What do you say?

What do you say to someone diagnosed with cancer?

I've hesitated about writing this blog. Of course, everyone reacts and deals with their diagnosis differently so there can be no rights and wrongs – after all, one man's compliment is another woman's smack in the teeth.

But in my own experience, and in listening to other people who have cancer, there are some common statements issued in good faith by caring souls who believe them to be soothing and consoling, which prove to be the opposite. And as it's frequently said that people don't know what to say when they find out their friend, relative or colleague has cancer, I thought I'd pick out a few classic comments where I suggest you proceed with caution.

Please don’t have nightmares. Much more than the clangers, we talk about the wonderful love and support which gets us through the tricky times. And I can honestly say that nobody has said anything that's made me cross or any more upset than I currently was – apart from the person who insisted on telling me a statistic about prognosis she'd read, but even that was said in good faith.

Compassion, whatever the wording, should never be criticised.

Besides, I'm sure I'm guilty of some of these myself…

We could all be run over by a bus.

Yes, we could, and I appreciate the sentiment. But crossing the road is a risk we take; having cancer is somewhat forced upon us and when we have it, the reality of a premature end is so much more blatant than the potential to find ourselves under the wheels of a bus. I would also say that if we were particularly worried about being run over by a bus, we could take precautions to prevent this unfortunate incident such as never crossing a road. I, and everyone I know who's been touched by cancer, would like to be told the one thing we must do to prevent cancer coming back. And we'd all do it. Unlike not crossing a road, this hasn't been discovered yet.

My friend's brother's sister's cousin had breast cancer twice and is fine.

I understand this one entirely. We all love a success story. Surely when someone has cancer, they also want to hear success stories, right?

Sort of.

But it's a certain kind of success story. Having cancer is about having your mortality thrust in front of your face; however aware you were of it before, it's just so much more immediate now. On diagnosis, I'd suggest there are two questions that people need answered – hopefully in the affirmative: Can I be cured? and, Can I stop it coming back? With cancer, one of the hardest things to believe is that if you're lucky enough to survive the first time, that your body won't get it wrong the next time. When those rogue cancer cells called, your body was found wanting. What logic says your defences will perform better next time? Much logic, actually. There's plenty of research and a wealth of stats to show that your body won't get caught out again and drugs such as Tamoxifen and Herceptin also help your body change its attitude. But whatever the scientists tell us, it takes time to trust your body again after cancer. If you have breast cancer and have had one breast removed, it's really hard to rationalise that you're not going to get cancer in the other one. And next time it might be harder to detect. It might have spread further. It might be more difficult to cure. And even if all the answers were positive, who would relish the idea of another round of treatments?

So, I suggest proceeding with caution in the choice of success stories. Those where people have survived multiple incidences of cancer are another resounding endorsement that recurrence happens. And that isn't something that somebody who's currently dealing with their first bout, wants to think about.

I've just read an article that if you snort three pieces of seaweed (freshly picked that morning from anywhere along the beach between Seahouses and Alnwick on the north coast) on the hour, every hour, they said it could reduce the risk of cancer.

I'm all for well-researched information which has scientific backing. Trust me, I'm as keen as anyone to discover a food source which will give me that piece of mind. But one person's chance hearing can be another person's 24 hours of research and if you magnify that up by all the good folk who've heard a rumour, all of a sudden you're wading through a confusion of unsubstantiated research where much better for your health might have been to relax and read a book. The most helpful suggestions are from those who hear something, carry out the research and only pass on the findings when they've done the work for you. Some people have done this for me and I really appreciate it.

We’re all going to die anyway.

Yes, we are. However, most of us hope that if we do our best to treat our body with respect, we'll live beyond retirement. It isn't something I take for granted but it is a hope. So yes, we will all die one day but when you've just been diagnosed with cancer at 45, your biggest fear is that the day could be forty years earlier than it might have been.

What's the prognosis?

No. Just no. Nobody has asked me this but I was staggered to hear that it was quite a common question and generally from relative strangers. Eeek! I don't think you need me to point out that if somebody hasn't discussed their prognosis, they probably don't want to talk about it. It isn't something you'd forget to mention.

Re chemo aches and groans: at least it means it's working.

It doesn't mean it's working; it doesn't mean anything significant and the inaccuracy of this upsets some people.

Re pending chemo: does it make it easier now you know what to expect?

I think this might be acute paranoia on my part but it feels like the awfulness of chemo is belittled with this question. It's as if, had you'd been stronger or braver rather than fearful for previous doses, the experience wouldn't have been as bad. In truth, knowing what's coming is more likely to make it worse.

You look great.

- when you don't and /or you feel terrible. This offends some people but not me, you can tell me as many times as you like ;)

Why Not Me?

I quite expected to get cancer. Even though I prefer my glass most definitely half full, I've always been a, 'Why not me?', rather than a, 'Why me?' kind of girl. I think accepting the unsavoury situations which jump out at us unbidden, is the first step to giving them a great big slap in the chops.

And 1 in 3 people will contract cancer at some point in their life so why wouldn't one of those people be me? I guess I just hoped that I'd be 109 when it knocked and so short on faculties that I wouldn't really notice. But no matter, I'm here, having treatment for cancer and this is how I intend to move forward.

I thank my lucky stars that I developed cancer in 2014 rather than 1974 because the treatment available these days means that chances of survival for most - alas not all - cancers are so much better than when I was growing up, and rising all the time. But treatment is brutal, expensive and not fool-proof and thus prevention would be infinitely preferable.

Whilst the experts know how cancers are formed, they don't always know why one person contracts cancer and another doesn't. Once the well-publicised triggers such as smoking, excessive alcohol, obesity, sun exposure and genetics have been discounted, medicine puts it down to bad luck. In this case we're grateful for the brilliance of modern treatment and hope that we're not unlucky again.

However, this is the one area of science which doesn't work for me. I get twitchy putting my life in the care of luck. The body is clever but cancer cells are evil little blighters. We're back to my, 'Why not me?' scenario. Something about the mix of my body, my diet, my environment, my genetics, even my character meant that I developed cancer. And I cannot see any logic that says that if I change nothing, this won't happen again. I needed an action plan.

But to be able to hatch my plan, I had to understand how cancer was formed.

I shall endeavour to explain it how I understand it, in my – spent longer revising to scrape through, I reckon it's the easiest science so I'll choose that one, Biology o-level than all my other subjects put together – kind of way. I apologise in advance to those who know their stamen from their stigma or what the periodic table was actually for.

It's all about cells. I imagine our body like a small town inhabited by cells; a little like an ant colony. There are hospitals equipping white blood cells with the tools to fight infection. There's the train collecting and depositing oxygen around the body so that it functions efficiently and productively. Constant building work is going on to make new bones or repair over-stressed muscles and joints. Then of course there are the big organs made up of lots of cells and commanding great respect. If the body gets over-taxed, the lesser organs are ordered to go into standby to ensure the brain and the heart stay in control and manage the body out of the crisis.

It's a very harmonious town. Yes, things go wrong. The control centre for each cell - its DNA - can become damaged and feed it the wrong instructions so that it becomes a faulty cell and be no use to the body. This happens fairly regularly, it would seem, but these Bad Cells are generally expelled; a very necessary and common process in the body's continual pursuit of good health.

However, the body's defences don't always work as effectively as they should do and sometimes a Bad Cell isn't ejected but instead reproduces uncontrollably. Left unchecked (and the body has many checking systems; we are talking a perfect storm here) Bad Cells will eventually grow too powerful for the body's defences. Eventually, our town faces more than a cluster of Bad Cells but instead, a cancerous lump. Now, the most effective tool open to the body is to call in the heavies, the medical profession, who come with a big spade to uproot the lump and cast it from the body forever.

That can be the end of it but if the cancer has been around a while or is a particularly fast growing cancer – like mine, many thanks for that, body – it might have got cocky and started throwing out baby cancer cells which could be hiding somewhere in the body. Or the lump could have taken root in a very built up, hard to reach area and the spade couldn’t get near it. Any chance at all of this and the super powers come in, launching chemo, a bomb which reverberates right around the body. It  kills off all fast growing cells (we hope) such as our hair and disease fighting cells and within this group of fast growing cells are, you betcha, the most fast growing of them all: cancer cells. See you bad boys. In the super power's army are other fighters such as radiotherapy which attack locally and the peace keeping forces such as Herceptin and Tamoxifen (protein and hormone inhibitors without which some types of breast cancer struggle to divide and conquer) which are there to maintain the status quo.

So, back to my action plan. What was it that I did that created an environment in which the Bad Cell thrived? Why didn't my defence system work quite as well as it should have done? And the, 'Why not me?' question: why wouldn't this happen again?

I'm quite a healthy soul. I've always loved sport and spend hours every week doing it. Much to the constant consternation of my sisters and friends (I'll whisper it) I don't much care for cake, am happier munching my way through a bowl of salad. So, she says, glossing over the daughter's warm banana cake devoured last night, my diet is naturally fairly healthy. Breast cancer doesn't run in my family. I've never smoked and when it comes to alcohol, I'm generally considered a, 'bit of a lightweight'. But more about that later.

I'm very wary of scare stories and don’t tend to trust information unless it's endorsed by recognised cancer charities and bodies. My favourites are Cancer Research UK  and Macmillan Cancer Support not least because I know that on their sites, I would have to actively search for statistics, none of which I have any interest in knowing, the very idea of them terrifies me. I've read up on diet, environment and the validity and otherwise of well-documented cancer triggers we hear of in the news and this is what I've come up with. I'm not saying it's a check list of what every person needs to do to prevent cancer or to stop it coming back, nor indeed is it a catch-all list. After all, if it was, I'd be very rich and decorated with various honours, not least the Nobel Prize for Science - and did I mention my lack of aptitude for science? But, in addition to some small diet tweaks, broccoli and walnuts to name but two, here are two changes I've chosen to make based on my own research and lifestyle.

Sleep
There has been much in the press about shift workers living less long than day time workers and there is some evidence that not allowing the body enough time to regenerate can increase the risk of some serious ailments including stroke, obesity, diabetes and, interestingly, the recurrence of aggressive breast cancers.Click for more info. This is early research but to see any link at all when I am someone who's rarely slept more than five hours a night since my teens, was enough for me to make a definite change to my sleeping habits. Before midnight is when I now got to bed, seven hours later is when I wake. Much as I lament that with the new regime has come a loss of ten hours of my old writing time every week, I can't write a book from the next life can I? 

Well, I don't think I can, anyway.

And, an unexpected bi-product was that after only a few nights of better sleep, people noticed. I recognise that people may have expected me to have grown three noses after my diagnosis but nonetheless, I had many comments on how well I looked including one friend who'd said she'd spotted I'd been looking tired (oh the shame) but she'd put it down to us all getting older. Pah! Forget anti-wrinkle cream, my advice for serious, and not so serious reasons, is that if you're skimping on the zzz, get thee to bed!

Alcohol
Remember when I said that I was a bit of a lightweight when it came to alcohol? Unfortunately, women drinking any more than 2-3 units of alcohol a day put themselves at a slightly higher risk of developing breast and other cancers. For men the safe limit is 3-4 units. Click for more info. That's fine, I thought, no need to make any changes there. But then I looked into what a unit really is and realised that 2-3 units per day is actually more like one standard drink a day. I didn't drink every night of the week, nor did I binge drink before, but I did regularly drink more than one glass of alcohol in one sitting. Now I don't drink more than seven units a week and it's been surprisingly easy to make the shift.

No longer do my husband and I crack open a bottle of wine during the week - it would last us a couple of nights, like I say, we're not talking your classic high risk here - unless we have someone round to supper. If we go out at the weekend, I'll have a glass of wine. It's all I need. I just like that first taste, like the first chocolate; always the best and downhill from there. I like the fact that I can join in a toast for someone's birthday, have a splash of wine in the sun, a glass of red with a Sunday roast, but I also like the fact that I don't wake up next morning with the horrendous sinking feeling that I might have increased my risk of breast cancer.

That said, all the advice I've read and been given in hospital is that these are lifetime choices. Break the rules now and again and the result will not be automatic cancer. Nor will all heavy and even light drinkers get breast cancer. Remember, cancerous cells are the result of a perfect storm; a multitude of ongoing factors, only some of which we can influence.

Please don’t have nightmares! And, as always, I'd love to hear your thoughts.

Unashamedly spineless

I had my first dose of chemo this week. It was pretty much as expected. The staff couldn't do enough for me, the cups of tea were plentiful and we were even brought sandwiches and cake thanks to my session being fortuitously allocated to lunch time. After a saline drip was set up, the chemo was administered, in my case, through a cannula in the hand.

And that's it really. The rest of the time you sit and chat and wonder if you have enough eggs at home for Pancake Day – which we did although I wish I hadn't burnt the 'non-stick' pan a few weeks earlier.

I can't pretend it was a walk in the park. It generally feels as if I've had a murky pair of swimming goggles prised over my head resulting in smeared, wobbly vision, a crashing headache and morning sickness without the baby. Oh, and water tastes like flat Alka Seltzer stirred with a dash of mud. But it's one down and that means five to go which is better than where I was last week and another week closer to my ultimate goal: cancer in the past tense.

So, instead of pondering on the well-documented side-effects of chemo, I thought I'd let you know my decision.

Did I go cold?

When I write blog posts I hope that they might entertain and even provide a nugget of information but I don't really expect them to help me make life affecting decisions. However, the flurry of responses which came via Facebook, here, and in person - thank you so much to everyone - really helped my thought process. I quickly realised that what I really wanted to find was an excuse not to wear the Cold Cap; something we'd call in our house, 'an excuse to be a woos', for fear it was spineless not to at least attempt to try it.

Then a friend mentioned two of her friends who did use the Cold Cap. Unfortunately it had no effect for the first but in the case of the second it worked - ish - with her hair thinning but not falling out altogether. However, due to the thinning, the special shampoos needed to minimise the hair loss, the lack of serum, gel or mousse, hair-drying and curling or straightening, the friend hated her hair. No products? I broached. What, no frizz-calming, curl taming products? I'd look like Tina Turner, I exclaimed, perfect in Mad Max, granted, but not, perhaps, in my village. And thinned, curly long hair? Roll over Rab C Nesbitt.

Crucially, the friend was glad she endured the ordeal because she was happy to have her own hair at the end of the treatment.

But, personally, I didn't go for the Cold Cap.

Instead I had my hair cut to ease the pain of it falling out. I picked up my wig from the wig shop. And I sat and thought about ice cream in pancakes rather than Ice Cream Head.

And I'd made the right decision for me.

Unashamedly spineless.

On another matter, I've been writing. I've hacked and added and slashed the word count again and screamed into the deadline for the Bath Novel Award by thirty minutes. The longlist is announced on 24^th March. I never go into these things thinking I'll win, but I always keep my finger ends on the touch of a glimmer of hope until that Fat Lady Has Sung. All whiffs and sprinkles of fairy dust gratefully accepted :) 

Have a great week!

Unrequited devotion to duty

I will admit to not having done a great deal of work of late. It's really difficult to fit it all in around the operations, recuperations, appointments – ahem - trips to coffee shops, trips online… so was delighted to receive my copies of the January / February edition of Chase Magazine and see that I could still occasionally manage to put a few words on paper.

I'm talking about Dear Thing by Julie Cohen and Crossing The Line by Christian Plowman in this edition. 

I only write about books which have blown me away and which I desperately want other people to read. And these two are no exception. The subject matter, surrogacy, is what drove me to Cohen's novel but once in, I found it was as much a story of unrequited love as making babies - an unexpected extra dimension which was joyously painful to read.

The second, Crossing The Line, is an auto-biographical view of life as an undercover detective. It's a theme which wouldn't normally jump out at me but once it had become clear that I'd read the entire first chapter in Waterstones, I felt compelled to buy it. Plowman's story is certainly gripping, powerful and, I admit, quite entertaining (even if I did feel a little voyeuristic in my fascination of the dirty underworld Plowman frequented) but it was also overtly sad and it was the human cost to Plowman which really had me fascinated. 

Please click here to pop over to Chase to read more (pages 50/51).

How's my new companion, cancer today? Well, I'm one step closer to booting the gate-crasher from the party. Last week I had my second official operation (third if you count the unexpected extra one to clear up the burst artery) and I'm back and fighting and just hoping we can finally get on with chemotherapy soon. It's funny the world you enter when you find out you have cancer, when you start wishing things like chemotherapy upon yourself. But the sooner we crack on with it, the sooner we can start talking about cancer in the past tense. Next post I'll tell you about the wig buying trip with my children. If you ask me nicely, I may even include photos.

Pebbles

Sometimes someone chucks a pebble onto the path we're walking and we trip before staggering slowly back to our feet.

Every time a sizeable pebble has been thrown in my direction I've sought solace in writing, either in my own in the form of a diary or in that of others -which has been more tricky. Whenever I've wanted to find real life stories of people who've faced similar pebbles and, most crucially, are walking upright again, I haven't really found them.

When my boyfriend died when he was only 17, I searched for that book but I never found it. Years later I vowed I'd write a version of my story in the hope it might comfort people in their darkest moments that there IS life after the death of a loved one – even at 16 when the world is still so gloriously black and white. But I never wrote it.

When my daughter had a stroke, only 15 small months of age, I devoured websites, support groups, non-fiction and even fiction to find an inspirational story of a baby with half a body paralysed who'd then gone on to lead a happy, fulfilled life. And even though I know the world is packed with such success stories now, my 13 year old daughter being one of them, I couldn't find the story I craved back then.

So, now I learn that I have breast cancer and the path of the next few months – and years – will be well speckled with pebbles on the route to what I pray is a full recovery.

But this time, I've decided that I am going to write it down.

I'm going to blog about the journey. But I want my posts to have purpose, not just to be cathartic for me, but with the aim of calming a few nerves for those in a similar position but who are perhaps a little further back on the road. So I will only post when I feel I have something positive to say, something I've felt or learnt which might help someone in a similar position. It won't be for everyone, already I fear my humour is lurching a little into the macabre, but if I can pass on the message that having cancer is not all bad, then I'll call that a success.

You know, it's really hard to feel down when so many people are showering you with love and caring. Love really is what makes the world go round, or should be anyway. 

Have a great week!

Ellie Williamson

A few months ago I discovered elitewriters.co.uk and got into email correspondence with the site owner, Ellie Williamson. She seemed great, we'd chat about how ridiculous it was, us both being up at 2am in the morning working on our various bits of fiction, seemingly not realising that we weren't actually writing at all but chatting. 


I was going to be the site's profiled writer in July.  I submitted the required pieces of writing - an About You, a Blog Entry and a Short Piece of Fiction but then everything went quiet.  A few days of no response and I had a terrible sense of foreboding.  I knew I'd only 'met' Ellie on-line but she just didn't seem the type of person to suddenly, and without explanation, close all communication.  I kept checking back to the site which was like the Marie Celeste.  I even had the fleeting notion that the site was a scam to fleece my £10 annual membership from me but I had to have a stern word with myself for doubting my instincts; I knew that  Ellie Williamson and her site were completely kosher.

When I got back from holiday, I clicked on the link to elitewriters.co.uk and everything had changed.  A new homepage had been uploaded which explained that Ellie had died after a three year battle with breast cancer.  Her friend and colleague, Lorraine Cornish, who runs Words Undone and also helps out with Active Writers, had decided to take over the site in her memory.

I wouldn't claim to know Ellie or insult those close to her by pretending to feel a grief like theirs but I enjoyed my few months of correspondence with her and do feel real sadness that another person in their mid-forties should lose their life too soon.

So, I'd like to help Lorraine promote elitewriters.co.uk in Ellie's memory.  If you're a writer, please have a look at the site. It's primarily a showcase for writing with constant opportunities to enter competitions and air your missives.  If you're a reader, please pop over there and let us budding wannabes know your thoughts.


My July profile has been resurrected for September so you'll see me over there.  I had to steady my hand when I submitted the featured short story as it's something I wrote ten years ago, annoyed by the rise in cosmetic surgery, even back then.  I rediscovered the story (it isn't as heavy as it sounds) and decided to give it a whirl.  However it's the first time I've ever submitted anything which hasn't been read and critiqued by an army of helpful others.  I'd be keen to know your thoughts - honest!

Thanks for listening and here's to making the best of every moment while we're still lucky enough to be here.