I’m back in the saddle – Carole on coming to terms with living with cancer

Wednesday 10 May 2023

Maggie's West London

Before my diagnosis of myeloma in 2018, I had never heard the word before.

One evening I was on my way to the shop. I reached the top of my road and had what felt like a panic attack.

I went for some blood tests, then some more. My doctor sent me off to the haematology department.

From the moment the doctor said the word ‘myeloma’, I asked ‘what’s that?’ and he replied that it was cancer of the blood plasma, I didn’t hear anything else.

The word ‘cancer’ engulfed me.

All I could think was 'I'm going to die. I wonder how long I've got left.’

I thought about my two children. I had three, one died from leukaemia when she was very young. She would be 47 now. That played into me thinking that I was going to die.

Starting treatment

I had no idea what to expect when chemotherapy started. By the fourth cycle, didn’t I know I was having chemo!

You feel you’re taking something so toxic it could fuel a nuclear bomb.

Next was a stem cell transplant where I had my own stem cells put back in to me. The medicine you take beforehand was very intense.

I thought I was fatigued from chemo, but this was phenomenal.

I couldn’t even lift a cup, every fibre of my body was exhausted. It took a good few months to recover.

But, right now I'm in partial remission from myeloma.

My team say I could stay like that for years. I know it’s ‘when’ not ‘if’ I relapse.

At first, living with this knowledge was awful. You’re consumed by thoughts of your children. Your grandchildren. Planning my funeral. How long have I got? What will I do about my finances?

But now I’ve come to a good place, living with myeloma. My life is limited, but then so is everybody else’s. I could still get run over by a bus tomorrow.

I was able to put things into perspective.

Finding Maggie’s

I didn't come to Maggie’s for quite a while because I wasn’t well enough.

When I came in, I was welcomed and sat down in one of the small rooms. I thought ‘this is so nice – I don’t have to do anything.'

It felt like the opposite of the hustle and bustle of the hospital. The opposite of my friends and family treating me like I was on death’s door. The opposite of not knowing what to say to the doctors.

"It was solace, no one judged me and I felt no pressure."

It helped me answer my questions that might seem minuscule and irrelevant to a doctor, but you need someone to deal with the social side. I could ask those things here.

A second cancer diagnosis

I went for a routine mammogram last year. Then I was called back for another test.

I was shown an X-ray of my breast with some white dots in it. It turned out that it was a pre-cancer, high grade ductal carcinoma in situ (DCIS) which I had never heard of.

Immediately, hearing the word ‘cancer’ I shut down.

‘I can’t do this again. I’m going to die. It’s a second cancer. This must be it.’

It wasn’t life-threatening but it was difficult; I needed a couple of operations to remove it as well as radiotherapy. I put on a brave front for my kids and swept it under the carpet.

I was in a really bad place. I wasn’t going out and I could feel myself sliding into a depression. I could recognise that but I couldn’t stop it.

My self-worth went downhill. ‘I’m single, who’s going to want me with cancer?’

The conversations I would have with myself over and over were draining.

But I knew where I needed to go. I thought ‘let me go to Maggie's’.

Coming back to Maggie's

I walked in silently crying. Within minutes, I was booked in to see a psychologist, Lorena. We had appointments for six months.

Mostly, what I felt was anxiety. My mind was so frantic, I couldn’t think logically.

Lorena taught me to look at the anxiety, and then to ground myself. It totally re-programmed my brain. She brought me back down to earth, put my feet on the ground and gave me myself back.

Cancer is part of my life but it’s not the main part anymore. I’m back in the saddle.

The future

I’m single and I hadn’t been in a relationship for so long because of the cancer. I used to be scared of being rejected. Of them seeing my boob which is disfigured and not being wanted.

Maggie’s helped me get to a place where I can date again. After my sessions with Lorena, I’ve changed my mindset.

I think now that if someone can’t accept me as I am, with cancer, they’re not the person for me.

I know there will be darker days and I’ll need Maggie’s even more then.

Hopefully that’s a long time away but the beauty of it is that there’s no time limit.

We're here for you

We're here for you during this time, call us on 0300 123 180, email enquiries@maggies.org or book a time to visit us.

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