* remembering Martin: taken after finding a recording of Martin playing his guitar that I didn't know existed *

This is a personal story of emotions and photography. It is about me and it's not about me. It's about my experience as my youngest son had treatment for cancer and then died and how life goes on. This is a story of how I used flickr and the 365 Days group as a way of expressing the pain that I felt and the grief at losing a son. In a way Martin's experience is incidental but it is also about him in the sense that I am grieving for him, thinking about him much of the time, when I want to and when I don't.

What are the facts? My son Martin, who was then 16 years old, was diagnosed with bone cancer in March 2006. He had been having intermittent pains for a year but the doctors had misdiagnosed his condition. He had a large tumour - a Ewing's sarcoma - on his hip and metastases in his lungs and a tumour on his skull. He had chemotherapy for a year and radiotherapy. The chemo involved going in to hospital for 3 or 4 days every 3 weeks. He also had to have various unscheduled visits for blood and platelet transfusions. It seemed as if progress was good as the main tumour had reduced in size and the cancer in his lungs appeared to have gone. But by the time of the last chemo session, the pain in his hip had returned and the cancer was back and was behaving very aggressively. In time Martin had problems breathing and after a few days died at home in the early hours of Good Friday 2007.

For the year that Martin was having treatment, my wife devoted her time to enabling Martin to lead as full a life as possible. At one point, Martin was able to go on a week's holiday to Newquay staying in a caravan with friends; we stayed in the same town, keeping "out of sight" but available to run him to hospital for "bloods" and to provide the daily injections he needed at the time.

I was involved in supporting Martin to a lesser extent because I was also working when he wasn't in hospital. In August 2006, when Martin was about halfway through his treatment, I was taking more photographs than I usually do, and using flickr to back up my work. Photography was sometimes a release from reality and sometimes a way of expressing how I was feeling. Then, like many before me, I got interested in receiving comments and started posting photos in flickr groups or pools. I started to enjoy looking at others photostreams and came across a group called 365 Days. This involves taking a self-portrait every day for a year, hence the name "365 Days." Now, I'd never really taken self-portraits before and was rarely in family photos because I was usually the person behind the camera; so it'd be nice to have some photos of me. Give it a try, I thought.

My day 10 photo was taken before going to the hospital for the next round of chemo. I wrote something to that effect and received a concerned comment from "elladog." Before long I was in a regular comment exchange and occasional flickrmail dialogue with her and a number of 365 Day members.

The diagnosis of cancer and Ewing's sarcoma had really shaken me. Reading up on Ewing's, I discovered that the chance of surviving this particularly aggressive cancer was pretty dismal. At home I tried, with some difficulty, to appear positive and let life carry on as normal. Inside, I was in some turmoil and wanted to share my fear, sadness and anxiety. But it was hard to do that with people around me who were dealing with their own feelings in their own ways and didn't want to also have to deal with mine. And this is where flickr came in. It provided a means for expressing and sharing feelings through creating and sharing visual images and some text, and developing relationships with people who were strangers but seemed to care. The exchange of comments and sharing of experiences also helped me to understand better what was happening and what I was feeling.

* corner / sad *

But back to real life, my wife and I were focusing on giving Martin as much support as possible to live the life that he wanted during what turned out to be his last year. A lot of energy went into supporting him. And then a lot of energy was consumed by the feelings and emotions that come with cancer and treatment by chemotherapy and radiotherapy. Feelings of sadness came early in the process for me. The hospital environment encouraged this. The murals and paintings and artwork and flowers made for a slightly more human place than hospitals in the past but hospital is not a place to live. Many of my self-portraits are about capturing the interaction between me and the hospital environment. Spending so much time there means you have time to be numb, time to think, time to be sad, and certainly I was very aware of the environment and my reaction to it. Partly, I think that comes from being into photography, visual images and to some extent thinking visually.

There was a space - an empty corner of a room in the hospital - that I returned to on a number of occasions and tried to capture, in a series of photos, the range of emotions that I was feeling because of Martin's situation, his treatment, the hospital environment and of course my situation as his father and as myself. In this particular space, in a number of photos, I was acting out for the camera an emotion I'd been feeling. It wasn't always real at the time but it was an emotion that was lurking there much of the time.

* in the waiting room *

At other times, particularly in the waiting areas and the parents'rooms, I felt I was usually capturing the real thing, capturing emotions I was feeling at the time. Why did I want to do this? Why was I doing this? Why did it help? I think it was partly about believing what was happening. Often, it felt like I was in a dream or a nightmare: this couldn't really be happening. I wasn't really here. I'd wake up soon. Things would be back to normal. The image was a sort of confirmation that the nightmare was not a dream. Then it was also about recognising and understanding what I was feeling and understanding that it was reasonable to have fear, anxiety, to be sad and to cry. Thirdly it was about sharing with others and getting feedback and not feeling alone.

It was amazing how consoling the comments and concerns of strangers could be. I say strangers but in fact, without ever meeting or speaking, some of these people had become friends. I guess we had something in common to begin with, an interest in photography and visual images and a desire to share with others with similar interests. Still, it was a surprise how deep feelings could be aroused through sharing photos. "Elladog" has written about this from the perspective of someone viewing my stream at her blog RubySoho - this is well worth a read.

Sharing photos on flickr led to a strange experience of becoming friends with people across the world who I'd never met. This is perhaps something Utata members understand. But the experience I shared with a group of 365 Days members was special as it was about sharing perhaps the most painful experience that a parent can go through and having regular exchanges through comments and flickrmail - communicating through the visual image and sometimes words - and people apparently really feeling for you and understanding and wanting to help.

* Martin's banjo / the day he died *

I didn't just try to capture the sadness and grief. There were some happy moments and it was important to try to recognise and capture these times. Even on the worst of days, there might be a moment of beauty, a moment of sharing, of togetherness, of happiness. And I would try and make a mental note of such moments, be aware that they were happening, and sometimes capture them on camera. My self-portrait taken on Good Friday, the day that Martin died, is a photo of me playing with Martin's new banjo. This photo was so appropriate for a number of reasons. Martin was as positive as it was possible to be right up to the end. On the day he came home, perhaps 36 hours before he died, he played the banjo we'd bought him as a present. A talented guitarist, he'd been reading a teach-yourself banjo book in the hospital so when he picked it up for the first and only time he was able to play a tune. So it was a photo of me with one of Martin's possessions, one of especial significance. And Martin's possessions and the spaces he inhabited and the places he'd loved have now all become so special and significant. The memories are both intensely emotionally painful and pleasurable at the same time. I hadn't known before that such emotional conflict was possible or that I would want to experience and re-experience such feelings.

According to some psychologists, there are various stages in grief, although now you don't have to go through each stage in turn. Denial was there for me to some extent. Not denial in the sense of failing to believe that Martin had died, but certainly a strong feeling of unreality. That this wasn't really happening though I knew it was. That maybe this was a dream and I would wake up, although I knew it wasn't and I wouldn't. And, the strongest feeling of all, that it can't be the case that he has really gone for good.

* was it your fault? *

And then there is ANGER. Why was Martin not diagnosed with cancer, even though he attended the doctor on numerous occasions with a pain in his hip? (He had a tumour on his pelvis.) Why was he not given an x-ray which probably would have led to a correct diagnosis? Was it the fault of the doctors? Can I be angry with them? Or who else could I blame? I could blame myself. Why didn't I get worried about what was happening and jump up and down more when the doctors did nothing? Why didn't we take him to accident and emergency where they probably would have x-rayed him? Why didn't we attempt to insist that they operate to remove the bone and tumour? Then there's the issue of genetics. What if it's a genetic condition? Is it then our fault? Can I be angry with myself? Rationally, I know I'm not to blame but that doesn't mean I don't feel it. I guess I'd feel better if I could find someone else to blame. Can I blame you?

* visiting Martin's grave *

Thinking about the future is hard but I can't stop doing it. I think about what Martin would have done or might have done. I think about the great things he would have achieved. I think about the fantastic songs and music that won't now be created. I think about the fun his friends would have had with him and how he'd have supported them when they needed him.

Three girls had been fantastic in visiting Martin at most, if not all, of his visits to hospital. One in particular just spent so much time being with Martin, just being there for him when he was suffering most. And she was there (with another of his friends) through his last day and then regularly visiting his grave after his death. She is such a fantastic amazing girl. I imagine the time they would have had together if things had been different.

Although there's no future for Martin, his story isn't over. He touched many people and some of them will have different lives as a result of his influence. And I guess I've touched a few people too. And that's partly been through this strange medium of flickr which has helped a bit. It's been a distraction and a way of sharing. Sharing the pain has not make it less, but it has helped me to cope with it. And maybe some of the photos and text have helped a few others too.


With thanks to Val and to Aaryn (elladog).