Thursday, 21 July 2016

Getting Ourselves a Strategy ~ Jackie

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I used to think that resilience was in small part developed over time, in the, 'What doesn’t kill you makes you stronger' school of hard knocks, and in huge part, hereditary. Some people are born with the ability to head-butt the knocks out of their way aren't they? And some people, well, they find it harder.

I've always considered myself quite lucky to have a fairly hard head. People would comment that I was strong, resilient, positive and I just thanked them kindly and thought that a few of life's little boulders had served me well and the rest, well it was just how I was made.

I've changed my mind somewhat.

A year of Tamoxifen, and it was playing games with my body. The result was that I had a hysterectomy and oophorectomy (doesn’t that sound like an enormous kick up the backside?) but for the uninitiated, it's when your ovaries are also removed. I suspect that many people reading this will already know that.

I was ready for this hysterectomy. Hell, I'd had cancer! This hysterectomy would be a walk in the park. There was a 50% chance the surgery would be keyhole. I'd find out whether it was this, or the more invasive stomach incision, after the op. Frankly, I was knackered and I crossed my little fingers that keyhole surgery would be possible and saw the operation as my chance for a bit of a rest. I woke to the wonderful news that it had indeed been keyhole and thus looked forward to four weeks of reduced work and increased reading. I admit, I was a little giddy at the prospect.

The surgeon and I had discussed hormones. With chemo and Tamoxifen in my back pocket, the hormone effect shouldn't be too difficult to navigate; my body was used to it. It had done the premature menopause thing through my treatment - albeit a 'fake' menopause -  and thus this would all be easy-peasy for a body used to incapacitated oestrogen.

So I wasn't expecting the volcanic effect on my hormones.

I can safely say that through all the good, bad and ugly stages of my life, I have never been so badly affected by hormones. I have never felt so physically and emotionally down, so helpless, so desperate.

And so shocked. I really hadn't seen this coming.

I can only equate it to living in a perpetual out-of-body experience. My brain was telling me that it was being ridiculous: this wasn't real, no way did I feel like this, hormones were entirely to blame. And yet my brain was also behaving as if it was very, very real, making me cry, question everything, hate myself and fear stepping out of the house. It felt so real, I felt so desperate, it was so unusual, it was quite terrifying.

But please stay with me, because it gets better.
The six weeks post operation taught me something about resilience. It isn't simply about how hard your head is, everybody gets a curve ball now and again which hits them where it hurts. What I learnt from this almost surreal period in my life was that more than a God-given hard head, we need a strategy.

This was mine:


1. The Mirror
In the early days of cancer, I used to look in the mirror and – please excuse me for a moment because I'm not someone who swears but this was really the point – I used to screw up my eyes, put on my best cross face and say, 'F*** off cancer, you little bast***, you're not having me, you're pathetic.' It worked. I'd walk away from the mirror, amused and empowered, and this would dissipate some of the fear until it lurched back again. And then I'd repeat the process.

I decided to do the same. I knew the terrible gloom wasn't real but telling myself that hadn't been powerful enough. So I went back to the mirror, looked myself in the eye and said to myself over and over, that, this was me. I am not that hormonal monstrosity sitting in blackness in the chair. I told myself this until it stuck. I told the hormones to 'f-off', they'd never beat me. I'd beat them. Granted, this sounds like some 10p second hand self-help book from a sales-driven unheard of psycho-babbling guru - but try it. Honestly, it really worked for me.

2. Endorphins
I've always loved sport. I went to a dreadful school academically but it had the most wonderful PE teacher and it all started there. I've known the endorphin rush from running for many years. I know that running, and to a lesser extent other sports, keeps me on the hormonal straight and narrow. For six weeks after surgery I wasn't allowed to run which certainly wasn't helping my sorry state. One day, when the last thing I wanted to do was organise a coffee with friends but knew this was exactly what I should do, pretending everything was absolutely normal, I texted some of my closest allies. I was on a driving ban after the op but I politely refused offers of a lift the one mile down the road to the café, opting instead to walk three miles on my own. I'd walked most days since the operation with the lovely husband and it was good to be out of the house but those had been strolls. I'd benefited from the fresh air, taken in the wonder of the beautiful bluebells, thanked my lucky stars I had him by my side, but it hadn't done anything for the endorphins. This day I didn't wander but, instead, I paced the three miles to the café. I could feel my heart beating faster than it had for days, and could almost touch the darkness – temporarily – leaving.  It was enough to know that if I could engage the help of my endorphins, the hormones would meet their match. In short, I needed to walk - and at a pace.

I continued walking, faster and faster every day. And I even logged my mileage – it wasn't much, but there was enough to feel I'd done something to take back control and that was empowering in itself.

3. Help
I'm quite an independent soul. I don’t often seek advice from people, prefer to sort things out in my own head. I find that when I talk about difficulties I, 1. feel guilty: everyone has their stuff going on and who really needs to hear about mine? 2. feel confused: I generally have firm views of the way forward and somebody else's advice tends to almost derail my resolve, rather than inspire me to do it differently and 3. recognise that I'm not as energised by the conversation as I would be if I just 'had a laugh'. That isn't to say I don't blurt out my inner most thoughts fairly frequently, but I guess I'm not really looking for solutions, more for someone to say, 'That's a nightmare. I feel your pain. Here, have a glass of prosecco with me.'

So I didn’t confide in my friends until I felt better again. But I knew I was not in a good place and that it was foolish to be alone in it.

Rather than simply tell my husband I was down, that the hormones were horrendous and ask him to sympathise, I said that I needed him to help me.  I said that I needed constant reassurance that this wasn't real, that I needed him to force me out of the house, go for my 'power walk' (I knew the importance but you know, sometimes it was raining…) and to make me get enough sleep.  He was brilliant. I think that if I hadn't have asked for help, he would have tried to do the boy-problem-solving-thing which wasn't as effective as giving me a hug and reminding me that we could beat this thing and of the strategy to do it.


The good news is, this situation feels a lifetime ago and yet the operation was less than three months ago. Much of the improvement is due to my hormones calming down (although not so the renewed hot sweats, jeez…) but some is certainly due to having a strategy. I'm lucky that I can now run again and I'm back to normal busy-ness - I'm definitely someone who's better humoured when busy - but I also feel calmer about this new state my body is in because I have faith in the strategies. Combined, they are more powerful than the hormones, so take that menopause, you won't get me that easily.

This is the strategy which worked for me. I'm sure different things work for different people – I'd have thought reading would work for me, for example, I love books and never have enough time to read as much as I'd like, but it didn’t. I couldn’t concentrate – whatever works for you, I really feel that having a plan of attack is your best tool to taking back control.



Jackie Buxton is a writer, editor and teacher of creative writing, living in Yorkshire with her husband and two teenage daughters. Jackie used her recent experience of an aggressive form of breast cancer to inform and dispel some myths about a cancer diagnosis via her popular blog: Agenthood and Submissionville. Her posts became the frame-work of self-help memoire, Tea & Chemo (Urbane Publications, November 2015) which receives heart-warming feedback, and has a five star rating from over 75 reviews. Jackie's recently published first novel, Glass Houses, is about two women's stupid mistakes, the ramifications and the silver linings. Her award-winning short stories can be found in three anthologies, as well as appearing regularly in Chase Magazine. When not writing or reading, over-seeing house and teens, Jackie can be found running, cycling or tripping up though the beautiful Yorkshire countryside.






Links
Blog:                   http://jackiebuxton.blogspot.co.uk


Wednesday, 13 July 2016

The End of the Beginning: Dropping the Breast Cancer Bomb ~ Naz ~ HuffPost Blog

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So, you've met someone. You like them. You think they like you. But you have a secret.......

"When IS the right time to drop the breast cancer bomb?.........
For a woman who is encouraged to ‘move on’ a simple track does not exist. It takes time, years more appropriately, to be able to feel what you once did, or the memory of the return. The scars, the limitations, the menopause, tamoxifen side effects, and the agony, that fear of recurrence, that you may, just may, end up inflicting on the innocent ‘other’: is that justified? Yes, it takes two to tango, but what is that they say about love? It is blind, it is dedication, it is commitment: until death do us apart. The end of the beginning."

Read Naz's beautiful and emotional blog post about finding and losing your heart:

Blog published on HuffPostUK, 13th July 2016

Friday, 8 July 2016

Panning for Poetry ~ Part II

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The poems that follow have all been written by talented members of the Building Resilience in Breast Cancer Facebook private psychoeducational group.

For this feature, our members were asked to share their own poetry, the feelings and consequent words that flowed and helped them through the storm of their breast cancer diagnosis.

Boob job
I've always fancied a boob job I do have to confess
And now I'm getting one free on the NHS
Do I get the tear shaped or do I get the rounds
I don't really care as long as they make nice little mounds.
So many ones to choose from in the nurse's little folders
And as I'm going smaller I can throw out my boulder holders
It'll be a shame to see them gone but a relief all the same
And hopefully I'll like my new boobs and might even give them a name.
A bilateral mx isn't much to look forward to
But it's my decision and I'm determined to see it through
The lymph nodes will go too but I doubt I'll grieve
But just to be on the safe side I'll be ordering a lymphodema sleeve.
All this talk of perkier tits certainly gets my vote
And I wonder when I'm swimming if they'll help keep me afloat?
So many recon options - the ld, diep and the tram
And with dermal slings and strattices I could even end up smelling of ham.
All this talk of expanders and having them pumped up
I wonder at what point they'll stop so I can see my new sized cup
Of course I worry how I'll feel about the inevitable scars
Just hope the stitching is quite neat then I won't look like I'm from mars.
And bloody rads could spoil my plans for my lovely new companions
So I'm praying that they'll stay convex and not turn into canyons
I'm relieved the surgery date is set and the tumours will be gone - phew
And I think I'll go for stick on nipples so better buy in some superglue!

Written by Colette

~

Bikes and boobs
Can I have a bmx?' I used to ask my mum
'No love, ride your chopper, I'm not made of money hun'
Isn't it ironic if you fast forward 30 years
That bmx's and choppers would be causing me some tears

The surgeon with her chopper has taken away my boobs
Well what an op that was and boy did it feature tubes
With seven sticking out of me, I didn't feel too great
Nor sharing with a woman whose snoring made the ward vibrate

So my old, bad boobs have gone and there are new ones in their place
And looking at the scars was something I wasn't sure I could face
But I've had a good nosey round and they look alright to me
They're quite a perky pair even if they wouldn't make page three

Kids are so amazing and will tell you as it is
'Can I see your new boobs Mummy?', my 6 year old did quiz
So I braced myself and showed him - 'what do you think?, I said
'They're so much better Mummy, cos your others were bigger than your head'.

Written by Colette

~
Reflections
I look in the mirror, and what do I see?
I see cancer staring back at me.
I used to see hair, I used to see a face,
now a disease has taken their place.
A constant reminder of what I’ve been through,
I only see one boob, I used to see two.
I’m hopeful that one day I will forget,
but that day isn’t here, not today, not yet.
But when that time comes, and I am set free,
I will look in the mirror
and see
only me.

Written by Caroline

~


b, c
The diary entry
for June 20th 2011
reads ‘Hosp – 3.20’
then ‘lump, day 1’;
b was breast,
c was cancer,
life was upended.

The diary entry
for June 20th 2012
reads ‘1 year’;
b is bee (small with ginger rump),
c is campanula (poscharskyana),
in whose purple blooms
the bee is upended;
and this is life.

Written by Samantha

~

Turn on the Taps
There are no tears
My eyes are dry.
Sometimes I wish I could just cry,
And mourn the loss of things held dear
Instead of holding onto fear,
Of cancer coming back again
In my spine or in my brain.
I should be happy, so they say
The cancer’s gone – hip hip hooray!
But just for once,
Just for today,
I long for tears to wash away
The shame, the guilt, the hurt, the pain
That cancer causes
Again and again.

Written by Caroline

~

Tamoxifen
Tamoxifen
My new best friend,
those sleepless nights that never end.
Depression, hot flushes and the rest
the side effects are not the best.
And yet I take it every day
to make the cancer stay away
because if it comes back instead
I fear the next time I’ll be dead

Written by Caroline

~

Pentameter
A poet may spend years trying to write
the perfect line of iambic poetry;
turns out my oncologist has the best
'As far as we can tell, you're cancer-free.'

© Samantha Newbury, 20 March 2012

~