BY TOBY PORTER
A distraught husband is trying to raise £72,000 for his wife’s head and neck cancer treatment because it is not available in the UK.
Mother-of-two Sheena Tay-Schyma, 32, from Tooting, was told on September 25 that she had stage three nasopharynx cancer – after a prolonged period of trying to find out why she was having hearing problems.
But husband Christopher Schyma fears their two daughters will be left without a mother if they cannot raise the cash necessary for her to be treated in Prague, in the Czech Republic, by mid-November.
As well as chemotherapy, she needs Proton Beam radiotherapy, which is not available in England until next year, to treat the carcinoma – a rare form of the disease which also has a huge number of side-effects if treated through chemotherapy and traditional radiotherapy.
He has already collected £14,000 through a JustGiving page and is hoping to have more raised – just through social media.
But the urgency becomes more pressing by the day.
Chris said: “The diagnosis was a bombshell. You immediately think, because it is cancer, that it is terminal. You don’t really understand how that feels until it hits you. It can be overwhelming.
“For Sheena, who is 32 years old, curing the cancer is clearly a priority but her long-term quality of life is also a massive concern, especially as a mother of two young girls, aged four and two.
“Because of where it is, it is hard to treat. Proton therapy is much more targeted than traditional radiotherapy. But it is not scheduled to be available in the UK until, at least, 2018.
“We are caught in a loophole. The NHS will not fund her treatment in Prague – referrals for Proton Therapy treatment abroad are mostly reserved for much younger patients; our health insurance will not cover it because Proton Beam therapy is not currently part of the UK multidisciplinary guidelines; and London will not get a proton centre suitable for Sheena’s treatment until next year.
“This is, regrettably, too late for Sheena. The diagnosis was a bombshell, we are now on a very fast path to undertaking and evaluating immediate treatment options.
“All early studies for Proton Beam therapy point to patients gaining a higher quality of life during and after treatment. For the few patients we have spoken to this certainly rings true.”
The standard UK treatment – IMRT radiotherapy – would have a high probability of long-term complications such as xerostomia, deafness, hypothyroidism, osteo necrosis, cataract, ocular risks, numbness and weakness of the hands, blurred vision and second malignancy.”
Her husband said: “This is clearly not even a choice, Sheena deserves the best option available. The location of the tumour – inside the head – means surgery is simply not an option.
“What scared us most was what might have happened had we not pushed for a diagnosis of her ear problems. The moment we got a diagnosis, things started moving very quickly. Sheena is not the kind to push but I knew things were not right. There are very few cases of nasopharyngeal carcinoma (NPC) in the UK – so doctors just don’t know about it.
“Once diagnosed it frustrated me that the UK system appears to measure a successful outcome as curing the cancer with the long-term side-effects is something you just have to live with. With two young daughters this was not an acceptable outcome for us. You have to avoid letting the treatment control you – you take control of your treatment. We needed to decide what was best for us. You can feel like you are on your own.
“It is not early, but it is not super-late, so it is not terminal. The life expectancy is 62 per cent. That is not great – but it is curable.
“Sheena has great days when she is strong and positive, but other times, especially as her chemotherapy has started here in the UK, you feel overwhelmed by everything.
“But the network of people who have contributed has been incredible. You have to be really switched on to the digital world. I set up the Just Giving page and the response has been amazing through friends, family and colleagues. We also have some people giving £10 to £30 saying ‘We don’t know you but we hope this helps’. When you multiply that by more than a hundred people it has been a game-changer for us.”
Chris has vowed the contributions will not just stop at funding Sheena’s treatment. “I see it as a temporary loan,” he said. “Whatever we raise by the end of the campaign, I will personally match that amount as soon as I can post treatment and pay it forward to Cancer Research UK. We just don’t have that kind of cash available to spend on her treatment now, and I want to give it back in some way.”
Sheena’s treatment would be at the centre where in 2014, five-year-old Ashya King, who had a brain tumour, was taken from hospital in Southampton by his parents, against medical advice. Brett and Naghemeh King said seven months later that their son was free of cancer.