‘They’re Ending My Life.’ : Terminally Ill Mum Fighting Cancer Refused Second Bone Marrow Transplant On NHS
A mum-of-two fighting leukaemia has been refused a second bone marrow transplant due to new NHS rules – leaving her with less than a year to live.
Sasha Jones, 34, was diagnosed with leukaemia three years ago, but a transplant failed and has left her battling the NHS for a chance to extend her life.
She first noticed something was wrong in March 2015, when she started to feel tired all the time, and noticed her skin bruised easily.
She also had symptoms similar to dementia because her brain wasn’t getting enough healthy blood.
After telling her GP, Sasha was rushed to Queen Elizabeth Hospital in Woolwich, south east London, for blood tests which revealed she had 50 per cent leukaemia in her blood.
Over the following six weeks, Sasha stayed in hospital for four rounds of chemotherapy, and had a bone marrow transplant in August 2015.
The transplant was initially successful, but just less than a year later, Sasha was told she had relapsed and the bone marrow had failed.
It was then she found out the NHS no longer funded second marrow transplants.
Sasha said: “When I was first diagnosed, they didn’t tell me I wouldn’t be able to have further transplants.
“The new rules say they will fund the second transplant if the first fails within a year, but they’ve told me they won’t do it.
“I’m going to appeal the decision again, but if they keep dragging it out, I won’t have the chance to get another transplant and live.
“I don’t have any options now – if I relapse now, chemo might make me too weak for another transplant and I wouldn’t be able to get one even if my appeal was successful.
“The cancer could come back within eight months, and even when I am in remission
“I’ll never be cured – if there are less than five per cent cells, they hide and doctors can’t tell if it’s there or not.
“I could still have the transplant and die, because there’s only a 40 per cent chance of survival and living up to give years, but lots of people have surpassed that.
“The transplant would give me another chance at life – I could live for another 20 to 50 years – but without it, I’d be dead within two.
“It’s my only chance of survival.”
Sasha, from Thamesmead, south east London, is hoping the NHS will change their minds after she lodged an appeal.
She has still not received a reason for her second transplant being rejected, but has been told her donor has been taken off the register.
She added: “I was put forward for a trial using my donor’s cells but every option has been wiped out.
“I don’t know why my donor has been taken off the register because it’s confidential, but leads me to believe there’s something wrong with the marrow I’ve already had.
“Everyone else gets a second chance and I can’t have it, they’re ending my life.”
Childhood sweetheart husband Lloyd, who Sasha has been with for 20 years, now faces raising daughter Katia, 13, and son LJ, eight, without a mum.
She said: “My husband wouldn’t show me how he feels inside about my illness, but for a man to know his wife is going to die is a terrible feeling to have.
“We don’t know when it’s going to happen either – I could die quite soon – and NHS England don’t realise the stress this causes behind the scenes to someone’s family.
“It ruined our Christmas – I’ve been waiting for a decision about my appeal for over a month.
“I feel cheated – my doctors put me forward for second transplant because they think I could have another chance at life, but the NHS are still refusing.
“It’s extremely infuriating and I don’t think it’s fair.
“I don’t even know who the people are that are making the decisions on my life – they’re not specialists, they’re not equipped enough to make this decision.”
Sasha says the stress of her illness has also taken a toll mentally, heightening her major OCD and anxiety.
She has been told she is ‘not ill enough’ to qualify for some benefits, including mobility help, after an assessment ruled she was capable of moving around on her own.
But she says her husband has to carry her up the 60 steps to their home, leaving him exhausted and her in tears.
She added: “They’ve told me I’m not ill enough for mobility help even though I have to be accompanied everywhere.
“My husband has to pull me up the stairs – it’s a nightmare – but I lost my appeal because they don’t feel like I deserve help.
“It’s a nightmare, and I don’t know how the stress doesn’t kill people when you have to deal with this on top of having cancer.
“It’s driving me mental.”
Sasha has now been left with just a 20 per cent chance of living up to two years without a second transplant.
She has looked into having treatment privately, but with the cheapest option costing over £120,000, she has been trying to crowdfund the treatment.
Sasha added: “My friends and family have given me such overwhelming support, it’s so humbling.
“They really have restored my faith in humanity, everyone has been so generous and I can’t thank them enough.
“We’ve had at least four or five fundraising charity nights, craft fairs and concerts – I’m so grateful.
“I’m truly blessed to have the people around me that I do.”