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Health, Life By Hannah Gale

What It’s Like To Be Living With Stage 4 Cancer In Your Thirties

11/03/2021 by Hannah Gale

10 Min Read

Jolene Dyke, had just left university when she was given the last thing any woman in her early twenties expects to hear: that she has stage four cancer and not long to live. Jolene (who is now 33) shares her story with us. She lives in the Midlands and works in communications for the local government.

She says…

“It all started in the summer of 2005 after I had completed my A-levels. I took my mum’s advice and had a suspicious looking mole on my neck removed. It seemed to have grown larger, changed in colour and had become itchy – but as I have never been one to go out in the sun much, I don’t remember worrying about it. I saw the GP on a Friday (she asked some medical students to examine the mole, which gave me a vague feeling that not all was as it seemed), and I had an appointment to have it removed the following week. It seems obvious now how serious it was – and I was told it was cancerous.”

“After that I had check-ups – but no scans – for five years, until I found a lump on my arm in 2010. I had been feeling very unwell and kept getting migraines, so was referred for MRI and CT scans to rule anything out. It was then – just a few months after I’d graduated from university – that I was diagnosed with both a brain tumour and a lung tumour and told my likely life expectancy would be around 18 months.”

“It was a lot to take in. I had surgery to remove both the brain tumour and the lung tumour and was diagnosed with stage IV melanoma (skin cancer). I took six months off work to recover and then went without treatment for four years, having regular scans to check everything was all clear. In mid-2014 my cancer returned in my bowel and I had another operation to remove part of my small bowel. I then started systemic treatment to help stop the cancer spreading. Once I had completed a mandatory cycle of chemotherapy, I was able to have a course of another drug – Ipilimumab. I was due to have a course of four cycles as the drug would take several months to become effective. However after I had been given two doses, I started to experience similar pain to the kind I had before the surgery in my bowel and had to change treatments. In mid-2016, just before my 29th birthday I had another operation to remove more of my bowel as my melanoma had returned – my treatment had stopped working. After another successful operation I began a course of another immunotherapy drug – Pembrolizumab. I had very little side effects except for fatigue, and, luckily after just over two years of stable results I finished treatment and have now been treatment free for over two years.”

“When I was first diagnosed with cancer everything felt very out of my control and almost overnight I felt I had all my independence taken away from me. Over the years cancer has undoubtedly knocked my confidence. I’ve now been living with cancer for the past decade, and in some ways I am stronger than ever.”

“It’s changed the shape of my whole life. I feel like I now appreciate things more and try not to sweat the small. Cancer is lonely and even with incredible amounts of support from family and friends, it is still a huge challenge. I don’t want to be the friend that nobody wants to hang out with because they are always feeling negative, so I have tried to keep some things to myself over the past few years. I want to enjoy time with friends focused on other subjects, the ones that ordinary thirty-somethings talk about.”

“The Young Adult cancer charity Trekstock have been a huge help to me. They support young adults who have experience cancer in their twnties and thirties. I have made some wonderful friends through this charity over the years and have been lucky enough to attend some really cool events. In 2018 I hiked the Lake District five peaks to raise money for the charity and will take on another challenge next year for the same amazing cause; walking 26 miles across Hadrian’s Wall in March 2022 accompanied by some of my wonderful friends.”

“I really try not to let cancer define me, not to let it win, and it’s certainly not going to destroy me. When I feel low and depressed its not necessarily one particular thing that I can put my finger on, but a combination of the whole living with cancer package that can sometimes throw me into turmoil.”

“So many questions whirl around in my head. Will I be discharged from Oncology eventually? Will there be more positive defining moments in my life that aren’t illness or cancer related? I’ve outlived my dire prognosis, but will I live to see in another decade or two? I sometimes feel like I’m skating on thin ice. There is a huge guilty feeling that goes alongside trying to move on.”

“But, life is looking very promising. I have an MRI scan soon and all being well I hope to move to yearly scans, which will be a huge step forward. For the past three years I have worked around treatment and am now back to permanent full time work and no treatment, which has been a great step forward, and one I thought would never been possible.”

“Once the rules around the pandemic have eased I hope to see more of family and friends. And, it sounds cliche, but I want to live my life surrounded by those people I care about and also focus on having a good work-life balance. As time has moved forward cancer has been pushed further and further to the back of my mind, so I hope this will continue. One day, I would love to play a more active part in helping those who have been diagnosed.”

“I also hope to live for as long as possible, and I want people to know that there is hope and light at the end of the tunnel, even in the darkest of hours.”

Jolene’s blog is currently under maintenance, but you can read more about her story here and more about the work Trekstock do here.

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