Who Am I?Who Am I? My name is Iain Galloway, I live with my wife and young son in Birmingham in the UK. For several years now I’ve been an Ocular Melanoma sufferer and have had many operations and treatments for the disease — I’m even on first name terms with many of the medical staff!  So that you know a little about me, I work in IT developing databases used in medical screening and I love playing five-a-side football and playing chess (I now run our local school chess club!). Is Something Wrong? Way back in January 2009 I went to doctor with a headache. Nothing serious and after taking my blood pressure, which was fine, he packed me off to the local branch of SpecSavers, the opticians, expecting that I might need glasses. The visit there 2 weeks later was the first sense that there was a problem, and a field test revealed a blind spot in my left eye. They took a look inside and saw a scar (pic attached) and sent me off to a specialist. A month later the specialist took a look and sent me off to another specialist! The final specialist decided that this definitely was not melanoma and said there was nothing to worry about. I celebrated with a few beers and forgot about the whole thing. Diagnosis and Treatment One year later, in May 2010, I had a routine follow-up with the hospital (who had already lost me notes by this stage) and the consultant was fortunate enough to detect a change from the last time. Within two weeks I had an appointment at one of the UK’s leading Ocular Oncology centres in Sheffield where they diagnosed primary ocular melanoma. A week later I was having an operation called Plaque Brachytherapy to burn off the tumour with radiation. This involved having a round, convex, radioactive metal device about the size of a large coin sewn onto the outside of my eyeball. This was left there for 3 full days in the hope that it would burn off the cancerous melanoma which was on the inside of the eye in the same spot. After a few days in hospital, where I couldn’t leave because I was radioactive, the plaque was removed and I was allowed home. Things settled down and my vision recovered well after a course of eye drops. Every six months after this I received scans of my liver to check that the cancer hadn’t spread — 85%-90% of spread from ocular melanoma goes to the liver. Also I received regular check-ups of my eye to ensure the radiation treatment was continuing to do its work and that the tumour was dead. We gradually got used to the situation and life returned to normal pretty quickly. Relapse and Losing an Eye It was another 2 years, in June 2012, that a routine eye check-up revealed a regrowth at the original tumour site. I was told then and there, with my wife Genevieve at my side, that my eye would have to be removed. What a shock that was. We really thought we were over the worst and that we had the cancer beaten — how little we knew. The operation to remove the eye (called an enucleation) was itself reasonably straightforward and again we adapted to life… at the same time we discovered Genevieve was pregnant. It was a peculiar time with such mixed emotions and to help grasp our new reality I made a series of 30 video blogs to help others in a similar situation (see links below). Spread to my Liver – how long have I got? The shocking news, when our son wasn’t yet 6-months-old, that I’d likely have less than a year to live, came in October 2013. A scan revealed a mass in my liver and by this time we were so complacent that the results might be likely to be good that Genevieve hadn’t come with me (well, we did have a tiny baby I guess!!) and I’d gone with a friend. I knew it was bad news when the nurses followed us into the consultant’s room with a tray of tea and biscuits — that’s usually only reserved for the very worst news  It was explained to me that I’d only have a short amount of time to live and perhaps within 6 months I’d be experiencing end-of-life symptoms. The entire experience was surreal — and that’s always been the best description to fit. Trying to mentally cope with your imminent death at the same time as changing nappies and preparing baby food. It was a very upsetting time too and what hurt the most was thinking our son, Ted, would never remember me or know who I was. The next weeks were a frantic whirlwind as we joined forces with good friends, joined the incredible OcuMel UK and sought out ways to keep me alive. Batteries of tests followed at specialist centres across the UK and meetings with the most well regarded oncologists in this specialist area. In the end we knew there were 13 tumours, thankfully confined to the liver, and not in the ‘peppered’ distribution that often marks out metastatic ocular melanoma. There were differing opinions from different oncologists and surgeons. We decided to go with the opinion of the team in Southampton based solely on the fact that they both had a dedicated MDT (multi-disciplinary team) for our disease and saw more metastatic ocular melanoma patients than any other centre. It was a sound rationale for basing our decision and one that has meant I’m still here. The radical solution suggested by the surgeon was to simply remove as much of my liver as possible, 5 of 8 lobes in their entirety, and most of a sixth. No more removal is possible from the liver and yet they thought it would offer the best chance by ridding the liver of any microscopic and unseen lesions still lurking. The wait for treatment Having decided on a course of action, we couldn’t have predicted the crazy turn of events about to happen. On Christmas Eve 2013 I went to the Queen Elizabeth in Birmingham, where my operation was due to take place two weeks later, in order to have the routine test prior to the operation. Whilst driving there with the car radio on the main BBC Radio newsreader announced, as the main headline, how a liver surgeon from Birmingham’s QE hospital had been suspended for signing his initials on patient’s livers. The word surreal took on a whole new dimension as it turned out my operation would be postponed as a result (although no-one at the hospital would admit it) and we were cast into panic over the Christmas holiday trying to reinstate my operation which had suddenly and inexplicably been put out by 2 months — by which time it would have been too late for me. Complaints to the hospital and using as many medical contacts as we could over the coming days, plus personal appeals to the other liver surgeons at the hospital were what saved my life. This whole episode was masterminded by my loving wife Genevieve who left no stone unturned in trying to get things back the original operation date — thankfully she managed to resolve the issue eventually with a personal appeal to one on the main liver consultants contacting him on his personal mobile phone whilst he was on holiday! Whatever it takes. Immunotherapy and other treatments The liver surgery was a great success and I’m indebted to so many people, not just on the medical side, but also family and those friends close to us who rallied and cooked meals and helped in so many ways. Despite the radical nature of the operation, and the fear waiting in the hospital with Genevieve beforehand, it worked out better than expected. After waking up with 8 tubes coming out of various places I was home within 5 days and up on my feet soon after. Within 2 months I was even playing football again! Now that we’d weathered the storm it was important to get on top of the disease once again. Immunotherapy options were starting to be made widely available and in April – June 2014 I took a course of Ipilimumab. A year later in June 2015 a small lesion was discovered on liver and that was ablated with microwaves (burnt off basically with a needle inserted into the tumour in my liver). A second course of immunotherapy followed as I took Pembrolizumab for the next 18 months. There were some scares along that route too with the constant concern of auto-immune side effects. I stopped the treatment in December 2016 because of suspected auto-immune hepatitis although this soon settled down after stopping treatment. After that point all my scans have been clear, but not without some heart-stopping moments when rogue lumps and bump appear on scans. So far I have to consider myself incredibly lucky. Involvement in Patient Advocacy The number of failures in the medical system: initial misdiagnosis, lost notes, the debacle with the surgeon and similar left me concerned that patients wouldn’t always get the best deal. It shook me out of an irrational belief that everything is always done for the best for you. Most doctors and consultants I have met are wonderful, caring individuals, yet the system within which they work and the competing pressures of cost-saving and caution mean there is still a great disparity of care even in the wealthiest countries. It was for that reason that I became involved in patient advocacy, and in January 2016 co-founded the Ocular/Rare arm of Melanoma Patient Network Europe (MPNE). We haven’t looked back and, with over 265 members, continue to look for the most practical ways in which patient lives can be extended and saved. There are no boundaries to our work & endeavours and we fiercely fight the corner for patients at all levels of care across Europe. Links B13 story Eye Survive Diary Video diaries after losing an eye Liver surgeon branding

My name is Iain Galloway, I live with my wife and young son in Birmingham in the UK. For several years now I’ve been an Ocular Melanoma sufferer and have had many operations and  treatments for the disease — I’m even on first name terms with many of the medical staff! J So that you know a little about me, I work in IT developing databases used in medical screening and I love playing five-a-side football and playing chess (I now run our local school chess club!).

Is Something Wrong?

Way back in January 2009 I went to doctor with a headache. Nothing serious and after taking my blood pressure, which was fine, he packed me off to the local branch of SpecSavers, the opticians, expecting that I might need glasses. The visit there 2 weeks later was the first sense that there was a problem, and a field test revealed a blind spot in my left eye. They took a look inside and saw a scar (pic attached) and sent me off to a specialist. A month later the specialist took a look and sent me off to another specialist! The final specialist decided that this definitely was not melanoma and said there was nothing to worry about. I celebrated with a few beers and forgot about the whole thing.

 

Diagnosis and Treatment

One year later, in May 2010, I had a routine follow-up with the hospital (who had already lost me notes by this stage) and the consultant was fortunate enough to detect a change from the last time. Within two weeks I had an appointment at one of the UK’s leading Ocular Oncology centres in Sheffield where they diagnosed primary ocular melanoma. A week later I was having an operation called Plaque Brachytherapy to burn off the tumour with radiation. This involved having a round, convex, radioactive metal device about the size of a large coin sewn onto the outside of my eyeball. This was left there for 3 full days in the hope that it would burn off the cancerous melanoma which was on the inside of the eye in the same spot. After a few days in hospital, where I couldn’t leave because I was radioactive, the plaque was removed and I was allowed home. Things settled down and my vision recovered well after a course of eye drops. Every six months after this I received scans of my liver to check that the cancer hadn’t spread — 85%-90% of spread from ocular melanoma goes to the liver. Also I received regular check-ups of my eye to ensure the radiation treatment was continuing to do its work and that the tumour was dead. We gradually got used to the situation and life returned to normal pretty quickly.

 

Relapse and Losing an Eye

It was another 2 years, in June 2012, that a routine eye check-up revealed a regrowth at the original tumour site. I was told then and there, with my wife Genevieve at my side, that my eye would have to be removed. What a shock that was. We really thought we were over the worst and that we had the cancer beaten — how little we knew. The operation to remove the eye (called an enucleation) was itself reasonably straightforward and again we adapted to life… at the same time we discovered Genevieve was pregnant. It was a peculiar time with such mixed emotions and to help grasp our new reality I made a series of 30 video blogs to help others in a similar situation (see links below).

 

Spread to my Liver – how long have I got?

The shocking news, when our son wasn’t yet 6-months-old, that I’d likely have less than a year to live, came in October 2013. A scan revealed a mass in my liver and by this time we were so complacent that the results might be likely to be good that Genevieve hadn’t come with me (well, we did have a tiny baby I guess!!) and I’d gone with a friend. I knew it was bad news when the nurses followed us into the consultant’s room with a tray of tea and biscuits — that’s usually only reserved for the very worst news J

 

It was explained to me that I’d only have a short amount of time to live and perhaps within 6 months I’d be experiencing end-of-life symptoms. The entire experience was surreal — and that’s always been the best description to fit. Trying to mentally cope with your imminent death at the same time as changing nappies and preparing baby food. It was a very upsetting time too and what hurt the most was thinking our son, Ted, would never remember me or know who I was.

 

The next weeks were a frantic whirlwind as we joined forces with good friends, joined the incredible OcuMel UK and sought out ways to keep me alive. Batteries of tests followed at specialist centres across the UK and meetings with the most well regarded oncologists in this specialist area. In the end we knew there were 13 tumours, thankfully confined to the liver, and not in the ‘peppered’ distribution that often marks out metastatic ocular melanoma. There were differing opinions from different oncologists and surgeons. We decided to go with the opinion of the team in Southampton based solely on the fact that they both had a dedicated MDT (multi-disciplinary team) for our disease and saw more metastatic ocular melanoma patients than any other centre. It was a sound rationale for basing our decision and one that has meant I’m still here. The radical solution suggested by the surgeon was to simply remove as much of my liver as possible, 5 of 8 lobes in their entirety, and most of a sixth. No more removal is possible from the liver and yet they thought it would offer the best chance by ridding the liver of any microscopic and unseen lesions still lurking.

 

The wait for treatment

Having decided on a course of action, we couldn’t have predicted the crazy turn of events about to happen. On Christmas Eve 2013 I went to the Queen Elizabeth in Birmingham, where my operation was due to take place two weeks later, in order to have the routine test prior to the operation. Whilst driving there with the car radio on the main BBC Radio newsreader announced, as the main headline, how a liver surgeon from Birmingham’s QE hospital had been suspended for signing his initials on patient’s livers. The word surreal took on a whole new dimension as it turned out my operation would be postponed as a result (although no-one at the hospital would admit it) and we were cast into panic over the Christmas holiday trying to reinstate my operation which had suddenly and inexplicably been put out by 2 months — by which time it would have been too late for me. Complaints to the hospital and using as many medical contacts as we could over the coming days, plus personal appeals to the other liver surgeons at the hospital were what saved my life. This whole episode was masterminded by my loving wife Genevieve who left no stone unturned in trying to get things back the original operation date — thankfully she managed to resolve the issue eventually with a personal appeal to one on the main liver consultants contacting him on his personal mobile phone whilst he was on holiday! Whatever it takes.

 

Immunotherapy and other treatments

The liver surgery was a great success and I’m indebted to so many people, not just on the medical side, but also family and those friends close to us who rallied and cooked meals and helped in so many ways. Despite the radical nature of the operation, and the fear waiting in the hospital with Genevieve beforehand, it worked out better than expected. After waking up with 8 tubes coming out of various places I was home within 5 days and up on my feet soon after. Within 2 months I was even playing football again!

 

Now that we’d weathered the storm it was important to get on top of the disease once again. Immunotherapy options were starting to be made widely available and in April – June 2014 I took a course of Ipilimumab. A year later in June 2015 a small lesion was discovered on liver and that was ablated with microwaves (burnt off basically with a needle inserted into the tumour in my liver). A second course of immunotherapy followed as I took Pembrolizumab for the next 18 months. There were some scares along that route too with the constant concern of auto-immune side effects. I stopped the treatment in December 2016 because of suspected auto-immune hepatitis although this soon settled down after stopping treatment. After that point all my scans have been clear, but not without some heart-stopping moments when rogue lumps and bump appear on scans. So far I have to consider myself incredibly lucky.

 

Involvement in Patient Advocacy

The number of failures in the medical system: initial misdiagnosis, lost notes, the debacle with the surgeon and similar left me concerned that patients wouldn’t always get the best deal. It shook me out of an irrational belief that everything is always done for the best for you. Most doctors and consultants I have met are wonderful, caring individuals, yet the system within which they work and the competing pressures of cost-saving and caution mean there is still a great disparity of care even in the wealthiest countries.

 

It was for that reason that I became involved in patient advocacy, and in January 2016 co-founded the Ocular/Rare arm of Melanoma Patient Network Europe (MPNE). We haven’t looked back and, with over 265 members, continue to look for the most practical ways in which patient lives can be extended and saved. There are no boundaries to our work & endeavours and we fiercely fight the corner for patients at all levels of care across Europe.

 

Links

B13 story

Eye Survive Diary

Video diaries after losing an eye

Liver surgeon branding