Written by Ailsa Jenkins

Health

Cut, Poisoned and Burnt: Me, breast cancer and a charity that made all the difference

While the NHS took brilliant medical care of Ailsa Jenkins’ breast cancer diagnosis, the TV producer will always be grateful charity Breast Cancer Care were around to help with the emotional luggage which comes as standard on this particular journey.

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I took this photo of my prosthesis the night before I had reconstructive surgery

My life was really starting to come together. I had great projects on in work, a new boyfriend and was slipping into a pair of size 10 jeans for the first time since I was the same age as the label. So finding a lump in my right boob didn’t worry me at all.

It had to be a cyst. If it was cancer, I’d be skinny, grey and ill and I wasn’t. Also I was 42 and that was too young. Wrong on both counts.

Cancer happens to other people, so it was the strangest thing in the world to be told I had it. Treatment was to be a mastectomy, chemotherapy, radiotherapy and hormone drugs for a decade.

Collectively, the first three are also known, in cancer patient circles, as being Cut, Poisoned and Burnt. A brutal but accurate, if over-simplified, description of what was about to happen.

The medical care I had was vast, complicated and first class. I’d had little experience of the NHS before, but I don’t think I would have got better treatment if I’d gone private.

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Another from the hospital photo album – kind of does what it says on the tin

I am lucky to live in Cardiff, which has amazing breast cancer services at Llandough and Velindre Hospitals.

Having cancer is surprisingly busy with tests, scans and appointments, so I had little time to contemplate my own death. Losing a breast was incomprehensible to me, but my breast care nurse, Helen McGarrigle, helped me through by showing me pictures and spending hours talking to me about it.
But while the NHS did a spectacular job, there was still the emotional side of it to deal with.

And that’s where Breast Cancer Care came in. A UK charity started in 1973, it provides information and support to people with breast cancer.

So between surgery and chemo, I started a four-week Breast Cancer Rehab at their Cardiff office.
It told me everything I didn’t even realise I needed to know. In a room full of about 20 women, we came together every Monday morning and covered fatigue; nausea; benefits; sex; relationships; lymphoedema; skin care during and after treatment; employment law and rights; weight; food and nutrition.

Most importantly, I got to sit in a room with other women who were going through what I was going through, which helped it all sink in a little bit more.

Their hair loss service, Headstrong, showed me how to to tie and wear a headscarf, as well as how to look after my naked scalp and new hair later on down the line.
Up until this point, I’d been able to hide the effects of my cancer under my t-shirt with a prosthesis. The chemo I was due to have meant every hair on my body was going to fall out, which was fine from the neck down.
The neck up was a totally different ball-game. It wasn’t really even my hair, as I planned to go for the Joan Collins 1970s Riviera look, all head-scarves and aviator shades with big silver hoops. It was the loss of my eye-lashes and eye-brows that bothered me the most. Then there’d be no privacy about what was happening.
I also met and talked with women in the first rehab session, at various stages of hair loss and treatment, an important part in preparing me.

At one of the sessions, I heard a nurse recount a conversation she’d had with a cancer patient, who had told her they ‘just wanted to go back to normal.’ She replied that there was no going back to normal, it was about a new normal.
This is one of the best things I heard. I don’t want old normal back. Old normal gave me cancer.

One of the many gifts breast cancer treatment gives you, if you are younger, is that it pushes you into an early and extreme menopause, triggered by chemo.

Dealing with it is very different to a normal menopause so I went along to a Breast Cancer Care menopause session to find out how I could manage it better. I knew nothing about the menopause and was horrified by it all. No one tell us about it. They tell us about the beginning bit, the periods and puberty, but not the end bit. Now I know why.

The thinning of the womb walls, the dryness, the weight gain. As I had an oestrogen-based cancer, I couldn’t take anything for the cold sweats, hot flushes or mood swings. I could try sage tea, but that doesn’t really cut it against a tidal wave of chemically induced and hot-flushed mood swings.

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Me on oxygen in hospital

Upset and depressed about the my diminishing capacity as a woman, I was in the best possible place to hear this stuff – with other women, who were facing the same sleepless-nighted future. We drank tea, swapped tips stories and worries. It was like a great big warm comfort blanket to not be alone with it all.

The other invaluable session I attended was on breast reconstruction, which I’d always planned to have. I wanted to find out what kind of new boob I could have. Up until that point I hadn’t had time to think about what it might look like, just that I’d get a replacement.

But you can never get back a naturally formed breast. Nor would it look like an implanted boob job because you need a breast in the first place to build upon. I also had to think about how weight gain would play out if I had an implant. The first place I lose and gain weight is my chest and I realised how distressing it would be to have one dramatically bigger than the other.

We were shown pictures and I realised we never see pictures of normal women’s boobs in the media. They’re all implanted or pert and small. Most women’s boobs sag from age, time, gravity and children. Sitting next to Lynne Rosser-Hoare, it woke both of us up to the reality of reconstruction.

“The best thing they told us was to manage our expectations,” says Lynne, who’s 53, from Cardiff and would highly recommend Breast Cancer Care to anyone with the diagnosis.

“It makes you realise you’re not on your own. One of the women, who gave a talk on money and finances, had had the same type cancer and grade as me and she’d survived, which was brilliant to see because I was told mine had more chance of coming back.

“I don’t think you realise how good it is until you’re there. It’s very practical emotionally and mentally as well as the physical tips. It would be good if there was something for family and friends too, for people who are looking after you as it’s such a stressful time.”

About 400 men and 50,000 women are diagnosed in the UK with breast cancer every year. For the women affected, it takes so much that is female away. You can lose your breast, your fertility, your hair – if you’re lucky – because you’ve survived. It’s a long and slow process to take this life-threatening and life-changing illness in and move beyond it.

As long as charities like Breast Cancer Care are there, that journey is a little bit easier.

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About Breast Cancer Care

Breast Cancer Care is the only specialist breast cancer support charity working throughout the UK. Its specialist nurses, local services and emotional support network mean there’s always someone to turn to for information and support.

Breast Cancer Care services are there to support people affected by breast cancer every step of the way. Those diagnosed can talk to someone who understands, have their questions answered or join up with others at a local service, where information sessions, short courses and support groups are all accessible, free of charge.

The charity also campaigns for better support and care and promote the importance of early detection.

For more information or to contact the charity, visit www.breastcancercare.org.uk or call our free helpline on 0808 800 6000.

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Written by Ailsa Jenkins

TV producer and writer. If I like something, I play with it until it breaks. @AilsaJenkins