Wendy, 58, an Educational and Child Psychologist from Altrincham was diagnosed with a rare eye cancer in 2017. Her two daughters (India & Bella) are fundraising for her cancer treatment.
After a routine eye exam, Mum was referred to a specialist where she was diagnosed with ocular melanoma, a type of cancer affecting around 6 in 1 million people. A few weeks later she had her right eye removed, followed by radiotherapy and later that year had her prosthetic eye fitted. Late last year we found out her cancer had spread to her liver and there were no NHS treatments available. This was truly devastating news for our family. Unfortunately, like many rare cancers, treatment options are extremely limited and can be extremely hard to access.
Early in 2020, we were given the opportunity to start on a clinical trial for a type of treatment called Chemosaturation Therapy. Although still in clinical trials this therapy has been shown to prolong life in patients with ocular melanoma.
This trial is available at a handful of hospitals over Europe, including two in the UK. In order to go ahead with this trial you have to go through a lengthy screening process. We finally got the news that we were enrolled on the trial and Mum was one of two patients at one of the UK's hospital's starting this trial. She had a procedure mid March which was the start of the trial.
A few days before trial was due to continue we got a call from an NHS Admin staff member to say the final heart pre-scan was cancelled and whatever we did we were not to come into the hospital. Confused, and another three phone calls later, we eventually got through to our specialist nurse who told us the trial was cancelled indefinitely. On Mum's insistence, the following day our consultant who was leading the trial called to tell us that in his hospital and that all over Europe the trial was "Dead in the water". The trial is complex, a wide range of staff are needed and an intensive care bed none of which were available at the hospital at that time. We understood we were in a pandemic and we were not the priority, however, it does not make it any easier to have treatment so abruptly halted. This all happened days before Boris Johnson announced repeatedly there would be 'no impact on cancer treatment' during COVID-19.
We explored all our options (UK and worldwide) and did not give up, but every road we navigated down ended up being a dead end. In the end our best option was to sit and wait for us to pass the peak of the pandemic.
If you're reading this then chances are you probably know Mum. Losing an eye on top of a cancer diagnosis, is a life-changing experience. The way Mum bounced back after losing her eye was truly remarkable and it did not stop her from doing all the things she loved. It has been completely inspiring to see how Mum continues to be the wonderful woman that she is. Her strength, resilience and kindness continues to shine through every bit of adversity. We don’t know how she does it!
Over three months on and lots of sitting, waiting, asking and hoping there is still no indication of this trial being available on the NHS due to the complexity of the trial and NHS capacity issues. Having this treatment on the NHS is not an option at the moment or in the foreseeable future. We have no idea when or if it will be an option. However, very recently we have been given the opportunity to have this same treatment done privately at the other location in the UK.
Unfortunately during lockdown Mum's cancer has progressed and we had to wait to see if Mum would still be eligible to start this treatment. Last week, we finally got the news we'd been waiting for, Mum was still a candidate for the treatment and will be starting in the very near future.
So the reason we're sharing this is because in order to help us fund the treatment we really need help to fundraise a proportion (£100,000) of the overall cost. We're not even sure words could even begin to explain how grateful our family would be for any fundraising efforts or donation contribution no matter how big or small. Please feel free to share this page with anyone who knows Wendy or whomever you think might like to help.
India & Bella
If you have issues donating then please contact [email redacted].uk
Wendy and her family are being advised by Mary Smith, Associate Legal Director from Novum Law, who is an expert on medical law and patient safety.
If you have a media enquiry, please contact Deborah Bartlett, PR Manager at Novum Law on email: [email redacted] or telephone: 01666 838850 / 07956 198486.
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