John Harvey

John is 72 years old and was diagnosed with mesothelioma in 2021. At the time, John was told he probably had around six months to live. Shockingly, John’s wife was also diagnosed with mesothelioma in 2022. Two years and seven months since his diagnosis, John is sharing his story which he hopes will make people feel more positive.

John Harvey retired from a career in the construction and carpentry industry in 2012, aged 61, and was enjoying retirement with his wife, Sue. John led an active life and both he and Sue enjoyed walking, cycling and generally being outdoors.

It was in December 2020, while out on a usual walk with their dog, that John suddenly became out of breath. This was unusual for him but, as this was during the COVID-19 pandemic, he thought it might be that. However, his Covid test on Christmas day was negative.

The breathlessness did not improve so John called 111 and got an appointment with a GP on 29 December. The GP immediately referred John to hospital with a suspected collapsed lung. John was in hospital for three days and had various tests, a CT scan and fluid drained from his lung. He was referred to another consultant.

Although he was feeling better, on 7 January John saw the consultant who sent him for a biopsy and also asked him if he had ever been in contact with asbestos. John had started his career in the construction industry in 1967 as a carpenter’s apprentice.

“I remember using asbestos materials but we were given no personal protective equipment (PPE) and no warnings about the asbestos which we worked with and went on our clothes.”

John received the results of his biopsy on 2 February 2021. The consultant confirmed that it was mesothelioma.

“I was told straight away that I maybe had six months to live and that, while I could have chemotherapy to prolong things, there was no cure.”

Like many people, John had never heard of mesothelioma, so the diagnosis and prognosis was a complete shock to him and Sue. However, he immediately knew that he would take any treatment offered to give himself the best chance at living longer.

On his 70th birthday, in February 2021, John’s consultant rang him to tell him about a drug trial, using nivolumab and ipilimumab, which she thought John would be a good candidate for as he was generally feeling well.

John began the trial on 3 March 2021 and started having a dose of the drugs every three weeks. Fortunately, he had no side effects and managed the drugs very well for a whole year. Then, in March 2022 his regular scans revealed some problems with his kidneys and his eyes. “I had no symptoms of the kidney problem and wouldn’t have known about it without the scan.”

He was given steroid eye drops which improved the issue but was advised to stop the trial treatment to allow his kidneys to recover. So, after a year on the trial, during which his tumour had stabilised, John stopped the treatment and his kidneys improved.

In November 2021, while John was on the drug trial, Susan experienced similar symptoms to John – breathlessness while walking. She had various tests, but nothing was conclusive. Mesothelioma wasn’t suspected as Susan had worked in offices all her life and wasn’t aware of any exposure to asbestos. Plus, surely the chances of a husband and wife both having it were very slim? Especially when they didn’t meet until 15 years after the last time John had been around asbestos.

Sadly, Susan continued to be unwell, more unwell than John had ever been, and in April 2022 a biopsy confirmed mesothelioma. By August, Susan went into hospital and despite chemotherapy, her situation didn’t improve. She went into a hospice to manage her pain and died on 2 September 2022.

Eleven months after her death, John is still dealing with his grief, as well as his own prognosis. He realises how fortunate he is to still be alive and living well – remaining positive and pain free.

Although he sometimes gets slightly more breathless than he used to, he can remain active and still enjoys walking. He has no treatment currently – just a CT scan every three months – and the cancer is stable.

Despite the devastation of losing Susan to the same disease, John maintains a positive attitude and encourages others to do the same. He knows, more than most, that life is short and that everyone should make the most of it.

“Just try to stay positive. I’m lucky to be here and I’ve got to make the most of my life now.”

He also says that, if given the opportunity, he would advise anyone to join a clinical trial.

“While symptoms, treatments and outcomes are different for everyone, there is nothing to lose by giving them a go.”

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