Help fundraise for lifesaving treatment not on NHS

Our friend and colleague, Rhiannon, was diagnosed with an aggressive form of bowel cancer in September 2022. Stats will tell you that fewer than 10% of people survive a stage 4 diagnosis and, with the aggressive BRAF mutation Rhiannon has, that figure falls even further. The diagnosis came as a total shock to Rhiannon and her family - she had just turned 39, had no family history and lived a busy healthy life as a mother of 3 and finance broker. The only potential red flag was exhaustion but Rhiannon and her family put that down to the pressures of breastfeeding a young baby and the sleepless nights, there were no other recognisable symptoms. It was only when admitted to hospital with suspected appendicitis after a night of intense pain that the tumour was found. Sadly we then discovered that there were also tumours in her liver and lymph nodes meaning that the cancer was already at stage 4.

The only recognised chance at cure is surgery however, because the position of the liver lesions, surgery is currently considered too dangerous making Rhiannon inoperable. We have supported Rhiannon through a tough chemotherapy cycle which she responded amazingly to but it was not enough to reduce the eliminate the liver lesions. In March 2023 we were told that surgery here is no longer a possibility. Options in the UK are now limited. Our incredible NHS is providing a targeted treatment that is expected to extend life expectancy but no-one knows by how long. It is working for now but could stop working at any time. Some people see only a few months of progress followed by rapid deterioration.

We have not been able to accept that Rhiannon's life can be cut so incredibly short. After conducting mass amounts of research, connecting with other cancer survivors and reaching out to medical professionals both internationally and here in the UK we found that there are other treatments available. In combination with dietary and lifestyle changes, this led Rhiannon to Stuttgart in Germany to meet with an oncologist who believes there is hope - by attacking the tumours on a number of different fronts it is hoped Rhiannon can become operable meaning a chance of cure. On the 20th March Rhiannon boarded a flight to begin treatment in Frankfurt.

The treatment schedule, in combination with fortnightly infusions here in the UK, is intense. At some points it involves a flight or procedure every week for weeks at a time. And yet, so far, Rhiannon is able to live a normal life. Outside of treatment recovery she feels great and is still working, still mothering, still active with volunteer work. It can not be overstated what an achievement this is coming up to almost 12 months after a stage 4 BRAF diagnosis. We do not have scan results as yet but can say that blood work shows a huge reduction in CEA numbers, they are currently lower than they ever have been - even lower than after the 6 rounds of chemo. This, in combination with how Rhiannon feels day to day, gives us hope that the treatments are working.

Friends and family have been asking how they can help since the beginning of this journey and this is how. So far Rhiannon and have family have found almost £60,000 which we had hoped would be enough to get to an operable position. It now looks as if we will need to repeat the last set of treatments and also add in another drug called Avastin at an expected cost of £2,000 per cycle. Avastin is recognised as a promising treatment but is not available on the NHS even though there are many other national health systems that do fund it. The funds from this fundraiser will pay for Avastin, a further round of Dendritic Cell Vaccinations, Oncology bills and TACE procedures as required. Amazingly we have had over £4,000 in private donations also which has meant we can reduce our target amount.

A message from Rhiannon:

Firstly I want to say thank you so much to everyone who has donated anything to my fundraiser. Any amount makes a difference and I am grateful for every penny that comes in. I have been overwhelmed by the kindness and generosity of my friends, family and colleagues.

Sadly my situation is not unique, we all know someone who has been impacted by cancer and not everyone is as fortunate as I have been to access alternative treatments. I appreciate every single extra second that I am granted with my family, my children, my loved ones - it is desperately sad that stage 4 cancer patients do not easily have access to treatments that could just be lifesaving, especially when many of us find ourselves with this shocking diagnosis early in life and through no fault of our own. The truth is there is more available to us than our health system can offer and I am determined to make people aware that there are other options out there.....cancer is highly individualized, even if my outcome is not what we are hoping, the same treatments could be curative for someone else. I want to do so much more but for now I am writing about my experience and updating instagram - @fivefamilystays - to encourage others in a similar position to look at alternatives and never give up hope.

Please do like, share and come along for the journey, however it may go. I can not thank you enough for your support.