Melanie Nixon from Hampshire has lived with a rare form of Non-Hodgkin lymphoma for nearly 20 years and she owes her life to a trial drug she was able to access at University Hospital Southampton NHS Foundation Trust. On International Women’s Day 2021 we are sharing Melanie’s remarkable story in her own words to highlight the importance of clinical trials and why networks like the Cure Leukaemia funded Trials Acceleration Programme (TAP) are so vital to give hope to the 38,000 people diagnosed with a form of blood cancer in the UK each year.
Melanie's Story - 2002
I had no idea I had cancer. I had no pain, just a feeling that I had a piece of driftwood in my tummy and it moved from side to side as I turned over in the night.
I made the appropriate Doctor’s appointment and immediately he requested a blood test at the Norfolk and Norwich University Hospitals NHS Foundation Trust.
I waited two weeks before I was given an appointment and then attended the hospital. There were seven ladies in the oncologist’s room; two oncologist doctors, specialist nurses and training nurses, it was rather a lot to take in.
I was then calmly told that I had a form of Non-Hodgkin lymphoma. I really did not know what they were talking about! As soon as I was told it was a form of blood “cancer” I was petrified and wanted to run out of the hospital as quickly as possible.
After the shock and disbelief followed by acceptance and coming to terms with the situation the discussion of treatment options followed. My oncologist said the tumour was large and I needed a splenectomy immediately.
Alongside my treatment I decided I wanted to research as best I could on nutrition to identify the food I should try to eat to combat the disease. I started juicing fresh fruit and vegetables – which I still do today. I also looked into antioxidants in food and how they can help. After a while I was put on a three-monthly check-ups at the hospital. This continued for another five years.
I felt unwell again with symptoms I call B.B.C; bruising, breathlessness and cramp. When these returned, I went back to the Doctor, and yes, the cancer was back. I was bruising a lot, I felt very breathless going upstairs or walking any distance and I suffered with terrific cramp!
My initial reaction was disbelief – no not me – it can’t be… So I revisited my juicing, began seeing a cancer dietician and concentrated on eating more fruit and vegetables. It was an incredibly stressful time for me.
To take my mind off my illness I became involved with the National Trust and did a lot of volunteering work for worldwide guiding, this included making 100lb of blackberry and apple jam!
After intravenous chemotherapy and a year of being very unwell gradually I came through this period of my illness.
Sadly marriage was really breaking down at this time and I was ready to give up. The ‘B.B.C.’ symptoms were back and I remember thinking ‘can I survive this for the third time!’
It was horrific and had transformed to be more aggressive. This meant intensive chemotherapy, lots of sickness, lots of staying in bed, eating very little – I was really seriously ill. I had two anaphylactic shocks during chemotherapy sessions, I lost all my hair, and was told I may not get through this one. I was given 50/50 chance.
My family and close friends rallied around me, Tricia came over from Spain and stayed, Trish from Goring came up and stayed as well, and my friends in Norfolk; Andy, Pat and many more were cooking nutritious soups for me. My husband John did nothing!
At the time, I did not want to eat or drink (I had lost my taste – everything tasted like cardboard) and I felt sick all the time, but and it was a big BUT! I was given books about the bees, in particular, ‘The Seven Health Secrets from the Hive’ and ‘The Food Doctor’ and I found these to be invaluable to learn from. I realised that if I really wanted to help myself it might be worth looking at some complimentary help, which I discussed with my haematologist. “If you think it will help – we have no objection” was their view.
I left my husband John and moved to Goring-on-Thames. Slowly I worked on my health with a little fresh air each day and juicing all dark green vegetables. Thankfully, I was able to move on and after Mummy died, I moved to Stoke, next to St. Mary Bourne in Hampshire, just 12 miles from my sons Robert and Richard. I felt I had come home again.
I started to grow a small vegetable patch in the garden. I found this very therapeutic and I really started to enjoy gardening, cooking and I joined “Walk for Health” in St. Mary Bourne. I now help others locally with small or no gardens to plant, cook and eat their own vegetables especially those foods full of antioxidants. I help with cooking for “The Lunch” which is a group in St. Mary Bourne where we cook each month for the villagers, sometimes for as many as 100 at a time. The Christmas Lunch is always extremely well attended, and when I make the soups, I ensure they are very nutritious.
I was presented to Princess Benedikte of Denmark in recognition of my fundraising efforts in 2011.
2017 to the present day
For several years after I had moved from Norfolk, I still continued with my six-monthly check-up visits by driving the four hours from Hampshire to Norfolk, staying with a friend overnight and coming back the next day. As I was no longer having chemotherapy it was the right time to change to a local consultant in Southampton. The journey to the hospital would be quicker and should the cancer return, it could not be handled by Norfolk any longer as I had moved out of the area.
During my treatment in Norfolk, I had made many friends amongst the nurses who treated me there so transferring was difficult and remain very grateful to them for the care I received.
It was in 2017 that my eldest son Robert was involved in a head on car accident and he was airlifted to University Hospital Southampton NHS Foundation Trust. Thankfully, he survived the crash but he was in a very bad state. This was unbelievably stressful, having to travel to the hospital every day and then taking over his tiling company which he was unable to manage. This lasted for six months.
In 2018, I noticed a lump on my head, and on my next check-up mentioned it to my oncologist. She immediately booked me for a scan which confirmed the cancer had returned. Within a few weeks knowing it may be cancer and I would possibly require more chemotherapy I decided to get a dental appointment. The dentist noticed lumps in my mouth. The following Monday I had an appointment at University Hospital Southampton, so it was arranged for me to call in at the dentist surgery first, have an x-ray and take the x-ray photos with me to my check-up appointment that afternoon.
As soon as the consultant saw the lumps in my mouth and results of the head scan, we knew the cancer was back. I was in complete shock! I remember thinking ‘please no not me again, I cannot go through this all again!’ The B.B.C. symptoms (breathlessness, bruising and cramp) had returned, and I had to wait to see what treatment was to be given to me.
The next hospital visit I shall never, ever forget. I went with a friend for support – what was I going to be offered I thought? I was then told that I could no longer have chemotherapy and that it wouldn’t work.
Then I was told, “there may be one other way – a trial drug.” My instant response was ‘no not for me, I don’t want to be a guinea pig and I don’t know what was in store.’ But my consultant continued “Melanie, this the only alternative we can offer, please think about it”. There are only between 30 and 40 people worldwide with the strain of cancer that you have and just two people in England, so think about it, please”.
Within two weeks I was on the trial drug, a new orally active PI3 kinase inhibitor. I would be on the trial drug for 96 weeks, and I was worried about any side effects. My consultant discussed the possible side effects and explained that by consenting to this trial, this would be beneficial not only to me but for all patients who had this strain of cancer or maybe even other cancers.
I have spent the last 20 years researching foods which are high in antioxidants, whole foods, juicing of fruit and vegetables and suitable supplements which complement the orthodox treatment of cancer. As a result of hours, days and years of extensive research it has been my commitment to try out foods and develop my own recipes, which will help my body maximise the effectiveness of the treatment available.
My commitment has been to research and developing my own recipes, growing as many vegetables as I can in my small garden and drink the required two and half litres of water a day.
Following this method of being mindful of what we put into our mouths I am keeping myself as well as I can, and I have an enormous feeling of wellbeing – which has been so valuable during this pandemic. This positive mindset has complimented all that I do alongside the incredible lifesaving trial drug offered to me by the team to which I owe my life.
Thanks for reading my story,
Melanie’s remarkable story of multiple treatments for blood cancer highlights the vital importance of clinical trials. Cure Leukaemia provides funding to University Hospital Southampton for a specialist research nurse so that more patients can access clinical trials delivered through the national Trials Acceleration Programme (TAP). Without sustained funding for Cure Leukaemia, this network will not be able to continue delivering trials and patients like Melanie will miss out on accessing potentially lifesaving treatments. To make a donation to support the work of the haematology team at University Hospital Southampton, click HERE.
How funds raised for Cure Leukaemia help save lives