AWOL

I haven't posted for an age.  I'd like to tell you something scintillating, saying my absence is due to me gadding about with the jet set or my ongoing commitment to the NASA training programme.  But the truth of the matter is I've spent much of the past few weeks feeling like the the other-half looks

And as if feeling grotty wasn't bad enough, the above photo was taken during my last visit to the Christie and shows just how attentive and alert Nev can be during my appointments.

A short break in the whinging though, to tell you the good news.  I had scan results last week and amazingly, after eight cycles of the trial chemo SYD985, there has been a slight shrinkage in the cancer in my lungs.  I was staggered and, obviously, very pleased.   

I hope you made the most of that bit of good news because I'm about to start moaning again.  I do want to try to be honest here and not be some sort of happy clappy falsely cheery cancer blog, so here goes.

Even though I had good results the breathlessness has got worse and worse.  I'm fine if I sit still but any sort of movement makes me completely out of breath.  As you can imagine this makes doing anything, let alone getting out, really difficult.  It's not like I have a wild social life but even so I've lost count of the things I haven't attended due to breathlessness and fatigue.  Thankfully I did manage to get to a recent appointment with the Palliative Care Consultant at my local hospice, who is worth her weight in gold.  She could hear a deterioration in my breathing but thinks the problem might not be a result of the cancer (although it might be chemo damage).  She has referred me to my local hospital's respiratory bods.  I'm currently waiting for an appointment and I really cannot wait.  If there's anything that can be done to ease my poor lungs I'd be extremely grateful.  

Also, if truth be told, I'm pissed off with looking dreadful.  I've got thin hair, no eye lashes, hardly any eye brows and watery eyes.  My appetite has gone west and so I've lost weight and am looking extra haggard.  Ah cancer, the gift that keeps on giving.

In other news my Eddie Redmayne look-a-like doctor at the Christie is moving on to other  film roles research so I'll be seeing someone new in future.  It was nice to wave him off as he gave me good news (the cancer shrinkage).  He was also able to give good news to a fellow SYD985 patient (and pal) who'd seen a significant shrinkage after just two cycles.  So to any Secondary Breast Cancer bods reading, who are HER2 positive,  I'd say the SYD985 trial is well worth considering.

Meanwhile, in spite of everything, life goes on.  And I do appreciate it, honest.  Christmas preparations are underway. The festive twig is decorated and on display (we don't run to the extravagance of a tree at Discombobulated Towers),  Hot Fuzz is on the telly and, hurrah, it's very nearly present time.

I leave you with evidence (as if any were needed) that a three-legged monster cat and a cream sofa are not a good combination.

Happy Christmas.

Snooze envy

Little sod

Look at the three-legged monster cat.  Fast asleep, which is how he spends about 18 hours a day.  I think the lucky blighter is taking the piss.  As, although I have been plagued with fatigue that has frequently had me housebound, sleep eludes me.  Last night was a particular bugger when I was wide awake from 1.30am onwards.  I think the pathetically low dosage steroids I'm on might be to blame.  I'm about to run out of them anyway as the onc wasn't particularly happy at prescribing them, but I begged as I was desperate to have some energy.  Hey ho.  While I'm in bleating mode I'm still struggling with constipation and the breathlessness on any form of exertion, like walking to the kettle, is incapacitating. 

So, that's the bad stuff but I do have some good stuff to report too.

Firstly I had CT scan results last week and again there was no change in the cancer.  Again I was astonished, and very pleased, as the breathlessness led me to believe that things were getting much, much worse.  I'm having more chemo in about 10 days time, so I will rugby tackle the onc to the ground then and stress the importance of trying to get the side effects (I assume) under control.  I say I assume that the breathlessness etc are side effects as I have no-one else to compare notes with.  However, I know a couple of people who are being assessed as to their suitability for the SYD985 trial I'm on, so perhaps I'll have someone to swap stories with soon (although I hope they're not blighted with breathlessness).  I just really hope all this yuckiness isn't my body waving the white flag.  I've now had about 60 cycles of various types of chemo since being diagnosed in early 2012 and I think that's a lot by anyone's standards.

As getting out and about is now very difficult I decided to bite the bullet and get a wheelchair.  This was, like the stair lift I got a few weeks back, a horrible idea in theory but in practice brilliant.  Also, I was extremely lucky in that I've got a rather whizzy wheelchair for free.  Some friends had a virtually unused chair that they no longer needed and they gave it to me for nowt.  Aren't people lovely!

Anyway last Thursday, out of nowhere, I had a good day.  So we quickly loaded up the wheelchair and headed for the hills.  The Stiperstones to be precise, where there's an all terrain track which enables people with disabilities to get out in the lovely Shropshire countryside (yeah, I know I'm biased).  Here's a picture of me pulling a very strange face and being rather windswept but, although appearances might suggest otherwise, enjoying myself.

Wagons roll

I'm hoping for some more good days soon so I can shout wheelchair steering instructions at the other-half and generally be a pain in the arse.  I'm also hoping to go wig shopping as my hair is thinning by the day (although more slowly than on some other chemos).  I usually just wear hats and scarves when bald but thought I might give a wig a try again, hopefully it won't be as sodding uncomfortable as the one I got a few years ago.

Also there was one good thing about last night's insomnia.  I found a hilarious twitter account (in fact I woke the other-half up by laughing so much).  Here's the link but don't click if you don't like swearing, rudeness, black humour and fluffy bunnies.  Don't say I didn't warn you.



 

Bugs

January.  Cor.  It went on a bit, didn't it?  I started and ended the month with the lurgy.  Not a serious lurgy, just the common or garden lurgy that everyone gets but even so.  What with that and the usual chemo stuff it seems like I spent most of January feeling moderately crap.  This is, of course, light weight crap compared to what lots of other people are going through but I'm not going to let something like that stop me from whinging.

And the weather.  The sodding, sodding weather.  Grey, miserable, windy, rainy.  Precious few of those sunny, chilly, crisp days that make winter bearable, even enjoyable.  In fact I think we've only had one frost this winter.  Which is probably why bugs, of all varieties, abound.  I'm full of germs, the garden is full of slugs and the cat is full of fleas.  Here he is, like me, feeling sulky.

I had my latest CT results toward the end of January.  Dear God I was scared.  I'm always frightened going for results but this was worse than usual.  I suppose it's because I know I'm running out of treatments.  There are a couple of chemos left for me to try but once all possibilities are exhausted there is nothing left but palliative care.  Of course, I knew this all along since day one of being diagnosed with metastatic breast cancer, but as the time comes nearer it all gets scarier and scarier.  My pal Kath has put it a million times better than I ever could.  Read what she has to say here. 

Anyway, this time I was lucky.  The CT showed stable disease.  Also, more good news, the medical bods are pretty sure that the stabbing pains I get in my chest and side are nerve related (from the surgery).  However, as I have now had 54 cycles of chemo the time has come, according to my onc, to give the chemo a rest and try a hormonal treatment, exemestane.   While I will be delighted to have a break from chemo, cannulas and all the associated palaver, I am a bit concerned about stopping a treatment that seems to be working.  I've checked this with the onc but she's definite that I need a rest and I assume she knows her onions.  I'll have another scan in three months time to see how things are going.

Although this has been a bit of a mega-moan January hasn't been all doom and gloom.  There's been the trip to see the other-half's nephew in panto (oh yes there has), my hair finally getting long enough to discard hats and scarves and, above all, sister no 2's latest foray into crochet.  A Death Star.  I kid you not.

 

The Lurgy

I’m starting the New Year in the traditional way, by feeling like a bag of bollocks.  I’ve been fighting off the lurgy for a few days but overnight my immune system waved the white flag and I’ve woken up with a streaming nose, hacking cough and total and utter grumpiness.  

To make matters worse I think they’ve changed the recipe for Lemsip.  I used to love Lemsip.  It almost made having a cold worthwhile but now, due to an ingredient change, or the state of my chemo-altered taste buds, it tastes like a menthol/antiseptic cocktail that’s been mixed in a disintegrating hot water bottle, only worse.

The lurgy does have some consolations though.  I’ve got up early (to spare the other-half having to listen to me cough) and draped myself on the sofa while watching the 1953 version of The War of the Worlds on the telly and, best of all, am snuggled up under a really wonderful present.  This picture doesn’t do it justice, but look what a friend made me, a completely gorgeous quilt.  

 

It’s in exactly the right colours for my sitting room, so even though I’m poorly, I'm colour co-ordinated.  I'm afraid I disgraced myself a little bit and came over all emotional when I was given the quilt but, honestly, what a beautiful gift.  

Talking of wonderful things.  Christmas.  We had a real slap-up, no holds barred, rip-roaring Christmas.  I stayed in a very swanky house with lots of family and friends, including all three of my sisters.  It was a bit of a Downtown Abbey experience (only we were all very good and no-one behaved like arch-bitch Lady Mary).  Just look at where we had our Christmas dinner. 

Yes, it's a wonky picture, but alcohol had been taken

At the risk of sounding as my dad used to say, as soppy as a sack load of bottoms, it was a truly lovely Christmas.  Also, I've now got ideas above my station and won't step outside the front door unless I'm wearing a tiara. 

We took the Christmas-cake-that-nearly-caused-a-divorce-in-the-making with us.  Amazingly most of it was eaten, probably due to the industrial quantities of sherry and brandy it contained.  When it came to cake decoration we decided to go with the true meaning of Christmas and had an Ice Road Truckers theme.  And here it is (another poor photo but you get the gist)

We are now taking orders for next Christmas.  Don't all rush at once.

Since Christmas, normality has returned.  I've come back to a dose of chemo with the usual temperature spike and trip to hospital the following day (New Years Eve).  All was OK and I was released after a thorough checking over, although I could've done without the four attempts to get a cannula in to administer IV antibiotics. 

I've also had a CT scan and am waiting three weeks for the results, which is as usual, scary, scary, scary.  

But for now I'm concentrating on lying on the sofa sniffling.  If anyone wants to buy shares in a tissue factory now's the time.

(Apologies if this blog post is displaying a variety of font sizes, I think my computer has the lurgy too).

Cheers and jeers

Well what an up and down couple of weeks it's been.

The biggest jeer should be reserved for Alistair Burt, a Conservative Health Minister, who scuppered the passing of a law which would have seen off-patent drugs (for conditions including cancer) made available to the National Health Service (NHS) at low prices.  Not only did Mr Burt filibuster the proposed legislation he also accused his opponents of "shroud waving".  Classy.  You can read more about it by clicking here or just take my word for it that the man is a total and utter shit.

The other crappy thing that happened was of a more personal nature.  I discovered a lump on my chest.  I only had a week or so to wait for the results of my recent CT scan so I knew I'd get answers fairly quickly but it certainly made the days approaching my oncology appointment even more stressful than usual.  Given the appearance of this lump I was convinced that my current chemo, Eribulin, wasn't working.  So imagine my surprise and delight when I was told that the cancer is currently stable.  The oncologist also had a good poke around my chest and said that she thought the lump was bone.  She's getting the radiologist to double check my scan but is fairly confident that the lump is nothing to worry about.  So the plan is now for me to continue on Eribulin and have another CT scan in January.  What a relief. 

Honestly, it was like the sun breaking through the cloud

There was more good news.  You may remember that a while back I was on a drug trial for a chemo called TDM1 (trade name Kadcyla).  This drug worked really well for me for 18 months with very limited side effects.  There has been a lot of hoo-ha about kadcyla due to its cost and there was a very real threat that it would be removed from the Cancer Drugs Fund (CDF) meaning that it wouldn't be available to NHS patients.  However, a decision has been made to keep kadcyla on the CDF. Hallelujah.

Also on the plus side I have been diverted by having all three sisters in the UK and plaguing spending time with me. 

And I've been a right old culture vulture.  On the day before seeing my oncologist I took my mind off things by leaving the sticks and heading to London to see the British Museum's exhibition on the Celts.  Then, just a few days later, I went to Birmingham Museum and Art Gallery to check out the pre-Raphaelites and the Staffordshire Hoard.  While I was in Birmingham I also took the opportunity to visit the new shopping centre but, you will be relieved to hear, I didn't let this sully my pure and academic soul.  Please ignore any malicious rumours that I had to be dragged away sobbing from the cashmere jumpers in John Lewis.

Talking of shopping, it's not long until Christmas you know.  Don't hate me.  I'm trying to help.  You could order some beautiful cards from Ebay.   All proceeds will go to Second Hope (the new and only UK charity specifically for people with metastatic breast cancer).  Go on, you know you want to.


 

Thwarted and sorted

This is what proper sewing type bloggers do, isn't it?  Put pictures of their latest creations on their blogs.  That is the only way in which I am in anyway similar to those bloggers.  Big sigh.  

Remember me saying I was attempting to make my first ever dress and doubting that I'd get further than this stage?

Well I did.  With bullying help and motivation from sis no 3, I tackled darts, battled with interfacing and did things with a zip I never thought possible.  I was pretty chuffed with myself and the finished item.  Then I tried it on.  It was too small to accommodate my enormous arse.  To add insult to injury there wasn't enough fabric in the seams to let it out.  There was wailing and gnashing of teeth, followed by some internet shopping to make up for the trauma.  I actually quite enjoyed the sewing process but I haven't quite got the heart to attempt another, much wider, dress just yet.

On a more successful note the other-half has decorated our sitting room.  The finished result is fine but there were moments of argh during the process, including finding some damp (which we thought we had, expensively, eradicated some time ago).  As you can see, Cyril (the three-legged monster cat) 'helped' when we were drying out the damp.

In health news the erratic side-effects of my current chemo, capecitabine, continue.  Some days I feel fine, others really tired and others unable to stray too far from the bathroom.  I whinge but, so far, the side-effects have been bearable and as long as the chemo continues to work I'm happy with the treatment.

I'm not so happy though with the chemo nurse who booked my next two dates for attending the Chemo Unit to collect my drugs (this happens every three weeks to fit in with the chemo cycles).  I, stupidly, just accepted the dates she offered without double checking.  I realised today that the nurse had mistakenly booked my appointments at four weekly intervals instead of three weekly.  To make matters worse I had used the exisiting dates to work out when to book a couple of holidays.  So now everthing has gone pear-shaped (much like me).  The next appointment has been rearranged to, just about, fit in with my plans and taking the drugs at the right time, but the appointment after that could cause problems.  The Chemo Unit assured me today that they'd sort it all out when I go in next week.  Here's hoping!

All this is very minor stuff though compared to what some are going through.  On the online forum, which is my life line, a number of women have died over the past couple of weeks.  Of course, this is going to happen on a forum for people with metatstatic cancer but it's tough.  One of the women who died recently, Jo, (at just 32 years of age) had an excellent blog which brings home the impact of this vile disease.

Itchy Xmas

A whinge to start off with, then I'll put my festive trousers on.

I'm two weeks into my new chemo combo (capecitabine and lapatinib).  I have been fortunate enough not to have had, as yet, any of the yuckier possible side effects (sickness, explosive visits to the loo etc) but I am pretty tired a lot of the time, am incredibly itchy all over and my nose and chin are covered in acne.  I am not impressed.  I've now got ointment, antibiotics and antihistamines so hopefully the skin rebellion will calm down soon.  Weirdly it's the acne that I hate most.  Thinking back, I hated going bald (on a previous chemo) and I hated losing a breast (the mastectomy) but I hate, hate, HATE having a face full of spots.  I suppose my attitude to a relatively minor side effect means I'm either completely barking or a deep and complex person.  Big prizes for the correct answer.

Miserable sods, like myself, who'd like more moaning can see my latest blog for an online breast cancer magazine by clicking here.  For happier souls let's move on to festive frolics.

Something very strange has happened at Discombobulated Towers.  Rather alarmingly the other-half seems to have turned into Kirstie Allsop.

First we had the homemade Christmas wreath

The other half looking uncharacteristically bashful

and here it is in pride of place

So far so good.  But then things started getting a bit bizarre.  He made me a Christmas card.  Aw, touching, I hear you cry.  Hold your horses!  First a little background ... A few weeks ago the other half and I were oohing and ahhing over a cute mouse who was helping itself to food from the bird table and then scurrying back to the safety of it's home (we guessed) under the garden shed.  He saw it a few times after that and commented on what a large, well fed mouse it appeared to be.  Gradually the realisation dawned that the cute little mouse was in fact a big, scary rat.  I say scary because even Cyril (the three-legged monster cat) ran away from it.  Anyway, the other morning I came down to find this Christmas card waiting for me

The other-half, age 49 and a half, had stayed up to two in the morning making this thing of wonder.  It says Happy Ratamas, is partially made out of an old sock and has an illuminated nose.  It also has a lovely stand (not shown) made out of the middle of loo roll.  Truly I am blessed.

I returned the favour and made him a card too.  However, I'm not showing mine because a) it's nowhere near as good as the other half's and b) it features a misplaced apostrophe (oh the shame!)

All of which brings us on to the piece de resistance.  Last Saturday saw the other-half's family Christmas party.  The brief was to wear something Christmassy, cue lots of festive jumpers etc.  The other-half decided to do something different.  He spent a whole afternoon constructing a hat made out of brussel sprouts, fairy lights and a light-up tree.  It involved a great deal of swearing, a lot of electrical tape and made the whole house reek of festering veg.  The completed article, as well as being something to behold, also weighed about two tons.  The other-half's neck is now two inches shorter.  Anyway without further to do, here it is, and a Happy Christmas to all!

Stomach in knots

The knot garden at Sudeley Castle (review: grounds lovely, museum um a bit of on the scatty and smelly side)

Oh my giddy aunt, it's that time again.  I've had a CT scan and am now in a state of scaniexty, waiting to see the oncologist next week for the results.  This is pretty much the lot of someone with secondary breast cancer - scan, treat, repeat.  (I nicked that phrase from the excellent Metavivor website just in case you thought I suddenly come over all sharp and snappy.  Don't worry, no danger of that happening anytime soon).  Anyway, as I said, it's scan, treat, repeat that is, of course, until the 'treat' options run out.  I've written before about the horribleness of waiting for results, here, for example.  However, I've found someone who sums it up a million times better than I ever could.  If you want to see what I'm talking about have a look at this short film from the brilliant Katherine O'Brien, author of the I hate breast cancer blog.

While I'm in my default mode of moan, moan, moan.  Jenni Bloody Murray.  Yes, again.  If you don't know what I'm talking about this should explain it or have a look at my latest post for Vita (the online breast cancer charity magazine for a more restrained version).  Amazingly, given her views, Jenni Bloody Murray is listed as a 'celebrity supporter' by a breast cancer charity called Breast Cancer Campaign.  Click here for the evidence.  I contacted the charity to ask why she still appears on their website after she'd expressed sentiments which, I think, are pretty offensive to anyone with secondary breast cancer.  I got a predictable 'we-don't-agree-with-her-but-she's-entitled-to-her-own-opinion' response.  So what now?  Do I 'let it go' and move on or stand my ground and argue the toss (probably to no avail).  At the moment I'm pursuing a third option, which is to do absolutely nothing other than seethe inwardly in a self-destructive and unhealthy fashion; a course of action that I feel is much underrated and one I'm very good at.  

And, lest after all this whinging, anyone feels the urge to counsel me to 'be positive' may I please draw your attention to this post from the Telling Knots blog which says it all.  I should point out that I'm lucky enough not to be surrounded by the type of people who come out with the positivity stuff and have had had very few encounters where I've been admonished for not being a little ray of sunshine.  So no-one reading this who knows me need feel guilty (or angry)!

It's not all scanixety and seething here at Discombobulated Towers though.  My broken wrist is on the mend and  I've been to the Cotswolds on a sunny springtime day:

While in the Cotswolds I bought a guidebook which contained a typo that gave me hours of amusement.  See below. 

Look, I've never claimed to be sophisticated

Finally, in an effort to cheer myself up this morning, I went internet shopping and ordered a pair of shiny bright yellow sandals.  So place your bets as to what gets me first - cancer or the fashion police.

Hot stuff

Picture from here

I started on the drug trial, TDM1, last week.  As it's a trial I had special treatment in the chemo unit.  There was a lot of attention, questioning and watchfulness from an assortment of nurses at regular intervals during the infusion.  Of course this is a Good Thing but, being an unreasonable git, I still found it annoying as it interrupted the intensive research I like to carry out while I'm on the unit.  That 'research' being the cover-to-cover reading of the type of celebrity gossip magazine I'm too snooty to buy but will happily consume in private if given the opportunity.  It also meant I had to be crafty about discarding the boiled sweet wrappers from the communal sweetie jar.  I think patients are meant to have one or two sweets not, like me, chomp their way through a hundred weight of the things and then come out with a sandpaper tongue, a major sugar rush and wonder why the NHS is short of money. 

Anyway, part of the irritating  info from the nurses involved possible side effects.  I did pay attention but have to admit I was thinking 'yeah, yeah, whatevs' as warnings were given, after all this chemo is known to have less side-effects than many others. 

It wasn't until a couple of days later when I stood simultaneously sweating and shaking in the supermarket that I wondered if the ice-cold/clammy combo was entirely normal.  There followed two days of grotty bed-bound  flu-like symptoms including an iffy temperature, a pounding head and everything aching.  

Fingers crossed that the cancer cells are feeling even worse than I did.

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.

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.

Discombobulation

Yeah, I know I'm using 'discombobulated' too much. But it's one of my favourite words and it describes how I feel, having recently gone from being an apparently healthy bunny to receiving a diagnosis of breast cancer with spread to my lungs. Actually 'mightily pissed off and frightened' sums it up too but that doesn't sound as good.

My second favourite word is espalier but that doesn't fit into my current situation at all. Unless there's some vile treatment (on top of all the other vile sounding cancer treatments) which involves being pegged out flat against a garden wall. I'll let you know if this turns out to be the case.

So the master plan is for me to use this blog to update people on how things are going with me - that way people can find out for themselves as and when they please, rather than have me send moany emails. Acutally a select few will still be receiving the moany emails. So maybe it would be more truthful to say that this blog will just give me another outlet to whinge. Of course it may be that I quickly lose interest in posting (or feel too grotty to bother). Who knows? I bet the anticipation is killing you.