‘There’s been no regrowth but I’m not in remission and there is no cure – and it’s cost around £100,000 for treatment so far’
Louise Jensen, who has remortgaged her home to pay for cancer treatment not available on the NHS(Image: Louise Jensen)
A Hull woman battling terminal brain cancer has revealed how she has remortgaged her house in her bid to pay the huge bill for potentially life-extending treatment not available on the NHS.
It is now nine months since Louise Jensen received the news that she had a massive Grade 4 Glioblastoma, leaving her with a life expectancy of one to two years. Her life was turned upside down when a series of excruciating headaches led to the earth-shattering diagnosis. Hours after scans showed the huge tumour in her brain on an MRI scan, Louise was called by Hull Royal Infirmary urging her to get in touch as soon as possible.
Since then, Louise, 40, has struggled to stay positive, but her partner of nine years Adam Philipson and best friend Becky Blount have rallied round, researching all manner of potential treatments she could combine with NHS therapies. A GoFundMe campaign was set in motion to raise £80,000 needed for a vaccine treatment pioneered in Germany, which could give her between five and 20 years more with her family and loved ones.
So far, around £30,000 has been raised through the fundraiser, helping towards the high costs for treatments Louise is having on top of her NHS course of chemotherapy and radiotherapy. However, while Louise is eternally grateful that friends, family and the community have dug deep to raise money, she is also racing against the clock to get treatment.
So she and Adam remortgaged their home, while other family members have given their life savings, so that Louise could journey to Germany to start the treatment as soon as possible. She has now been to Germany on four occasions to receive the vaccine, with all the costs so far topping at least £100,000 – and there will be more to pay out on future visits too.
As well as needing money just to pay for the vaccines, she and Adam are also meeting all the costs for travel, accommodation and meals on each expensive trip. Money aside, there is currently no sign of the tumour in her brain, which is, on the surface, good news. However, Louise says she is under no illusion that the tumour will return.
“There’s no sign of cancer in my scans at all at the moment, and there’s been no regrowth. But I’m not in remission and there is no cure,” she said.
“It’s really hard to kind of get your head around. It will return – we just don’t know when.
“It could be the chemo. It might have been the radiation. It could have been a bit of both, it could have been the German treatment. I’m not sure, to be honest, but either way, something is helping, and obviously, I couldn’t have done any of it without the money that was very kindly raised.”
CeGat German Oncology Centre, based in Tübingen, Germany, took a sample of Louise’s tumour from Hull Royal Infirmary to analyse it in depth. After analysing its weaknesses, at an initial cost of £20,000, peptide vaccines have been produced at a cost of another £60,000. The vaccines are injected into Louise’s stomach to create an immune response, firing those weaknesses at any sign of the tumour.
And once in her body it is hoped that, if any part of the cancer returns, the vaccines will help her body to identify it, attack it and destroy it. Ultimately, while it doesn’t cure the cancer, it’s hoped to keep it at bay to give her a longer life-span than her current, devastatingly short life expectancy.
So, for the next year, Louise, a former operating theatre practitioner at Hull Royal Infirmary who used to run her own business LJ Healthcare, will be making many more trips to Germany to continue keeping the cancer at bay.
She said: “We’ve probably spent about £100,000 so far and we’ve still got more treatments to do, more travelling to do. It’s 11 trips to Germany for this vaccine, so that’s 11 times hotels, trains and flights, over a year’s period, so it’s going to cost much more than the actual treatment cost.
“So we really want to keep up the fundraising through GoFundMe. We’ve had to remortgage the house because we couldn’t wait, and other family members have dug into their life savings too.”
Louise readily admits the devastating mental toll the last nine months have taken on her, and ability to stay positive. She said: “I’m still really depressed and I think, people don’t understand that with cancer, the after effects.
“You’ve been given a prognosis or diagnosis. You’re having to try and get on with your life. But it will never leave you.
“And that’s the bit I’m really struggling with at the moment. Even counselling didn’t help and I was feeling so low, so down – and I still am – but I’ve been starting taking some medication. I was in bed all the time, but I can now go out a little bit – we’ve just been shopping – so they are starting to take the edge off a little bit.”
Next month will see a major charity event hopefully deliver a huge boost for Louise. She is set to be one of the recipients of funds raised from the Ring of Hope charity boxing match taking place at the Doubletree Hilton in Hull on June 20. The first Ring of Hope event raised more than £100,000 for charity, and the organisers at the Zenith Foundation hope to raise £65,000 for Louise, with any additional funds raised set to go to other causes.
Organisers have arranged a number of sponsorship opportunities for the charity clash, and it is understood that a few tables still remain and can be booked by emailing calum@zdglimited.com or danielle@zdglimited.com.
To make a donation visit Louise’s fundraising page here.
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