At Wessex Cancer Trust we know that cancer can impact your life long after you’ve been told you’re in remission or are ‘cancer free.’ Others may think you’re OK and that you can, or should, put cancer behind you. They might stop asking how you feel. But going through diagnosis, treatment and recovery can change your outlook on life completely and you may still be living with the physical effects of treatment which mean you can’t simply go back to your ‘old’ life.
Could cancer, though, be a catalyst for a freer and more positive life?
One of our lovely volunteers, Jackie Evans, has kindly shared her story about moving on from cancer:
Five years ago, when I was 49, I was trying on bras in M&S and felt a lump. My heart sank and I feared the worst. Tests, scans and biopsies showed I had an unusual, very aggressive type of cancer called “triple-negative” which doesn’t respond to traditional hormone cancer treatments. I researched it and feared the worst, but I felt reassured when my oncologist said there was a plan and that the prognosis was good. Because of my age, they wanted to try and shrink the tumour with chemotherapy first and then do breast-conserving surgery afterwards, rather than an immediate mastectomy. This was still a possibility though as scans had revealed a second tumour on my chest wall.
As a finance manager, I was well-organised and methodical, and I tried to use this mindset to get through treatment. But I soon found that living with cancer wasn’t the same as work. I started to feel that my life was a rollercoaster I had no control over. I had to live one day at a time, not thinking about the future or making any plans. I had to keep cancelling meet-ups with friends because I felt nauseous and dizzy, and I began to experience many different emotions too; I felt angry (why me?), isolated, alone and terrified for the future.
I remember my first chemotherapy cycle in the very hot summer of 2016. I was watching the Rio Olympics on TV on a Saturday evening wearing thick socks and a jumper, shivering with cold. My temperature had spiked and I was admitted to hospital later that evening with an infection and Neutropenia Sepsis and given emergency IV antibiotics to save my life. I started to lose my hair which was one of the most traumatic memories of my treatment and I had to face wearing wigs or scarves, with people staring at me. I had another stay in hospital when I could barely walk due to ‘bone pain’ from the self-administered daily injections to stimulate my white blood cells. I also needed a blood transfusion on my fifth chemotherapy cycle as my red blood count had dropped. Two weeks after my last chemotherapy I had surgery and six weeks after that I had 19 rounds of radiotherapy. The treatment for any type of cancer is tough – physically, mentally, emotionally and financially – and we needed the support of others to get through it. Luckily, I had really good support from my family, friends, support groups, work colleagues and even my employer, but I know that some people are not as fortunate and many have to work during treatment.
Cancer affected some of my friendships. I had a close friend who just stopped contacting me, and that hurt. Other friends stepped up, however, and previous ‘acquaintances’ become close friends. They were so supportive and kept me going. I formed close bonds with others going through cancer treatment, but some of these were bitter sweet when they subsequently passed away. So when I was told that my treatment had worked, I was cancer free, I felt incredibly guilty. They call this, ‘survivor’s guilt.’
But then, the rollercoaster stopped. The appointments, the treatment, the routine. It all stopped. I thought I would quickly recover and step back into my pre-cancer life. But how wrong I was.
As the months went on, it become apparent that I couldn’t return to my finance manager role due to the prolonged side effects and nerve damage from the chemotherapy. At the age of 51, I was medically retired. Cancer had already taken a lot from me physically, and now it had taken away my career, my way of life and my financial independence. The anger returned. I had so much knowledge and experience that I couldn’t be on the ‘scrap heap’ at 51! Pre-cancer I would go to the gym classes regularly, but now I was struggling to walk down the street.
After a while, I made the decision to sell my ‘work wardrobe’ on Ebay – my handbags, shoes and clothes, because why would I need them? I needed to buy ‘comfortable’ shoes now, and I was claiming benefits for the first time in my life. ‘Retirement’ signalled the end of my previous life, but it wasn’t my choice, so selling my possessions made the loss a little easier to cope with. It was heart-breaking and scary. It felt like the end of my life as I knew it, but I didn’t yet know what the future held for me as I started to come to terms with living with the after effects of cancer treatment.
I started volunteering in the office and at fundraising events for a local breast cancer charity in 2017 and I really think that without this to fall back on my mental health would have suffered hugely. It gave me a purpose and a feeling of belonging when my finance role had ended and I could test out my ‘new body’ without the pressure of deadlines. I met some truly amazing women and men there, all at different stages of their breast cancer journeys, and I formed a bond for life with many of them. We shared happy and sad tears, lots of laughter, raised lots of money for the charity and we even met a number of celebrities at the fundraising events.
As time’s gone by, it’s become clear that my physical and lifestyle changes are here to stay, despite many hours of researching and reading online. I never give up hope of finding a cure or ways to ease my side-effects. Nearly five years after my diagnosis, my hair hasn’t grown back (chemotherapy induced alopecia) and my nerve damage (chemotherapy induced peripheral neuropathy) causes constant tingling and stabbing pains in my hands and feet. Areas of numbness in these areas make swimming pools and showers a dangerous place and we’ve had to install grab-rails in the bathroom. Pain medication helps, as does keeping busy and having a focus. So, in 2018, I began working with another small cancer charity working with the NHS and also started to help run a local cancer support group. It’s a privilege and an honour to be able to help so many people going through what I went through.
I now know that these conditions are pretty rare and I’ve volunteered to help University studies into the possible causes. If I can help prevent these life-changing conditions from happening to other patients it will be worth it.
So many elements of my life will never be the same again, but over time I’ve realised that cancer has given me a ‘Sliding Doors’ moment. Having cancer has been a catalyst to live my life differently. Life pre-cancer had been so full of routine with everything deadline-driven and done at breakneck speed. For the first time in my adult life, I’m no longer defined by my job. I feel freer , calmer and more spontaneous. It’s been liberating, but quite scary.
And it doesn’t matter about the handbags and shoes. The material things aren’t important, but the people around you are.
I’ve just had my second reconstructive surgery so I’m still very much living with the after-effects of cancer, but I’m starting to put it behind me and live my life with renewed energy and purpose. Every day when I look in the mirror, I’m reminded of what I went through, but now I use my experiences to help others. I wouldn’t wish cancer on anyone and as someone who’s been there, I know the future can look very scary, but it can also be a catalyst for a new and freer life, if you want it to be.