Eye Survive: The story of Iain Galloway’s fight to see his son go to school.
Sunday, 8th February 2015
Iain lives in Moseley with his wife Gen and their son Ted. They lead a normal life but since Iain’s diagnosis of Ocular Melanoma, that’s been at risk. Iain is in good health presently but the threat is always there; one scan could change everything.
Ocular Melanoma is a rare and incurable form of cancer. Iain’s doctors are almost certain it will return.
Iain: The initial diagnosis was May/June 2010. There’d been a suspicious lump on my eye for a year or so. To remove this, surgeons sewed a convex plate onto the eye to irradiate the tumour. Two years later the tumour was back and the eye had to be removed. Ocular Melonoma is particularly aggressive. In 50% of cases it will spread.
In October 2013, when Ted was six months old, we learnt the cancer had spread to my liver. Surgeons removed two-thirds of my liver which totally regenerated in 6 weeks. Only one in eleven people can have it removed, I was oddly lucky that the cancer was in lumps. 22% of those who have this operation make five years.
I wouldn’t be alive without Gen. When I went for the pre-op consultation in December I learnt the operation, planned for early January, had been cancelled. Gen immediately left work and came straight to speak to the head of the department. It eventually transpired a surgeon had been suspended and his work was being shared out, but the team was overstretched.
Gen: If he had to wait he could have died. The delay was until February but we fought and got it brought forwards to nearly the original date. The operation was to remove all or nothing so time did matter.
Iain: The most recent treatment was immunotherapy. I refused chemo and instead sat for four sessions, three weeks apart. This costs the NHS about £70,000 and I’m very lucky to get it. These new drugs make cancer reveal itself so the immune system can attack it. This treatment is being seen as really effective but you only get one go on the NHS.
My consultant said to me, to beat this you are going to need a ‘war chest’. The NHS doesn’t recognise the treatment as effective yet. Ocular Melanoma is forty times rarer than skin cancer so we just don’t have the numbers to evidence its efficacy to get it licensed.
I’m going to need around twenty to thirty grand a year, that’s the advice from other people who are fighting this. An annual maintenance dose of the immunotherapy is £18,000.
Life is pretty normal until the letter comes for my three-monthly scans. One day it won’t be ok and we need to be ready for that. Waiting two weeks for the results is always stressful.
Gen: The NHS have been wonderful. The doctors help has made such a difference but it’s not their money.
Iain: You need to fight for treatment; there are drugs and novel liver-directed approaches now, getting them is the fight. You need to do research and get a second opinion.
Gen: Be your own advocate, you have to get out there and stand up for everything.
Iain: The online community is really important to make progress, share knowledge and experiences. I’m building a database to try and capture outcomes worldwide to provide a dataset to prove the treatment works.
‘Eye Survive’ has been really good for me. After being diagnosed, friends and family gathered round to start Eye Survive to raise money for future treatments. Each meeting is the chance to share, to be open.
Gen: We will have three big fundraising events this year: the spring fair, a food and drink quiz and another gig. We know lots of local people who will be doing individual things too. The money is there for when he needs treatment, and 20% goes to Ocumel UK (ocumeluk.org) who have been so supportive and informative.
If we weren’t in this area it wouldn’t be so easy to cope with.
Iain: There is something about this community, everybody pulled together. It is beyond belief and I don’t mean just the money, but the people, the meals they came with. It is incredible how supportive everyone has been
Iain: I still worry about my family and what would happen but I believe Melanoma will soon be manageable.
Gen: The idea of Iain seeing Ted go to school seemed so far off last year. He turns two in April and we feel it’s more and more realistic. There’s information on new drugs daily. But timing is everything; it would be terrible if Iain missed out on treatment because it’s not on the NHS yet. That’s why we are fundraising.
You can follow Eye Survive on Facebook and learn more and donate at… www.eyesurvive.org – I encourage you to get online and get involved. See you all at the next event.