Meet Raelene…

Raelene, Uterine sarcoma

What were you diagnosed with, and when?

In April 2005, at 23, I was diagnosed with a uterine stromal sarcoma. Nearly 10 years later, in October 2014, I had another tumour of exactly the same type of cancer in my abdominal muscle.

How did you find out you had cancer?

The first time, it was after surgery to remove what my doctor had hoped was a fibroid. The second time, I felt the tumour under my skin in my abdomen and after surgery testing, they confirmed that it was cancer.

What did you think and feel when you were diagnosed?

The first time: shocked and fearful. I was only 23 and really healthy, with no history of cancer in my family. I was the third and youngest woman in South Africa to be diagnosed with this type of cancer. Looking back, I think I also felt targeted, by whom who knows, but I felt it. The second time: shocked and fearful! I was planning on having a “10 years’ cancer-free” party! I spent so long focused on being well that I didn’t allow the possibility of the cancer coming back to enter my mind. Then BOOM! I actually had a panic attack when my consultant told me that he thought that the growth was highly likely to be cancerous and that I needed surgery.

How did the people around you react?

The first time: my family and my boyfriend (now my husband) were incredibly supportive and kind. Friends were a real mixed bag: some were great but most were awful – they either avoided me or pretended nothing had happened. I think that at that age most people just don’t have the life skills to deal with this kind of trauma.

The second time: my husband was amazing. Friends were supportive and lovely – I’d learnt my lesson about who you let into your life. My family were great but it was entirely different because they were all in South Africa and we were in the UK. I think I managed them and their fears much more than the first time!

What treatment did you have?

The first time, I had a hysterectomy. The second time, I had surgery to remove the tumour and a chunk of muscle around it.

How did you feel through treatment?

The surgery was very quick and I recovered quickly both times. In both cases, I was relieved to have the tumours out of my body!

What happened after treatment finished?

The physical healing after surgery was the easy part – the emotional and mental recovery has been a lot longer! Considering that my physical recovery was so quick, most people around me thought that I was, or should be, ‘back to normal’ which also made it difficult. It was tough dealing with the consequences of not being able to carry a baby and the effect of that on my relationships with my husband, parents, siblings, in-laws and friends. Even strangers have an opinion on my ability to procreate! I’ve had to learn to deal with anxiety and panic attacks, because suddenly anything out of the ordinary felt like it could be something killer – e.g. I truly thought that I was having a heart attack when it was indigestion. Suddenly all things bad and unlikely were possible. My husband and I lost a lot of friends. I had just started working at a large audit firm in Johannesburg and it was incredibly isolating being in a group of my peers who I no longer felt I had anything in common with, as my whole life perspective had changed.

How did you get involved with Shine?

After the second tumour and I had a Deep Vein Thrombosis scare, I went to the Mulberry Centre at West Middlesex hospital and a lovely woman gave me a Shine pamphlet, so I went along to a drinks evening.

What difference has Shine made to you?

Shine has changed my life. I have met so many wonderful people and have made incredible friends. I’m also a Trustee! I am much more confident now – previously I was always weary of talking about my health and cancer experience to avoid judgement. But now I truly don’t care what other people think about me. I love myself as I am.

How do you feel now about your experiences?

They will always be tough experiences. But I am content to be where I am now.

If you could give one piece of advice to yourself before your diagnosis, what would it be?

Comparison is the thief of joy.

Update – April 2020

When I was originally asked for an update it would have read as follows:

“Since writing my first personal experience for Shine in 2017 I have made some positive life changes. I became a yoga teacher and teach a weekly community class. I changed jobs and now work in a place where I believe that through my work I make a contribution to improving people’s lives in businesses around the world. I believe I am looking after my health and living the best life that I can, while questioning how best to deal with stress at work and how not to let my job take over my life.”

Fast forward to now, five months after that request…Five years after the last tumour another one came about. It was picked up in my routine six-monthly MRI in November 2019 and I had surgery in February 2020 to have it removed.

A second recurrence has been a game changer for me. I accepted the first tumour as an incredibly unlucky one-off  – “some naughty cells got caught in my scar”. The second recurrence makes me think that I will never be able to draw a line under my cancer experience.

I am getting my head around this and exploring what changes I need to make to lead the healthiest and happiest life that I can… Again. For a start, I have decided that it’s not worth letting a job take over my life and that limiting stress as much as possible is the way forward.

The one thing that stands out for me this cancer-time round is this: this experience has been very different from the other two because this time I have had my Shine-y friends with me. From the “we’ve picked something up in your latest scan” news to the present, my husband and I have had trusted, caring, kind, understanding, wise friends in our corner and this fills my heart with gratitude and joy.