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John Chisnall

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John’s family have very kindly told his moving story and we are grateful for the opportunity to share a very small part of John’s life.

However difficult and painful it is to tell John’s story, we also felt it was important to write down about John’s journey with this cruel disease, which sadly took his life on 18 August 2013.

John was probably one of the most positive, energetic and dynamic people you could ever meet, he never kept still and he loved life. He was successful in his business and devoted a lot of his time out of work into his hobby of triathlons. He entered many Iron Man competitions in the US and Europe and he was very passionate about them.

John was one of six and was the eldest of the Chisnall clan; he took his role as big brother very seriously and was very supportive and close to his siblings. Two of his brothers worked closely with him in their businesses. He was in a long term relationship and he had three children and two step children and he was a loving and devoted father to all of them.

We can honestly say that we have never known John to be ill or off work sick, in John’s eyes, if you ate healthily and exercised, you would keep well, it was not unusual for him to say, ‘I never get a cold!’

All this changed in May 2012, when John confessed he wasn’t feeling too well, we had all noticed that he was training less and had lost weight, however, he explained that he had been having stomach issues and had been referred to the hospital for tests. The tests were inconclusive; the Consultant ordered an ultrasound of his stomach which showed an abnormal liver and he was then referred for a ct scan and was told the devastating news that there were tumours on his liver. This is when our world started to change.

We were all terrified, we knew that it wasn’t looking good, however we tried to stay strong and wait for the biopsy results, the three weeks wait was unbearable, we were all petrified but John remained positive to us; he always wanted to protect us all.

Unfortunately the biopsy showed malignant melanoma, John’s liver was scattered with tumours and also an MRI had confirmed two brain metastases. We were all in shock – never could we have predicted it was Melanoma (we knew very little about this disease at that point).

We cannot put into words the pain, sadness and the emotion we were all feeling for John to receive these results. Not only did he receive the news that he had an aggressive cancer but that it was incurable and he was unlikely to live to Christmas. Once again, he was so brave and strong and determined to fight.

At this point, they did not know where John’s primary was, there was no mole, he was a red head with fair skin but there was no sign of where the melanoma started. A few days after receiving his diagnosis it became apparent that he had a tumour in his anus. This was now believed to be his primary, another blow, it was now likely that he had mucosal melanoma, a more aggressive form.

John was never going to accept his prognosis, he was determined to fight, he never wanted to hear the negative stuff, his plan was to get his head down and soldier on with his treatment. The trouble was, there wasn’t really any treatment options, he was offered chemotherapy but at the most this could buy him a little time.

Our brother Mark researched tirelessly for treatment options in the UK and abroad. After lots of opinions and conversations with treatment centres abroad, John travelled to the Sheba Centre in Israel and was eventually, after many tests, accepted on a clinical trial for TIL therapy (ACT). Sadly on the day before the treatment started we were informed that his cells had died and therefore he was unable to receive the TILs. This was a real set back and one we were not expecting. The Sheba was excellent and John was offered bio-chemotherapy. This treatment required him to be in hospital for five days at three weekly intervals. The treatment was unbelievably tough and as usual, John was determined and brave, returning home after each five day course. Whilst in Israel, John also received Gamma Knife for his brain metastases.

John responded very well to the bio-chemotherapy and he completed five courses and was soon feeling a lot better and returned to work. We were all becoming very hopeful and started to wonder if maybe he had a chance and would have more time with his family. Although he had responded well to the bio-chemotherapy, there was still work to be done and so the next line of treatment recommended was Ipilimumab an immunetherapy, which he could receive in the UK and so John was referred from Israel to the Southampton hospital in the UK. Again he completed all four courses and we were all hopeful that just maybe he would respond well to this treatment too and his future was going to look a bit brighter. Unfortunately this was not to be, symptoms started to appear, John started feeling unwell again and it wasn’t long before we were told that John had more brain metastases and spine metastases.

John still wanted to continue fighting and we were right behind him but we were scared, he wasn’t really picking up after the radiotherapy and he was becoming weaker in his legs. After an emergency admission, when he was no longer able to walk, we were informed the worst news possible, the news we were all terrified of receiving, there was no more treatment options and John had one to two months to live and as a double blow, he would also never walk again. We really cannot describe the feeling of being told this about someone you love, the pain, the anxiety and complete sadness was unbearable. John was devastated, he wanted to live so badly, he had so many plans and dreams and these were now going to be taken from him by this wicked and cruel disease. How could this happen to our Iron Man?

John’s last six weeks of life were difficult, he chose to die at our parent’s home; he became paralysed from the neck down which made it even more painful as a family to watch and deal with. We all looked after him day and night until he died peacefully with his daughter and father at about 3am on the 18 August 2013, he was age 51.

The loss of John has broken our hearts, we loved him so dearly and so many people’s lives have been shattered. In his last few weeks, he would often say “please don’t remember me like this and please don’t forget me”. We will never forget him; he was the leader of our family and had so much more to do in his life. His funeral was packed with mourners, from all different areas of his life, a clear indication of how well he was thought of and how much he was respected.

As a family we will continue to be interested in melanoma and pray that there is a cure for this horrible disease one day. We are pleased that so many donated to Melanoma UK in honour of John and that this can be used to support other patients and families dealing with melanoma.

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