Sarah and James Read on their wedding day

Sarah and James were just starting their life together but sarcoma cancer changed their plans. The couple met in university and were together for twelve years. Sarah died aged 31 in 2018.

In this interview, James talks about the impact of sarcoma on their young lives and his motivation for the future.

Transcript

Hello,  my name is James, and my wife, Sarah, was diagnosed with sarcoma in 2015.

She underwent treatment including chemotherapy, extensive pelvic surgery and radiotherapy.

Sarah and I got married at 28 and around that time a lot of our friends were getting married as well. Some of our friends had had children and were planning children and that was all very isolating, because when they were planning families, we were planning treatment and undergoing all the uncertainty around treatment and what our future would look like.

We were very aware of the stats around sarcoma as well and that was never far from our minds. We were very aware that the prognosis was likely to not be good. But initially, treatment went quite well. There was a genuine reason to be positive and be hopeful, but we were always aware of the the stats, the recurrence rates and the fact that a lot of people don't survive five years, so there was always something that was on our mind. But I'd hoped that we would fall into the other 50%.

Going through this was difficult for the whole family really. At a certain point, she could say that things would be okay in terms of becoming immobile because you could see that there were goals that she was striving to achieve. And she was achieving goals, and was able to set new ones.

It got a lot more difficult when she had the recurrence because you couldn't give the same reassurances or the assurances as you could before that everything would be okay because ultimately, things would get worse. And that was probably the most difficult... probably in the last few months of her life.

More so because on chemotherapy, on first-line chemotherapy, the first time she had treatment, she'd feel bad but you could say 'Hey, you know at this point of the cycle you're not gonna feel very well. By the end of the week hopefully you're going to feel a bit better and next week we're gonna see some things together.

But as treatment for the recurrence went on and we had less and less options and ultimately she came off treatment.

If she had a cough, we couldn't say that it would be nothing, that it wasn't going to be the tumour growing. Whereas before you could say 'Oh, it could be a cough because it's winter and it could be a cold’. But I couldn't honestly say that to her as things got worse.

There are lots of people we've met who have been in a really similar position... Everyone thinks our story is really shocking but actually it's not as uncommon as people would think. A lot of the people that were having treatment around the same time as Sarah, with a similar age or younger, a lot of them had outcomes the same as Sarah and during Sarah's treatment as well...

You kind of feel a connection with some of these people, but at the same time you see what how things have panned out for them and it's quite hard to... We found out through certain channels that the treatment hadn't worked for them and they'd passed away.

There was one patient that Sarah didn't know had passed away and it was really difficult to decide whether to tell her or not, knowing that it would really upset her. The other patient that we knew from around the hospital, she passed away and Sarah found out and it obviously upset her.

And when you hear about the stats, you can separate yourself from it to a certain extent, but when you've got people under the same oncology team who things haven't worked out for, it is really difficult to get your head around mentally.

A lot of the goals for the campaign and the work our family have been inspired to try to get involved with have quite similar aims and goals, so for example the awareness is important to us so people understand about it and it is recognised as a cancer in its own right rather than just being a 'rare cancer' and in my mind hopefully that awareness would mean more people want to research about it, and it gets more focus and then the research then leads to better treatments, more effective treatments and ultimately giving people diagnosed now more chance of having successful outcomes and that's something that is important to us and why we want to do what we can for the charity.

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Sarah Read was diagnosed with leiomyosarcoma in June 2015 aged 28. James, Sarah and their family and friends have been powerful supporters in terms of fundraising and raising awareness of sarcoma cancer