The longtime NHS supporter from Lisburn tells Stephanie Bell about his diagnosis and the shock of being told he couldn’t have proposed reconstructive surgery here
A retired school teacher who faced an out-of-the-blue cancer diagnosis in March has told of his shock at being refused critical surgery in Belfast because of Covid-19.
Instead, John Price (69) from Lisburn went into £50,000 worth of debt and travelled to London to go through the major procedure.
John, who is former head of art at St Louise's Comprehensive School in Belfast, needed an aggressive grade four tumour removed from his mouth which required having his jaw broken and reconstructed.
While the cancer made him especially vulnerable to complications from the virus, he had no choice but to leave his home during lockdown to travel to England where he had the surgery three weeks ago.
Too weak to return home, he was able to stay with his sister Margaret who lives in England and finally made the long journey by boat back to Lisburn on Thursday.
Since his diagnosis in early March, John has endured trauma after trauma.
Initially he was offered the surgery in Belfast and then refused it because of the pandemic.
He was first told it was due to concerns over Personal Protective Equipment (PPE) and risks to medical staff.
He was grateful to his GP, Dr Michael Carson from Lisburn, who helped secure a second opinion, only to be told this time the reason he couldn't have the surgery was because there were no ventilators available.
A socialist and lifelong supporter of the NHS who has always been opposed to private health care, John is still stunned that, when he needed it most, the NHS let him down.
Now he hopes to stand in solidarity with others who find themselves in a similar situation due to Covid-19.
He says: "It is absolutely shameful how I have been treated but it isn't about me now. I will be following my own path in relation to getting accountability from the hospital but there is a bigger issue now with others having operations and treatments cancelled.
"I applaud the NHS and always have and I have raised funds for them in the past but there is no doubt what is happening now is costing lives.
"I pledged this before I went to England that, if I survive, I will seek a day of reckoning so that it can't happen again and I am available to help anyone I can and stand shoulder to shoulder with them - that's what solidarity is."
John's ordeal began when he attended his dentist in early March to have a wisdom tooth removed.
"I had to get the area where the tooth came out packed and the pain was excruciating," he says. "I was going back and forth to the dentist to get it packed and then one day the dentist rang and asked could I come in.
"I thought I was going in to get the packing changed but when I arrived the dentist told me it wasn't good news and that I had oral cancer.
"He had taken a flap of skin from my mouth and told me for some reason he decided to get it tested. It felt as if he was talking to someone else, not me. I couldn't take it in."
John very quickly got an appointment at the Ulster Hospital on March 10 where a surgeon explained his options.
He was told he had an aggressive grade four squamous cell carcinoma which needed removed urgently.
"The surgeon said the treatment for me was gold standard," he remembers. "I asked what that was and he explained that the tumour would come out and I would have to get my jaw reconstructed using a bit of bone from my leg.
"He explained that there was silver standard which is the tumour being removed with no reconstruction.
"That would leave me with severe facial disfigurement and with eating and speech difficulties. I wouldn't be able to chew for the rest of my life.
"The third option was radiotherapy which would make being able to get jaw reconstruction done incredibly unlikely.
"To me it was a no-brainer and the first option was the only one to consider and, thankfully, the surgeon agreed. Even though it was daunting I was grateful that I was going to get the treatment."
Within days John was called back to the Ulster Hospital where he was shocked to discover that the team in charge of his case had done a U-turn.
He was told that due to "issues with PPE" the gold standard surgery couldn't be carried out.
"It was March 23, my wedding anniversary, and when we went into the room the surgeon and a cancer nurse were sitting with full PPE on," John says.
"The surgeon told me they were withdrawing the offer of gold standard treatment because of PPE problems. He said the risk to hospital staff was too great.
"He said my only option was the silver standard which would leave me severely disfigured and unable to eat or speak properly. I wouldn't be able to chew for the rest of my life.
"I was disconsolate. I knew the tumour was aggressive and I needed surgery but I didn't want to be left disfigured and unable to eat or speak.
"I went home and didn't know what to think. My sister rang and I told her and about two hours later I got a text from her in capital letters telling me to ring this man, Mr Luke Cascarini."
I was lucky that I was able to borrow the money and have a house to recuperate in, but what about someone who couldn't afford to pay for accommodation or the surgery. What would they do?
Mr Cascarini is a leading surgeon of the mouth, jaw and face, based in London with a reputation for using techniques and methods at the forefront of his field.
John found a very positive and reassuring specialist on the line who told him he was happy to carry out the complicated mandibulectomy (jaw removal) and reconstruction. However it would cost £50,000 which had to be paid up front.
With no access to such a huge amount of money, John tried to remortgage his home to raise the funds but because no house valuations can be carried out due to Covid-19 that couldn't happen.
Instead, in a race against time, friends and family dug deep to lend him what they could and in a matter of days he was able to pay for his surgery.
John underwent the complicated seven-hour procedure on April 18. He also had 59 lymph nodes removed from his neck and was only told on Thursday of this week that the cancer had not spread.
He says: "I was told in the short time from my last scan that the tumour had grown and that I just got it out just in time.
"My wife Christina travelled to London with me and also my youngest son Kevin who was absolutely heroic in the way he stepped up to the plate. I also had my sister Margaret who lives in England there.
"She arranged a Covid-free house for me to stay in London before my surgery.
"What strikes me is how someone with no money or support would have coped. I was lucky that I was able to borrow the money and have a house to recuperate in, but what about someone who couldn't afford to pay for accommodation or the surgery. What would they do?"
John, who also has a daughter, Una (39) and son Michael (42), is now back home in Lisburn being cared for by his family.
And he has been overwhelmed by the support he is receiving from locals and many of his former pupils who have set up a fundraising appeal to cover his costs while he was in England.
"When I was first told I had cancer my instinct was not to tell anyone so as not to worry them," he says. "My wife encouraged me to tell people and I am so glad she did.
"One of the best things I did was to open up and tell people about it as the support I received has been bottomless. I couldn't begin to describe the incredible sea of warmth and love I have got from people. It is overwhelming."
Hundreds of his former pupils have rallied round to support the appeal, which has amassed £20,000 in two weeks.
One of the organisers, Mark Hewitt, said: "John worked his whole life; contributing to the NHS.
"When he needed it most, he found that it had been irreparably damaged and was unable to provide him with the care he needed. He has just been through life-saving surgery. He shouldn't be left with these debts hanging over him. We knew that people would rally around to try to help him out, if they knew what was happening".
As he continues his recovery, John is overcome with emotion by the support he has received and now is determined to support others.
He adds: "There is a Bob Dylan quote - 'It is strange how people who suffer together have a stronger connection than those who are most content'.
"We have to stand by each other in these awful times. The world has gone mad and I want to give a voice and support to anyone else who is denied these operations. I feel humbled and grateful for the support I have received and it is beyond my ability to express gratitude.
"To all the people who are anonymous and donated who I will probably never meet, I would like to say thank you. People are dealing with Covid and a time of austerity and yet they have still donated money to help me.
"Ninety percent of those who have donated are female and former pupils and I don't know how I will ever repay that debt of gratitude, it is an amazing community."
When approached for their response to John's case, a statement from the Trust said: "The South Eastern Health and Social Care Trust has followed national guidelines issued on March 17, 2020 to UK Head and Neck Multidisciplinary Teams by the British Association of Head and Neck Oncologists.
"These provide guidance for head and neck cancer services during the Covid-19 pandemic and are intended to guide and support decisions made locally, regionally and nationally by Head and Neck Multi-disciplinary Teams.
"These guidelines advocate wide local excision without reconstruction to include restriction/cessation of surgical procedures requiring post-operative HDU/ICU care.
"Further consideration should be given to reducing the length of surgery when possible eg use of local/pedicle flaps rather than free flap."
The statement explained that Northern Ireland has a regional Head and Neck Cancer Multi-disciplinary team comprising clinicians from all Trusts providing head and neck cancer surgery.
Treatment plans are agreed by a weekly multi-disciplinary team.
The trust added: "The multi-disciplinary team take cognisance of the British Association of Health and Neck Oncologists guidance and the regionally agreed specialty guides developed by the Northern Ireland Cancer Network.
"The South Eastern HSC Trust cannot discuss individual cases due to confidentiality but would like to reassure that adequate PPE and postoperative HDU/ICU is available where considered necessary. The trust is happy to meet with Mr Price and his family should he wish to discuss further."
You can support John's fundraising appeal at www.gofundme.com/f/weh8m-for-john