‘No matter what I have, there is no cure – all it will do is buy me time, but it could be a lot more time’
Family and friends of a Hull woman diagnosed with terminal brain cancer have launched a fundraiser to help her get to Europe for potentially life-extending treatment. Earlier this summer, Louise Jensen, 39, and her partner of eight years Adam Philipson had been enjoying the sweltering summer and planning a holiday together.
Those plans, however, were shattered in an instant when headaches led to a devastating diagnosis, leaving her facing a life expectancy of just one to two years. Hours after discovering a huge tumour in her brain on an MRI scan, Louise was called by Hull Royal Infirmary telling her they needed to see her as soon as possible.
Following surgery, a biopsy confirmed it to be a Grade 4 Glioblastoma, one of the most aggressive forms of brain cancer which, with treatment, has an average survival rate of 12 months to 18 months, while the five-year survival rate is around 5%.
Now, with one week left to go in her gruelling weekly chemotherapy and radiotherapy treatment course, Louise has told Hull Live how her “amazing” friends are giving her hope of a longer future, by launching a GoFundMe campaign to raise the £80,000 needed to send her to Germany, where a vaccine treatment could give her between five and 20 years more with her loved ones.
She said: “No matter what I have, there is no cure – all it will do is buy me time. But it could buy me a lot of time if it works. I don’t expect to be able to raise all the money. What we’ve got would help and I’ll figure out the rest.
“I’m just too depressed at the minute to do anything. So, so depressed. I’ve got another week of treatment then I think I need to pull my Big Girl Pants on and try to start going out and doing stuff, and enjoy what I’ve got. I think I’m still coming to terms with it. I had plans – but I’m now thinking I turn 40 on November 5 and I might not make it to 42.”
It was July this year that Louise initially went to hospital after suffering from left-side migraines. She was initially given anti-inflammatories but when the pain persisted she went back the next day and was then booked in for an MRI scan, three weeks later.
She recalled: “I’m still quite physically fit and to look at me you wouldn’t think anything was different. But I had left-sided headed headaches that were more than normal headaches, they were migraines.
“I’m normally really good with English too and spelling, but I’d pick up a book or magazine and couldn’t read certain words. It was weird. I knew something wasn’t right.
“I had to wait three weeks for the MRI, and it was on the night that I’d had it that I got a phone call saying ‘something isn’t right, we need you in urgently’. Straight away I’m thinking, ‘have I got a tumour?’.
“I still didn’t think the worst, even after seeing the image of the tumour, I just wanted it out of my head.”
On August 4, Louise underwent surgery during which she was awake for the whole operation, under local anaesthetic, and a biopsy of the 4.3cm x 3.6cm tumour days later confirmed it was a Grade 4 Glioblastoma. A treatment plan was set in motion for Louise – who had to give up work as well as her driver’s licence – which has involved six weeks of chemotherapy and radiotherapy.
A former operating theatre practitioner at Hull Royal Infirmary, she had been running her own business, LJ Healthcare, as a foot health practitioner for the last two years. Meanwhile, partner Adam has explored every avenue possible for alternative treatments, while also putting Louise on a special diet free from any unnatural sugars, processed foods and salts.
He had read research suggesting cancer “likes” sugars, so she now lives on organic fruit, fresh healthy meats, and lots of green and colourful organic veg, as well as supplements sourced from credible research papers linked to brain cancer, such as Turkey Tail Mushrooms, and Boswellia. Adam’s research also led to the discovery of the treatment available in Germany.
CeGat German Oncology Centre in Tübingen is currently taking a sample of Louise’s tumour from Hull Royal Infirmary to analyse it in depth. They study its weaknesses, at an initial cost of £20,000, and then it costs another £60,000 to have peptide vaccines made to fire those weaknesses at the tumour.
It will take five months to create the vaccine tailored to attack her tumour. And 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.
Now Louise, her friends and family are doing everything they can to raise the funds needed to get her to Germany. And alongside dealing with the physical impacts of the diagnosis, Louise is also caught up in a seemingly endless, helpless mental battle.
She is currently splitting her time between partner Adam and their two cats Dave and Pob, and staying with her mum and step-dad Andrea Jensen and Dave Spence, to spend as much time with loved ones as possible.
She said: “I’m not dealing with the diagnosis at all. I may seem okay when I’m on the phone to people but I’m in bed all the time. I’m so depressed. I cry every day and every day I’m in bed. That’s why my only hope really is to go to Germany with the money we raised.
“I was quite sick at first with the chemotherapy pills, which I can take at home. The radiotherapy has given me some hair loss too.
“I have to go to Castle Hill Library and when you go in and see all these poorly patients you feel for them – but then you realise that you’re one of them. It’s a reminder every time you go of what you’ve got.
“My partner has been an absolute rock. He’s the one doing all the research while it’s me doing all the moping and crying.
“But he’s right when he says we need to deal with this. He did the research, and I’m now in contact with a gentleman who’s getting the CeGaT treatment as well as being in support groups on social media – and in some cases it’s given people an extra 20 years of life.
“The peptide vaccine treatment is just not available in the UK. Other countries offer other things. Here it’s standard of care, chemotherapy, which for brain cancer is a pill, and radiotherapy. It’s so strict with protocols and NICE guidelines. Whereas in Germany and elsewhere they’ll say ‘there’s no guarantee but we’ve had good results, this is what we aim to do’. I just hope it works.”
“My friends have been amazing and I’ve been overwhelmed by the amount they’ve raised – more than £22,000. My friend Becky Brount created the GoFundMe page and she’s also organising a Laugh for Lou comedy night, together with a live band, at the Good Fellowship pub in Hull at the end of January.
She added: “I just want to want to thank everyone who’s donated so far. It is overwhelming how many people come forward. Maybe if I was older, 70 or 80, it would be easier, but I’m 39 it’s too young.
“You life changes in an instant and it’s hard to get your head around that.”
To make a donation visit Louise’s fundraising page here.
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