was bloody useless.  No apology, no ‘OK let’s get things moving then’, nothing. He just told me I had to wait until the following week for a full CT scan (to check for spread to other organs) and then a further two weeks (two weeks!) to get the results.  He said it was impossible to speed up the scan and/or results.

A couple of days later I had a routine appointment with the breast surgeon.  I told her the whole sorry story and she said she would make sure I was discussed at the Breast Clinic/Oncology meeting the following day.  After that I had two calls from Oncology (I have never had a phone call from the Oncology Dept before, so colour me cynical).  During the first call the oncologist suggested that I call the CT Dept to ask them to come up with results more quickly (why he couldn’t do that is beyond me) he also mentioned the possibility of going on a drug trial (TDM1).  The second call, half an hour later, was to tell me that the drug trial was closed.

At this stage I was beside myself with fear, frustration and fury.  There was a real danger that my head would explode before I even got the chance to die of cancer.  However, I was very, very lucky to be in the position to be able to go to a Professor of Oncology in London for a private consultation including a CT scan and results in the same day. 

The CT scan revealed that there had been progression in my lungs, hence the breathlessness, but no spread to other organs.  The Prof explained that the trial for TDM1 was only closed temporarily and should be re-opening soon.  He felt I would be a good candidate for the trial and recommended that I see a colleague of his, on the NHS, in Warwick.

The following week I was informed by the London oncologist’s office that the necessary letters had been ‘done’ and I should hear from Warwick shortly.

A week later I still hadn’t heard from Warwick so I contacted the London oncologist’s office again.  This is when I found out that letters being ‘done’ meant dictated, not sent and, in fact, not even typed yet. So it’s not just the NHS that drag their heels.

The following day the letters were sent out (to Warwick, to my GP and to my local oncology dept).  Copies were emailed to me.  They made my jaw drop.  The letters while stating that I would be a good candidate for the trial and correctly detailing my medical history, said that the Prof recommended that, before going to Warwick, I go back and discuss things with my local hospital.  Neither I nor the other-half remember this being mentioned during the consultation.  Also, the letter sent to Warwick, was not asking that an appointment be made for me there, it was really just alerting them to my existence should I contact them.  So I had wasted yet more time waiting for things that weren’t going to happen.

It so happened that, last Thursday, I had an appointment (made some time ago) with the local oncology dept anyway.  So I decided to attend (having first notified them that I was very unhappy with my treatment and wanted to see the oncology boss).  If nothing else it would give me the opportunity to vent my spleen.

The boss was an oily rat bag of the first order.  He squirmed, smarmed and excused his way through the appointment.  I did manage to get one ‘sorry’ out of him – but that took some considerable effort on my part.  He claimed to be best pals with the London oncologist (the London onc having told me that they had met once or twice) and generally, it seemed to me, tried to salve his ego while not putting his hands up to any real failure in his department.

However, he did say that the drug trial was indeed still on and that if I decided to keep my care at Shrewsbury rather than transfer to Warwick he would recommend me.

The other-half and I went home, ranted to each other about the oily rat bag, and then did some serious, pragmatic thinking.  While we’d love to tell the local oncologists to stick it where the sun don’t shine the reality is that to wait for an appointment at Warwick and then have to travel an hour and a half each way for every appointment was not an appealing prospect.  So, warily, I have asked to go ahead with continuing my treatment locally.

I’ve just about finished my tirade now.  Please make sympathetic noises at this point.

Breaking news:  Yesterday I received a call from the local hospital confirming that, subject to tests, I have been allocated a place on the trial starting, hopefully, next month.  There is still a danger I won’t get on the trial and even if I do, no guarantee that it will work.  However, that said, it does (at last) feel like good news.

If you've read all this without slipping into a coma, congratulations, have a banana!  I'll do my best to fix the putting-photos-on-this-blog problem and show you the Beatle pony next time.

Strop central

Hello.  Have you come here looking for some not particularly amusing tales of three-legged cats, errant sisters and dopey other-halves?  Well sod off, you’ve come to the wrong place at the wrong time.  I’ve got a right strop on.

If you’ve been paying attention (and if not do try to keep up) you’ll know that I’ve been complaining about breathlessness and a cough.  Last week, seeing as the idiots health care professionals at the hospital didn’t seem too interested, I went to my GP.  It was there I discovered that the CT scan I had had three weeks earlier, to check for blood clots, had shown that the cancer in my lungs had grown.  The GP assumed that the hospital would have informed me about this.  He assumed wrong.  Since then my GP has been in touch with the hospital and I managed (after much gnashing of teeth) to get an appointment with the oncologist.  The oncologist says I have to have another CT scan and wait for results before he can decide what action to take.  That will take us to the middle of May. If they went any slower they’d be going sodding backwards. 

I am not impressed.  I’m not impressed with waiting, with not being told that the cancer was growing, with struggling to get appointments and when I do get appointments half my notes being missing.  So I hope to be heading to London in the near future to see an oncologist who knows his onions and who can move faster than an arthritic snail.  I will keep you posted.  In the meantime here’s a soothing picture of Wollerton Old Hall which I visited on Sunday, and very nice it was too.

The telephone call of tranquility

If you read yesterday’s account of my trip to the GP (and if not, why not? Don’t you realise that the world revolves around ME?) you’ll know that the consultation didn’t leave me entirely happy. Yes, yes, I got the drugs, but the GP’s demeanour added to my already sky-high anxiety levels, leaving me chewing the carpet, bouncing off the walls and leading the other-half to consider ordering a straight-jacket.

So it was an absolute godsend, later on last night, to speak by ‘phone to someone I’ve ‘met’ on an on-line forum for people with breast cancer. Now I know that ‘meeting’ people on-line has a very bad press. I can’t think why. I’m sure the Nigerian prince I sent a small fortune to a couple of years ago will come good in the end with the promised $1,000,000. But cynicism aside (and yes it is me saying that) last night’s conversation was a lifeline. The woman I spoke to also has secondary breast cancer, has had chemo and is coping extremely well with her very busy life (full-time demanding job, husband, kids, dogs – you know - life). I can’t think of a smart-arse way to finish this paragraph – so I’ll leave it with my sincere thanks to the woman I spoke to who was, quite simply, fantastic in my hour of need.

Today was simply a giddy social whirl, my darlings! I am now a lady who lunches. Firstly we met up with tip-top chums (who patiently listened to me whinge although I'm sure they wanted to set about me with a rancid halibut) and went out for lunch to The Royal Oak, Cardington. God, the portions were huge - and delicious. I'd like to type something snarky (that being my way) but it was lovely.

In the evening we met up with Sister No 1 (back from her extensive hols). It was good to see her but even more so when I realised she was clutching a bottle of duty-free sherry. Then we all trecked off to Sister No 2 for another yummy dinner. The other half and I may now never need to eat again. Wafer thin mint anyone?