Kitchen capers

        Picture from here.  Artistic embellishment by moi

The building, re-wiring, decorating etc at Discombobulated Towers is finally finished.  Sis no 1 and her cat, Tuppence (the ginger ninja) can breathe a sigh of relief as I, the other-half and the three-legged monster cat have returned home after a prolonged (and much appreciated) stay at her house.

Stupidly we didn’t take any pictures of the old kitchen before work started but take it from me it was a dark, dank dungeon of a place.  But now?  Ta dah!

Cooker is cream, washer machine is white - Argh!

Flowers from the builder (probably included in his bill)

And, just for my mate M, look our co-produced artwork once again has pride of place (don’t worry I won’t tell anyone about how you bullied me into creating this masterpiece).

Please don't go thinking this refurb was a painless experience.  It took twice as long (or more) than we expected, went over budget and involved a dust up with a 'kitchen fitter' who could no more fit a kitchen than I could crochet a teapot. 

I always used to sneer, as I watched Grand Designs, at people who almost always spent loads more than they intended on their dream homes, took months and months longer than expected to complete building and ended up close to a nervous breakdown.  Now bitter experience has taught me better and I will watch the programme wearing my humble trousers in future.

However, all the trauma is behind us now and I can bask in the fantastic-ness of the new kitchen - it's not for cooking in you understand, just for looking at.  

Our small garden has taken a pounding.  It was used by the builders for storage space.  So while it used to look like this:

It now looks like this:

Which means that when Cyril went out for the first time since our return he couldn't resist rolling around in the sandy red grot and ended up looking like this:

I should at this point mention that I've also got new sofas.  One is cream coloured.  I sense a difficult evening ahead.

Normal non-refurb whinging will be resumed tomorrow when I start on chemo again - the drug trial TDM1.  Please keep everything crossed that this is the chemo that zaps the buggers!

Arse biscuits!

Picture from here

Today’s news can best be summed up by the immortal Father Jack.  Arse Biscuits!  If you’d like further details read on. 

All my test results have come through. 

Unfortunately it looks extremely likely that the cancer is in my bones (as well as, as I already knew, in my lungs).  The bone scan revealed two suspicious areas on my ribs (on both sides of my ribcage).  I've been getting pain in those particular areas, but was hoping it was due to excessive* hoovering.  There is a very small area of doubt about this (the cancer, not the hoovering) as the CT scan doesn't show anything on the ribs.  However CTs are better at showing stuff in soft tissue rather than bones, so it'd be daft to pin any hopes on that.  The results only came through today.  The research nurse (my new best friend) rang and told me (as requested by me).  Mr Oily (the boss oncologist) is off today but she will show him the scans tomorrow.

 
On the plus side my heart is OK and my brain is clear. Also on the plus side, the spread to my bones does not stop me going ahead with the trial drug.  In fact I start on Tuesday.  Here's hoping it packs a punch and bops the buggers on the bum.

In the meantime I am drowning my sorrows in Chablis, and I have to say it’s working a treat.  However, I may not be a delight to be around tomorrow morning.

There is no escape from the kitchen refurb report, but I’ll spare you until next time.

*when I say ‘excessive’ hoovering, I mean, of course, any hoovering.

Testing times

Since I last posted I have been zipping to and from the hospital for tests.  These tests (blood, urine, heart, bones, and a full CT scan) are mostly to determine a base line before I can start on the drug trial, although if the heart tests reveal anything iffy I won’t be allowed to start at all.

I was amazed that all the tests were arranged so quickly and was congratulating myself on having been a feisty patient who had galvanized my local hospital.  Silly me.  It turns out that the drug company behind the trial is paying for the tests to be carried out, hence the hospital’s sudden ability to move faster than a snail’s pace.  I might’ve guessed.

The tests themselves have been quite exciting.  Sis no 2 kindly said she’d take me to hospital on Monday for the blood and heart tests.  The time we arranged for her to pick me up came and went and I was left waiting forlornly by the front door like a forgotten pint of milk.  I called her and found that she had got the time of the appointment wrong and wouldn’t get to me until after I was supposed to be at the hospital.  I then had five minutes of panic while I rang for a taxi and called the hospital to warn them I’d be late.  To be fair the hospital was very accommodating and everything worked out fine. 

Well fine-ish.  As a result of all the chemo my veins are not what they were and there was a lot of poking about with needles in order to get all the blood needed for the various tests.  Things then got worse.  I was bitching about my sister to the woman carrying out the heart test when there was a knock on the door.  I was informed that my daughter was waiting outside for me.  It was, in fact, my sister and she is 12 years older than me!  This was rapidly turning into a very bad day.  However Sis no 2 and her sainted husband then treated me to lunch and took me home.  So I polished my halo and decided to forgive her.  I’m like that. 

Yesterday I had the bone scan.  This involved being injected with something radioactive (only two attempts to get the needle in this time, yay).  And yes I was weird enough to check to see if my wee glowed afterwards and no, it didn’t.

A scary thing about these tests is, of course, the possibility that they find cancer elsewhere.  The most common places for breast cancer to spread are the lungs (got the T shirt for that one), bones, liver and brain.  When I had the bone scan I had to have a second scan as the hospital bods spotted something on my ribs during the initial scan.  They did say that the something they spotted was probably just damage from surgery but I’m not going to let reassurance like that stop me from worrying.  Next week I have a CT scan which includes my head so I can start worrying about what is going on in my brain too.  No sarky comments from you lot thanks.

Anyway, if all the tests are OK I will be starting on the drug trial on 11^th June.  Fingers crossed.

Stay tuned for next time when I will tell you all about the never-ending saga of the kitchen refurbishment.  Can you bear the excitement?  In the meantime have a soothing picture of Cyril, the three-legged monster cat, looking particularly relaxed.

Mop tops and cack-hands

Pony with a Beatles hair do, don't you think?

As threatened in my last post here's the photo of a pony with a Beatles hair cut.  His name is Little Ted (he belongs to my neighbour) but I think Ringo would be better.

Now for another photo.  Prepared to be stunned.  Sis no 2 arranged for us both to go to a crochet class at a local vintage shop.  I'd really like to be one of those people (like my niece) who can take a discarded bit of material and an old crisp packet and turn them into a ball gown before you can say reverse slip stitch (whatever that is), but sadly I have no crafting ability whatsoever.  I'm sure I must have tried the teacher's patience though she didn't show it.  Well, she did say I was cack-handed, but that's just plain accurate so you can't really blame her.  Anyway here is the photo of the result of two and half hours labour (and I had a lot of help).

.

You're impressed aren't you?

I went back to the hospital today to sign on the dotted line, giving my consent to going on the drug trial.  Now I have to wait for a bone scan, CT scan and ECG before getting the go ahead.  Watch this space.

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.

The sandwich bandit

The other-half, Cyril (three-legged monster cat) and I have now been staying with sis no 1 for about six weeks as building work takes place back at Discombobulated Towers.  We are very grateful for this place of refuge but quite frankly it’s amazing we haven’t been evicted due to Cyril’s behaviour.  As well as intermittently bullying my sister’s cat, Tuppence, commandeering the best seats in the living room and demanding his share of the breakfast bacon, he has now taken up thievery.  Yesterday he got through a plastic bag and some cling film wrap to have a good nibble of my sister’s ham sandwich. As you can see from the picture below he is consumed with remorse and sleepless nights over the whole incident.

Still wearing the bandit mask too

Meanwhile poor Tuppence has resorted to befriending the vacuum cleaner.

The end is in sight with the building work.  On the plus side the new room looks fantastic on the downside the kitchen fitter turned out to be completely fucking useless.  Sorry, but there really is no other way to put it.  I wouldn’t trust him with a lego set.  Anyway the work is being redone but, of course, this is yet another delay.

I’m also waiting to hear from the oncologist in Warwick.  I want to give the chap a chance but I will start chasing next week.  I’d really like to be on something to try to combat the buggers in my lungs.  I have started another hormone therapy, Letrozole (replaces tamoxifen in trying to block the oestrogen which my type of cancer loves).  It seems to be causing massive hot flushes (a small price to pay) which have even resulted to me standing around in the garden at night, flapping my dressing gown around like some kind of giant albino vampire bat.  

Yes, I know it's a crap photo.  But would you really want more detail?

We are family

Picture from here

Today, while I reclined not particularly gracefully on my sister’s sofa, the other-half’s family rolled their sleeves up and cleaned my filthy house.  Gawd bless their cotton socks!  My house is never exactly spotless at the best of times but all the recent building work has resulted in the entire place being knee deep in dust, debris and disgustingness.  So Da Family descended and blitzed Discombobulated Towers.  One of my brother-in-laws manfully cleaned windows, windows that haven’t been cleaned since I don’t when.  Give that man a coconut.  My sisters too have been in on the act, carting boxes of pictures and knick-knacks (I don’t do minimalism) from my place to clean them cleaner than they’ve ever been before (as well as all the ferrying me around for radiotherapy appointments).  I am a lucky duck, albeit a bit of a lazy one.   Thanks to all!  

As I wrote in my previous post I had a bit of a bombshell recently, not only discovering that the cancer in my lungs has grown but also that the change had been ignored by my local hospital.  I still can’t go into the full details of this story without a) boring you to tears and b) sending my blood pressure through the roof.  Suffice it to say that I’ll be sending in a formal complaint to the hospital’s chief executive.  Anyway, as I no longer have faith in the local oncology bods, and would like some action taken regarding my health before hell freezes over, I have been to see an oncologist in London.  He was very helpful and thinks I might be able to go on a trial for a new chemo drug called TDM1*.  I hope to hear from a hospital in Warwick this week with further news.  Fingers crossed.  If this doesn’t work out I can always go back to see the chap in London. By the way, after a long cold winter, it was a gorgeous day in London so, in between medical appointments, we window-shopped in Marylebone High Street and mooched around Regent’s Park admiring the blossom.

* Apologies for linking to the Daily Wail for an explanation of TDM1 but it includes a quote from Prof Ellis, the chap I saw in London. That's my excuse.  But I still feel dirty.

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 duck of doom

Meet Cyril the three-legged monster cat's arch enemy.  

He does look a little bit menacing I suppose

As mentioned previously, we are currently staying at my sister’s house while the building work back at Discombobulated Towers goes on and on and on (more on this later).  This duck sits under the chair in the hall of my sister’s house and Cyril is terrified of it.  Don’t ask me why.  I never said he was very bright.  Anyway this fear at least gives my sister’s cat, Tuppence, a safe spot to sit where Cyril will not dare to attack.

Oooh ducky, please don't let him get me

I just googled ‘fear of ducks’ to see if it has a specific name.  Weirdly I can only find a name of the fear of being watched by a duck.  The world is strange.

The building work is progressing but has been delayed by the discovery of a lack of foundations, dodgy electrics and The Thorny Issue of The Cat Flap.  The new kitchen will be twice the size of the old one but still not exactly the biggest room in the world.  So finding space for cupboards, french windows and a cat flap has been problematic.  The builder, who has no sense of priorities felt that cupboards and doors were more important than cat access.  After we explained the importance of all things Cyril the builder sketched a variety of options on the kitchen wall and we have gone for the cat tunnel:

Under construction

The electricians have offered to put a light in the tunnel.  I feel that they are not treating this matter as seriously as they ought.

To change the subject to my favourite thing, me, me, me I am now two thirds through radiotherapy.  Just one more week to go.  Here's a picture of the machine that does the zapping.  

All I have to do is lie still and do nothing - something I'm very good at. 

Cattiness

The planets must be curiously aligned, or it’s the dawning of the age of aquarius or something, in other words all three of my sisters are once again in Shropshire.  While the sister-glut means that I’ve been getting yummy grub and have been ferried about all over the place, there are also darker moments.  For example, I have been heartlessly abandoned at the hospital after a radiotherapy appointment with some flimsy excuse about mobile reception.  This abandonment forced me on to a bus (oh the horror).  To add insult to injury I’ve also been told that my hair is like a doormat.  How I suffer.  Would anyone like to adopt me?

I’m still at my sister’s house as the building work at my place continues.  Fingers crossed I might get a kitchen roof this week.  Cyril and my sister’s cat, Tuppence, are slowly learning to tolerate each other.  See below for a united approach to Squirrel Watch.

Let's get 'im!

And, finally, if you’re sick to death of cat photos you’re in the wrong place.  I went to Shropshire Cat Rescue again today and look what was there. 

Want one, want one, want one!

Laurie

Have I ever mentioned that having secondary breast cancer (SBC) is a right bag of bollocks?  Well it is.  Look, I’m not denying that some good stuff has come out of it:  Early retirement from work – big tick, no longer worrying about who’ll look after me in my old age – big tick, people being extra nice to me – very big tick.  However, the bottom line is that sooner or later, given a lack of out-of-control double-decker buses or rogue elephants, cancer will be the thing that kills me.  And please, please don’t say ‘oh well, any of us could die at any time’ or I will have to set about you with a rancid kipper and a tray of used cat litter. 

And of course it’s the same for all the other people with SBC who I’ve met (virtually and/or in real life) via Breast Cancer Care’s forum and a Facebook group specifically for people with secondaries.  Already this year some members of the Facebook group have died and, while no death is any more tragic than any other, I’ve been particularly saddened by the loss of Laurie.  I won’t be able to attend her funeral today as I’ll be back in the radiotherapy room, but I’ll be thinking of her, her husband and children.

Fourteen months ago when I was diagnosed with secondary breast cancer I was devastated, terrified and also mightily pissed off.  I turned to Breast Cancer Care’s online forum as an outlet for my shock and fear.  Luckily for me Laurie was an active member and, right from the start, she gave me the most incredibly caring, sensible and funny support.  Her unique mixture of wit, realism and kindness was instrumental in helping me get back on my feet and start living my life again (up until that point I had been trapped in a fog of fear, sherry and dreary daytime tv).  Laurie not only responded to my posts on the forum but also took the time to email and phone me.  She did all this even though she had a busy life and, of course, worries of her own. 

And I am just one of the people she helped.  The comments on UK and American forums and also the Facebook group following Laurie’s death show that she made an impact on many, many people.  If you’d like to see more of her, she made a short film last year which can be seen here.    

So I’ll be thinking of her and her family this afternoon while I’m being zapped at my radiotherapy appointment and will try to take a leaf out of her book by trying not to moan about the hand I’ve been dealt, making the most of life but also swearing my head off when the going gets tough.

Cyril's squirrels and my niggles

Cyril (three-legged monster cat) is enjoying our stay at sis no 1’s (while the building work continues back at Discombobulated Towers).  His war with Tuppence (my sister’s cat) keeps him fairly busy. He now no longer has the upper paw as he has received a few well-deserved cuffs to the head courtesy of the ginger ninja.  And as if this wasn’t exciting enough he has also found a new hobby.  Squirrel watching.

That looks yummy

On the health front I had my first radiotherapy session today.  One down, fourteen to go.  Nothing exciting to report yet but obviously it’s early days.

Since the mastectomy (at the end of February) I’ve been getting out of breath every time I go up the stairs or have to go anywhere even slightly up hill (I’d never noticed how much up-hill-ness there is in  Shrewsbury before, but blimey I’m well aware now).  I’ve also got an annoying dry cough.  I reported all this to the medical bods last week when I went to hospital for a herceptin top-up.  I was given a blood test, an x-ray and a CT scan to make sure I didn’t have a blood clot (I didn’t).  I have to wait until later this month for another fuller CT scan to see if that reveals what’s going on.  I veer between thinking it’s nothing to worry about to being convinced all sorts of horrors are going on in my insides.  My outsides aren’t too wonderful either – my hair is still curling like crazy.  I thought ‘chemo curl’ was supposed to calm down after a couple of months.  Not for me though.  Still to be honest I’m just grateful to have hair even if I do end up looking like Art Garfunkel.

Me or Art?  (Picture from here)

The big question

Sis no 2 has just returned from Australia bearing gifts (see above).  I’d never had a Tim Tam before but understood that they are similar to the mighty Penguin.  In fact there seems to be some internet debate about which is the best.  So, purely in the name of scientific research, I have tried them out.  It is my unpatriotic duty to announce that Tim Tams win hands down.  They are Penguiny but also with a hint of Crunchie Bar.  A marriage made in heaven (or New South Wales according to the packet).

Anyway I’m soothing my soul with Tim Tams while the building work continues.  My uninhabitable house currently looks like this:

I shamelessly (and rather cheaply) ‘let slip’ to the builders that I’ve got cancer.  My not very subtle subtext being ‘so please do the work extra quickly and extra well’.  My cheek has been rewarded as now, every time I go to see the work in progress, I get a hug from the chief builder.  As a result, I am now about to tour the building sites of Shrewsbury, pulling my poorly face, in search of sympathetic cuddles from all and sundry.