Rebecca’s Story

Rebecca was diagnosed with Ewing’s Sarcoma in her right femur in September 2011, aged 23.

 

I first started noticing pain in my right thigh on New Year’s Day, 2011. I was 22 at the time. I put it down to too much dancing the night before and ignored it. It went away, but then came back a few weeks later. It would last for a week or so and was so bad it often kept me awake at night.

People always asked me to describe what the pain was like and where it was and I could never really explain, other than it was a painful and yet dull ache at the same time, and it felt as though it was somewhere deep in my right thigh. I would later discover that is exactly how one would describe bone pain!

I played a lot of netball and often wore high heels on nights out so whenever I went to the GP about it (twice I think) they would give me painkillers and say I probably just pulled a muscle.

As others have noted in their stories, a lot of GPs will never come across a patient with Ewings, and at my age it was far more likely to be a sports injury than cancer.

I decided to consult a physio to see if they could get rid of the pain. The physio suggested my hips had become unaligned through netball and that was causing the muscles on the right side to be constantly stretched and thus creating little tears all the time. I saw the physio twice and went away feeling positive that maybe now the pain would finally go away.

Obviously it didn’t, and I tried to ignore the pain and took a lot of painkillers for many months.

What made me sure the doctors and physios were wrong was that playing netball had no effect on the pain – if it was there before a match, it was no worse afterwards, and if it wasn’t there before, playing sport did not incite it to come back.

So the diagnosis of a sports injury just didn’t sit right with me.

In August 2011 (after almost 8 months of pain) it was so painful that I went to A&E in the hope that someone would take it seriously. The doctor suggested I be referred for a scan because the pain had been going on for so long. I then saw my GP who had to refer me for NHS physio because they could not refer me directly for a scan. Finally, the physio referred me for an MRI scan of my right thigh. The scan was at the beginning of September 2011 and I remember thinking they would either not find anything or it would be a trapped nerve of some sort. I wasn’t nervous at all going into the scan (in fact I fell asleep for an hour).

Two days later my GP called to say they had found a growth and it was either a malignant tumour or a bone infection.

I went to see Mr Rob Pollock at the London Clinic the following day who took me for an x-ray and said immediately he thought it was Ewing’s.

It all happened very quickly after that; I had a biopsy the following day at The Royal Orthopedic Hospital in Stanmore, and then a terrible week of waiting for a phone call from Mr Pollock. On September 16th 2011 the diagnosis came – I had Ewing’s Sarcoma in my right femur, in the bone and the soft tissue around it.

In a way I was relieved to finally know what was wrong after nine months of agony. I had all the staging tests and luckily there were no metastases.

They reckoned I probably had had Ewings for a couple of years for it to have grown to the size it was and to be causing me that much pain.

I started chemotherapy at T15 at University College Hospital, under the care of oncologist Dr Seddon. I had six cycles of VIDE which entailed staying in the hospital for three nights every three weeks. Of the six cycles I think the first few were alright but cycles 3-6 I was back in with an infection every time. I felt like I lived in hospital! Although, sometimes when I felt like home was a bit too crowded with all my family there (I had been living alone before the diagnosis) I would joke that going into UCH was like going to stay at my apartment in the centre of town. I finished VIDE at the end of January 2012 and had surgery in February 2012. Due to the location of my tumour it was possible to have limb-sparing surgery so I did not have an amputation.

Mr Pollock removed the middle-third of my femur (leaving the knee and hip joints untouched) and replaced it with a titanium rod.

I was amazed that two days later, with the help of the physios, I was able to stand on my leg and be fully weight-bearing. I was in the London Clinic for one week and then was able to go home on crutches. I needed a lot of physio but after a few months was able to walk without crutches, although it is now seven months on and I still have a bit of a limp (which will go in time, I am told).

I then re-commenced chemotherapy and had eight cycles of VAI. I found this much better – I was only in hospital for two nights every three weeks and I did not have any infections. In April I commenced radiotherapy alongside the chemotherapy. I had to go to UCH every day and my right leg became very burnt and sore after a few weeks. I finished radiotherapy at the end of May and chemotherapy at the end of July.

Like Matt, I also wanted to do something that could turn my bad experiences into something positive.

I started writing a (lighthearted) blog called ‘Pimp My Wig’ giving tips and examples of how to accessorise a bald head, in the hope I could reassure and perhaps amuse others battling with hair loss. For me, the idea of going bald was what upset me the most when I was diagnosed – not because i’m ridiculously vain (if I was before I’m certainly not now), but because we’ve all seen too many films with the bald, ailing cancer patient and it made it all that little bit more real and daunting.

It has now been a year since my diagnosis and two months since I finished treatment. I will be having chest and leg scans every two months for a while because sadly Ewing’s has such a high recurrence rate.

I have moved away from home and am loving being independent once again. I’m also back on course to start my legal career next year.

Readjusting into ‘normal’ life hasn’t been as hard as I thought it may be (so far) – I have my friends, family and the amazing people at UCH/London Clinic/LOC to thank for keeping me sane and staying the same old me!

Rebecca’s blog can be found at: http://pimp-my-wig.blogspot.com

An update on Rebecca, who passed away on November 15, 2019, after being told in June 2018 that the illness had returned and was no longer curable.

There had been an earlier recurrence in 2013 which her team at UCLH was able to repulse. Rebecca switched from her advanced law studies to a new career in the wine industry, working for a firm called Bibendum. After her death, Bibendum dedicated a prestigious award to her and paid tribute to her as a rising star of the wine industry.

In July 2017, Rebecca married Chris Stone, and they honeymooned in California. Chris was her rock throughout her ordeals and they seemed to be on track for a wonderful life together. But it was not to be.

Rebecca died at home in north London and a memorial service was held for her at St. Anne’s Church, Highgate West Hill. The church was packed with friends, relatives and colleagues – a tribute to the impact she made on so many people.

During the service, her uncle, David Cowell, read out Rebecca’s last social media post – the most telling tribute of all and which is reproduced here in full:

When I was growing up, Grandmama had two lovely Schnauzer dogs called Spike and Tike. They were complete opposites – Spike would forever be exploring and running around, while Tike was mellow and took his time about things. Spike sadly died far too early and when it happened I said to Grandmama; perhaps he always knew he would die young, and that’s why he packed so much in. Tike lived until a ripe old age and it was clear that he had clung on as long as he possibly could.

In some ways, I suppose I’ve always been more of a Spike than a Tike. Of course there is so much that is good and enviable about Tike being the loving companion my grandmother deserved for so long; I wish I could’ve been that for Chris. But in Spike I see something I’ve always sought to do: living without regrets. And so, not that I’m some sort of deity or prophet, but for what it’s worth: go for that swim. Say yes to one more drink. Apply for that job. Book that holiday. You won’t regret it.

I love you all and wish so much I could be sticking around for longer.