Pinktober

We’re only 4 days into October and already I want to go to bed, pull the covers over my head and stay there until November. 

Why the despair?  More fool you for asking.  It’s October or, as it’s known in breast cancer patient circles, Pinktober.  Its ‘official’ title is ‘Breast Cancer Awareness Month’.  Not a bad thing in itself I suppose, although I think everyone is aware of it by now and what we really  need is more research.  What really gets my goat is the stupid, inane and downright insulting crap that appears in the name of ‘awareness’ every sodding year.

This year in addition to the usual mindless pink fluffiness (Tickled Pink? yeah Asda what a brilliant name for a laugh-a-minute disease), we have the tremendously badly thought out and completely undignified ‘show your strap’ campaign from Marks and Spencers (google it if you’re interested, I’m buggered if I’m supplying a link to it).  And far, far worse is the ‘set the tatas free’ nonsense appearing all over Facebook.  To add insult to injury the ‘tatas’ thing doesn’t appear to be linked to any charity or to raise funds at all.  It’s just a tasteless bandwagon jumping meme. 

I won’t go on.  A mega rant is not an interesting read nor does it do my blood pressure any favours.  Anyway my pal Kath puts it a million times better than I ever could. 

Enjoy your October.  I'm off to stick my head in a bucket of lager until it's all over.

Second Hope

So here it is, the exciting news I've been hinting at (with all the delicacy of a drunken hippo) for the past few weeks.

Second Hope is a brand new charity that I'm absolutely chuffed about.  It's the only charity in the UK specifically for people with metastatic breast cancer (also known as advanced, secondary or Stage IV breast cancer).  It aims to raise awareness, provide support, campaign and also fund research.

Please have a look at the Second Hope website where there is loads of information including practical advice, more about the charity's aims, founder, trustees etc  (and even a little bit by me).  

I've mentioned time and again in this blog how isolated and hopeless a diagnosis of metastatic breast cancer can make people feel.  This charity is a real light in the darkness.  

Sadly the founder of Second Hope, Julie Phillips, died on Saturday, missing the launch of her brainchild by just a few days.  This heart-breaking news has rocked the online metastatic breast cancer group of which I'm a member, but we are united in our determination that Second Hope will go from strength to strength and be a lasting and fitting legacy for a remarkable woman.  

I cannot overstate how much the launch of this charity means to me.  Please, please take a look at the website, like the Facebook page and maybe even consider making a donation.

Thank you.

Rainy Monday

Golly it's a cold, rainy day here in Shropshire.  I am resisting the urge to turn the central heating on and am spending a lot of time with Cyril (the three legged monster cat) doing this:

Although I did venture out at 9am (9am!) for a heart test at the local hospital.  This is a regular test I have to check that the chemo isn't wrecking my ticker.  All part of the endless delight of living with cancer.  Things still seem OK on that front, so a bit of relief there and I was smiling despite the pouring rain.

How unlike last Wednesday when, to celebrate the other-half's 50th birthday, we spent a total of three hours in the car. which hasn't got air-conditioning, with temperatures in the early 30s touching 36 degrees at some point (thats 98 degress in old money).  Being a delicate English rose (pauses for scornful laughs)  I don't think I've ever experienced that temperature before.  I was wilting.  Thankfully there were no traffic jams if they're had been I think I would have keeled over.  

Anyway the drive was to Stoneywell, a National Trust arts and crafts style property in Leicestershire.  It was beautiful and well worth the sauna-like trip

Not so beautiful was the new look the other-half had adopted to mark his entry into his 50s:

I had a bit of a creative splurge for the other-half's birthday and produced handmade bunting and a handmade card, both of which were too shoddy to be shown here.  Even more shoddy was the birthday cake I made.  The cake didn't rise particularly well but I soldiered on and iced it and put 50 on the top in stars.  However the icing was quite runny and the 50 kept sliding off down the side of the cake.  Sis no 3 pointed out that this was quite apt as, after the age of 50, life is all downhill anyway.  I think it's fair to stay I won't be appearing in the Great British Bake Off anytime soon.

The other-half had lots of lovely presents but one, from his 5 year old godson, was a stroke of genius as those who know Nev will testify:

Apologies for the very poor photograph.  I bought the other-half a half-decent camera for this birthday so I'm hoping that the quality of photos on this blog will improve dramatically in the near future (but don't hold your breath).

Talking of holding your breath something exciting but secret is going on. I hope to be able to reveal something I think is pretty fantastic in the next few weeks.  So stand by.  Ooh I'm such a tease!

Me again

Just a short note to pester you with the fact that my latest burblings for Vita (an online magazine for the Breast Cancer Care charity) can be read here. 

Not the cheeriest of reads so here, have a free photo of Cyril, the three-legged monster cat, to be going on with:

Now, if you'll excuse me I've got things to do.  I want to finish this excellent book before this excellent film comes on in an hours time.  It's all go go go.

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.

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.

Irritations

Love letters to and from the Inland Revenue

See that picture?  That’s the correspondence I’ve had with the tax office over the last six weeks.  It’s a long and dull story best summed up as they are doing my bloody head in!  I am battling on and think I might be wearing them down as the latest letter from the powers-that-be said, amongst other things, that they were ‘sending me kind thoughts’.  Sweet, but I’d prefer it if they just got my tax right. 

I’ve got a seroma (collection of icky fluid at the operation site).  Maybe don’t click on that link if you’re about to eat.  Too late?  Oops sorry.  I had the fluid drained on Friday by the surgeon but by Friday evening it was back.  I thought I was tremendously brave putting up with it all weekend and called the hospital on Monday morning expecting them to rush me in to mop my brow and drain the gunk.  They were unimpressed.  I have to wait until Wednesday to get it drained again.  Meanwhile I’m walking around with what feels like a small water bed on my chest.  This in turn has put the kibosh on my radiotherapy planning appointment (also scheduled for Wednesday).  I spent all day yesterday (apart from the two hours I spent composing my latest letter to the tax office) trying to phone the radiotherapy department to reschedule my appointment.  The phone rang and rang and rang and rang.  No-one answered all day.

I’m still pathetically tired.  I walked for 10 minutes yesterday, had a major (and embarrassing) coughing fit in the post office then walked 10 minutes home and had to have a lie down. 

I’m persisting with the grotty post-mastectomy exercises as instructed by the physiotherapist.  They hurt and make me even grumpier.

Building work on the kitchen starts on Monday.  There is still So Much To Do Before The Work Can Start.  And Cyril (three-legged monster cat) is not helping much with the packing.

To cap it all I’ve opened a new tub of margarine when we already had an unfinished tub in the fridge.  Argh.  As John Shuttleworth says 'two margarines on the go, it's a nightmare scenario'.  See below for his musical masterpiece:

Medical update

With all the ranting I forgot to update you on my recent surgeon and oncologist appointments.  The surgeon is happy with my progress (the seroma problem is common and nothing to worry about).  Sufficiently clear margins were taken out around the tumour so I don’t have to have more surgery.  The main tumour itself was a bit smaller than expected and the other cancer in the breast found during biopsies a year ago was nowhere to be seen.  The surgeon suspects it was zapped by the chemo.  The oncologist (the one that looks like Smokey Robinson, he’s my new favourite) decided I should have radiotherapy because, although it will not help with secondary cancer, it can reduce the risk of a recurrence of a new cancer in the same area as the first.  So pretty good news all round.  I really shouldn’t be so grumpy, but I am.   

 

I live here

Note proximity of cuppa, biscuit tin, iPad and cat - all life's essentials

My life is still revolving around the sofa.  I’d no idea that having an operation would make me feel so tired.  I’ve read bits and bobs on recovering from a mastectomy and there is every shade of opinion from people who think that, at two weeks on from the op, I should be leaping around like a young and frisky gazelle to others who reckon I’ll be out for the count for up to six months (six months? bugger off). 

Apart from the tiredness all seems to be going well.  I am (as yet) untraumatised by the whole thing and while I’m in a bit of pain it’s not horrendous, nothing like having toothache or, as I can bloody well testify, stubbing your toe by walking into the clothes airer with bare feet.

I’m sorry for the extra dull post but I’ve very little to report (aside from the horror that is walking into the clothes airer with bare feet).  However, during a period of intensive research (which some people might mistakenly call faffing about on the internet) I found the only source of information anyone will ever need.  Click here to find the most useful database* in the universe (click on the dots within the table for pictures/films). 

* I hate the word ‘database’ and am a bit ashamed at myself for having used it.  I also hate ‘pantyhose’, ‘matrix’ and ‘comfy’. 

Snoozing on the sofa

I'm back home, being pampered by the other-half, getting meals on wheels from sis no 1 and more cards, phone calls and flowers than I deserve:

Lovely, lovely, lovely.  Thank you, thank you, thank you!

I had a couple of fantastic handmade cards, one of which was covered in glitter.  The other day Cyril (three-legged monster cat) brushed against the card and was immediately coated in spangles.  Then he went outside to hang out with his rufty-tufty mog-mates.  I was worried that he'd get beaten up for being so flamboyant, but he strutted home (as best a three-legged cat can strut) in fine fettle.  I think perhaps he is a fashion-leader, so now I expect to see the other neighbourhood cats sporting glitter encrusted coats too.  It's the new spring look.

Anyway, I'm home from hospital and and am now officially an amazon.  Admittedly I'm a bit of a delicate amazon at the moment but I'm on the mend and making the most of sofa time before a truck load of hospital appointments next week.

I'll be pestering you again shortly but thought I'd let you know that as I drifted in and out of sleep after returning from the operating theatre (where I'd just lost* a breast) I could hear the other-half droning on and on to the nurse about his backache.  No-one suffers like he does.

*OK, seeing as the departed breast contained the malevolent cocktail sausage of doom perhaps 'lost' isn't the right word.

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.