Recurrence roulette

It's a few days until my first mammogram - almost one year to the day since my diagnosis. With Triple Negative Breast Cancer the chances of recurrence in the first two to three years are pretty high - reports settle on between 20% and 40%, and the prognosis is significantly poorer if it comes back this soon. This is largely because there are few targeted therapies for TNBC, unlike the hormone treatments for other types. So, to me, the mammogram is a bit like having a gun pointed at you with three or four blanks and one or two bullets in it. It's scary. There's also the challenge of being told by well-meaning friends and family to 'be positive' when truthfully there's absolutely nothing you can do to change the outcome. It really is all down to chance. So, what can we do to manage this fear? I've done a lot of work on relaxation techniques, read a lot of books on living for the moment (the Power of Now is a good one, as is anything by Brene Brown) and talked openly with friends. My advice is to talk openly to someone who's had cancer. It's impossible for anyone who hasn't been in your shoes (or bra in this case) to understand how you feel, and friends and family want to say something to help you and don't want to think about losing you themselves, so it's hard to be truly honest with them or for them to be truly honest with you. I think that confronting how you feel and being pragmatic without being 'doom and gloom' is probably the best bet. If it's back, you can deal with it then. If it's not, you can celebrate wildly...until next year!

Amanda

It's scary, I'm not going to lie

Warning: your hair might grow back ridiculous

Many people advised that my hair might grow back curly. Others said that it could come back a completely different colour. Few predicted that I would be working a full-on 70s Northern Soul vibe only a few months after treatment. My initial joy to have hair at all has now been replaced by wry confusion at this untameable barnet. I am on my first 'big' holiday after treatment. Having a truly marvellous time. However, my 'hair' has taken on a personality all of its own. Formerly straight with a slight kink and a light mousey colour au naturel, it is now a very dark brown, almost black and almost afro. In the mornings I style it to look as pixie-crop-like as possible. Then throughout the day it grows vertically and curls up on itself until it looks like it belongs to someone else entirely. No-one would suspect that I had cancer only a few months ago, but they were right when they warned..it could come back curly. And...most of my eyelashes fell out again annoyingly. I would suggest that you give them about six months or so to recover before subjecting them to too much beautification, and as for the hair..embrace it...or start a 70s tribute act.

Amanda

What I could look like without 'product'

The science of cancer - not really that scientific

If you're like me and like to know what you're dealing with, then brace yourself for your three month post-cancer review. Apart from a dreadful misunderstanding where the oncologist thought I said I had put on three to four stone and told me to go to WeightWatchers (I actually said three quarters of a stone), there was very little to report in the session. What I was hoping for was a list of things to do to minimise recurrence, confirmation of whether the treatment had worked and a review of my prognosis. What you actually get told is basically just get on with your life, eat healthily, exercise, minimise your vices and then hope for the best. As cancer is made up of tiny little particles, there's no scan or test to see if it's gone. Instead you just need to attend regular mammograms and ensure that you are vigilant about any bodily changes. So, there's no spreadsheet, report or certificate. Whilst on the one hand that's a little nerve-wracking, on the other you really just have to forget about it and resume life as usual. I'm certainly doing that, and so is Debbie. Cancer...oh that? It was just a blip...

Amanda

I also had my three month review a fortnight ago (Nov 25th) and pretty much had the same experience as Amanda. I had a thorough examination (whereby I held my breath until the consultant said that all was ok), he then asked me a couple of questions to which I responded with questions of my own but I didn't quite get the answers I was after.
Consultant: 'Do you still have hot sweats?'
Me: 'Not as bad, they seem to have calmed down'
Consultant: 'Are you taking Evening Primrose Oil?'
Me: 'No, I read it contains traces of oestrogen and because my cancer was oestrogen+, I don't want to put more into my body'
Consultant: 'hhmmph'
Me: 'When I have my mammogram, will I only have the one breast zapped?' (I had a mastectomy and reconstruction = no breast tissue)
Consultant: 'You'll have both done'
Me: ' But one is an implant and I have no breast tissue?'
Consultant: 'hhmmph'
Me: 'I have sore knees, could it be from the Tamoxifen?' (Painful joints are listed as a side effect)
Consultant: 'If they bother you then see your GP'
Thank you very much and see you in six months!!

Debbie

The plan is...there is no plan

First post-cancer haircut

The big day finally arrived on Saturday! I had my first post-cancer haircut. Now I have what has been described by lots of lovely people as a 'pixie cut' or a 'legitimate haircut'. So now, no-one looks at me with that combination of curiosity and pity, and I could quite easily be perceived as having chosen a dramatic cut as part of a mid-life crisis (or maybe to change my appearance to avoid the paparazzi/police). I can't lie by telling you I like it, but it's bearable. Coupled with eyelash extensions (done by a local beautician), I look kind of..OK...maybe even nice! So I have a plan now. I am going to grow it out on top but keep the sides short and then ultimately go for a bob. My hairdresser is looking into how long it needs to be before I can have extensions, and I decided to keep the colour as it is for now (a dark mousy colour), so watch this space. My advice though would be to get it cut as soon as it is about an inch long. Whilst it feels counter-intuitive to cut the hair you have been waiting desperately to grow, a decent haircut makes a huge difference. Just shaping the sides makes you look and feel a whole lot better.

Amanda

The plan - I reckon I'm four months from number one

I am now 5 months post chemo and have what I can only describe as a pixie cut as Amanda has described already. My hair is growing back dark. And curly. And it grows upbank!
I aren't sure if it's a compliment or not but I've been told that I'm the spitting image of both of my brothers. Thanks for that friends!! Strangely, they're losing their hair whereas mine is now growing thicker and stronger!
However, I will add that I really aren't bothered what colour, texture or direction my hair grows back, at least it's growing back.
For me, when I see Amanda, I always LOVE her hair. She is 6 weeks ahead of me in the hair process so at least it gives me an insight in to how my hair will be very soon.

Debbie

Tips for husbands part four - hair (or lack therof)

Hair today, gone tomorrow

One of the big issues we experienced was hair substitutes. Amanda was quite adamant from the start that she wanted the best wig, money no object. Unfortunately, due to the severity of her migraines it turned out that her expensive wig was too painful for her to wear, but it also raised issues about whether Amanda really wanted a wig in the first place. There’s plenty of advice out there that you’ll find out about during treatment. The important thing is what makes YOU feel comfortable. Bandana? No problem…
Wig? Absolutely fine….
Hat? No qualms with that.

The important thing is to do what makes YOU feel comfortable, and not what others feel is acceptable. This is YOUR condition to deal with, not others. Don’t worry about what other people think, they’re not on the receiving end of some pretty brutal treatment over the course of the next few months. Don’t waste your time worrying about what others might think.

Amanda's husband

If only I looked this good during my bald phase

Tips for husbands part three - avoid clichés

Avoid clichés

“Stay Positive” was something people kept saying throughout the treatment. Despite good intentions, it quickly became apparent that unless you’ve experienced at first hand, the horror and shock to the system that diagnosis and prolonged treatment that the discovery of something so devastating to life such as cancer leads to, words like this become scoffed at.

It’s hard to stay positive when your body is pumped full of poison.

It’s hard to stay positive when you’re having to sit helplessly in a room next to the bathroom listening to your partner vomit repeatedly for 12 hours, when the emergency doctor visits to try and make severe pains disappear only for them to return.

It’s hard to stay positive when you’re having to take your partner to the hospital after a migraine so severe that even a chronic migraine sufferer is at the end of her tether, then have to go to hospital only to stop twice on the way to be spectacularly ill then spend three hours in Accident & Emergency only for them to be able to do nothing.

It’s hard to stay positive when your partner’s dignity, appearance and personality are stripped to the core. The years of nurturing, the years of dry hair shampoo, the years of hair straightening, the years of immaculate presentation, all removed with just a few cuts of a hairdresser’s scissors. (Amanda decided to shave her hair off and donate her hair to the Little Princess Trust which provides real-hair wigs to boys and girls across the UK and Ireland that have sadly lost their own hair through cancer treatment. More info here http://www.littleprincesses.org.uk/)

So if you don’t feel like “staying positive”, don’t.

Amanda's husband

Errmm...we don't really

Tips for husbands part two - nothing is too much trouble

Nothing is ever too much trouble

·         trips to the chemist for piles cream

·         trips to the local supermarket as your wife has a craving for her favourite snacks/’cancer craving’

·         picking up prescriptions, trips to the hospital – seemingly trivial things

·         trips to the local Harvester for bowls of “all you can eat” salad

Your partner is bound to feel low during her treatment. Arrange for friends to drop in surprise texts/treats at intervals during the course of the treatment. One thing that worked well for Amanda was arranging for her friends to text her with random memories of their friendship. During particularly heavy days, many messages would come through, lighting up the mood.

Little surprises

Has your partner got a pastime or hobby? I arranged for Amanda to be sent a signed football shirt from her favourite football player of her beloved football team. Think outside the box on how you can get things like this arranged.

Make allowances for things

Fortunately I work from home, but had very understanding support from my employer and teammates who allowed me as much time during treatment to support Amanda with hospital visits, emergency hospital visits that I needed. Be upfront and honest with your employer throughout the course of treatment.

Nothing is too much trouble - EVER!

Amanda's husband