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I’m In The Land Of The Living Again

When we went into lockdown in March 2020, I was ok just busy at work. I had a bit of an upset stomach and diarrhoea. I thought I was stressed, drinking too much beer, not eating right. Lockdown was a weird time.

By the summer, in and out of lockdown, work stress and life stress was just building and getting worse. I was talking to my cousins about my upset stomach and they encouraged me to go to the doctor, ‘You’ve been saying you’ve had this most of the year.’

So I thought, I’ll just go. I remember joking, ‘As long as it’s not cancer’. No way did I ever let that enter my mind. It happens to everybody else, not me. I didn’t have pain, no discomfort. Just a mild stomach ache and some diarrhoea. That’s all. Crazy!

I did one of those test and within days I was called in for a colonoscopy, which bothered me. I had that done and immediately after they told me I had cancer, right then and there.

“You have a very large tumour blocking the colon, we couldn’t get all the way through. It’s preventing us passing the camera through”. I was very upset, naturally. I was thinking it was colitis or something like that. It was pretty ‘BOOM’. It was a stage three tumour and it was outside of the colon, up against my abdominal wall.

I was scared of dying. I thought, ‘Please, let me have a year at least’, bargaining in my mind. ‘Just let me get a few things done.’ I blamed myself. I didn’t look after myself. I felt ashamed it was bowel cancer, I couldn’t even say the words. I always said colon cancer instead. I felt  humiliated and it was awful.

They didn’t hang around. It was then one thing after another, all pretty swift.

My surgery was nearly delayed once because the surgeons were fighting for theatre space due to Covid but if I waited too long there was a chance that the tumour would attach to my abdominal wall. It would have to be removed and I would have to have a mesh and possibly a stoma.

Also, because it was blocking my colon, I had to go on a low residue diet, I lost a ton of weight and ate very little. My daughter was amazing, making soup and immune shots. Lucky for me she had come back from Sri Lanka just before the lockdown.

From diagnosis to surgery it was only six weeks. It was swift. The whole time I was thinking, ‘Get this thing out of me, get it out’. Aix weeks later I was having a right hemi colectomy. They removed half of my large intestine along with the tumour. The surgeon was wonderful and the specialist nurses were amazing and still are. Brilliant, brilliant people!

The tumour hadn’t attached to my abdominal wall. It was keyhole surgery so I have tiny little scars. I was really lucky. Oncology wanted me to have chemo. They thought they had it all but it was tracking towards the lymphnodes so they thought best I have some chemo. They wanted to give me two types, intravenous and tablets for three months. I was warned that intravenous could cause neuropathy in hands and feet and be permanent.

I’m an artist. If I cannot hold a pencil or a pen. I would rather die, actually. I would rather take my chances.

I gave it one round and I promised myself when I came home that I would never do it again. I couldn’t even hold a pen let alone write. Honestly it felt like liquid evil going into my arms. Never doing it again. Oncology said fine and instead I did the tablets for six months instead of three.

At the beginning of 2021 I bought a campervan and I went off in it to do my chemo for six months.

Having bowel surgery means it’s a bit tricky with the toilet, there’s often urgency. In the van I could go anywhere but still be confident I wasn’t gonna have an accident. It was a big loss of control.

Cancer completely changed how I thought about my life and myself. I’m still coming to terms with it. In a weird way I’m almost grateful, although extremely happy it’s behind me now. My work was a run away train and I couldn’t get off; private practice, working at schools, teaching at uni, at psychotherapy school, supervising, running a team. I didn’t know how to stop.

Cancer said, ‘Have some of that, you’re gonna stop now’ and I haven’t gone back. It’s a massive adjustment. I’ve had to grieve the loss of an old life because my life is completely changed. I’m different in a better way, my life is better somehow. It’s making me live every moment now.

During Covid, support services were shut, I couldn’t lean on people in the usual way. You had to get on with it on your own. I wanted to be around some people that had had cancer. I knew that I needed therapeutic support. I was crying a lot, in a bit of a state.

My family and friends were amazing but I didn’t want to frighten them. You’re dealing with other people’s sadness and fear too. So I tried to be very strong the whole time. I would take myself off in the van or walk in the woods. My daughter would say, ‘Where’ve you been? You’ve been gone for hours’. I needed that time to top myself up to be OK.

Some people don’t mean it but they don’t want to keep talking about cancer. They think that because you don’t have cancer anymore, ‘You’re alright now it’s over’ and they don’t want to keep talking about it and why would they, it’s pretty awful really.

I understood that but I needed somewhere I could go and talk to people who had been through it and be in a place where cancer is welcomed. Where you can talk about it all day long if you want and no one will tell you to stop or that’s enough now. Somewhere to be understood and to be held.

The cancer nurses mentioned The Nightingale. I remember coming to meet Fiona for the first time for my initial assessment and crying with absolute relief that there was support.

It had been barren in lockdown, so isolating. If my daughter hadn’t come home I would have been fully alone in my house except for the wonderful visits from friends and family in my garden, even in winter! I don’t know how I would have coped.

Fitsteps was the first thing I did and I  remember being in the class and crying and trying to hide it because I was so overjoyed, I was so moved to be in a group of women together. That sense of  belonging, comradery, just the support of others was absolutely overwhelming.

Those women, we’re all really close now. We go out for lunch together. I can’t explain how important it was. It showed me there is a world out there after cancer and now these women are my friends for life.

Mindfulness also helped massively and I still use those tools now. Being in groups I’ve found really important. Massage made my body feel OK again, acceptable and hugely restorative.

As a therapist I knew I needed counselling! I was matched very well with Jacey. We worked very well together and it has helped me so much. I have so much gratitude to her for that. It’s gotten to the bedrock of me that  was a bit messed up. I’ve been able to look at past, present and future versions of myself and know that the help is extending into my future.

All of the services were pieces of a puzzle that have brought me to Amanda 2.0. I’m slightly better than I was before. Even though I’ve lost stuff and shed my old life, this has helped me step into the new version of me that I’ve always dreamed I could be.

Being a model for The Fashion Show was fantastic. That was such an exciting time, very life affirming. Doing something that focused on fashion, body, beauty and looks, after your body has been changed, is very powerful. It made me feel much better about myself and my body. Again, with those women I became close to, the excitement and bonding made for such a tremendous day. Honestly, I felt like a star, really good about myself. I was nervous but we were all together and it was beautiful.

This place has allowed me to take what I need from it. It has given me a space where I can be myself in whatever way that is, which might change every visit. You keep up with me and my needs. Coming in I can be happy or miserable but either way I’m accepted.

The Nightingale is a life line. I know that I could rock up here any day, without an appointment and sit down with a cup of tea. Even if I never do that, knowing I can do that makes me feel safer. A really comforting thing.

Don’t hesitate to come and get support. Coming to a professional centre where people know how to handle your needs and there are people there who know exactly how you feel because they’ve been through it and are going through it. You can lean on each other.

There’s no shame in getting support. You’re just sharing the load and sharing the love. You need that. You can do as little or as much as you like. You can walk away at any point but I think if you come here you’ll think, ‘Brilliant, there’s something for me.’

I’m in the land of the living again excited about life. This place has brought me back to life, literally. My body was healing but my mind and emotions felt quite broken. I didn’t just feel like a cancer survivor, I felt  alive as opposed to half dead.

I’m massively grateful to this place. I can’t imagine having got so well emotionally and mentally and got as strong as I am now. I wouldn’t have got here this fast without The Nightingale. I feel excited about life.

They are a light in the dark. Having cancer is a long dark night and you need light at the end of the tunnel. This place gives it in buckets.