Emily Lygo lives in Oxford, UK, with her husband Simon. She is a specialist in Russian Literature and was teaching at Oxford University when she and her family received the news that her younger brother Oliver was diagnosed with stage 4 alveolar rhabdomyosarcoma.
This story of Olly's journey with sarcoma is really a tribute to his bravery. In August 2005 he didn't really know where he was going with his life; it turned out that his lot was to be a battle with rhabdomyosarcoma. He rose to the challenge with such courage he has left us not only utterly bereft but also inspired.
I can't say for certain what Olly's journey with sarcoma was really like for him, but I can describe how I saw his experience and what he told me about it. He was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma in September 2005; he hadn't found a tumour, but the level of calcium in his blood was so high that he felt terribly ill. His kidneys were found to be in danger of failing and he was admitted to hospital immediately. It was discovered that the tumour was in his forearm; the cancer had spread to his bone marrow and was already causing terrible pain and permanent damage to his ribs and spine.
Like many people with cancer, Olly went through different moods as he went through the ordeal of treatment. When my family and I look back on those months now, we can discern stages in Olly's relationship to his condition: the low and the turning points; his hope and belief and, at other times, his loneliness and isolation; how the goal posts and parameters of what he would and could cope with constantly changed. This is one way of looking at Olly's sarcoma journey but I don't feel these stages and passages are the most important aspects of Olly's experience.
I don't believe that there's anything positive about getting cancer. What Olly managed to do was to make the best of a very dreadful situation. This means that, even in the face of the tragedy of a 25 year old younger brother and youngest son dying of cancer, we now can find positive things to remember. It allows us to feel that even the last seven months of Olly's life, with all the physical and mental anguish of his situation, weren't all bad. Olly's ability to make the best of things and get on with his life as best he could defines the contours of the journey he made which I think is the most important one.
In November Olly and my older brother Tom decided to take a holiday in La Gomera, in the Canary Islands. Olly had a deep interest in Natural History and loved wildlife photography; on the island he took beautiful photographs of dragonflies and other insects as he had done on many previous travels. In December they went to India with two other friends and spent a week in the baking hot sun eating curry and seeing the sights. Olly was a very experienced traveler and knew well how travel is invariably both exhilarating and exhausting. Although exhausted by chemotherapy and cancer, Olly still managed to travel to Birmingham at the crack of dawn to get a visa, and then go on to Manchester for the long flight, and return just in time to get into the hospital for more treatment the next Monday morning. In January he went with a friend to Cuba. Sadly, they had to come back after a couple of days because he was in such excruciating pain, but he didn't complain about this – only bemoaned the waste of money and the horribly expensive flight home. In his situation, with a terrifying diagnosis and such a lot of pain, I think I would have done exactly what the doctors wanted. I would have worried about my health, and would have tried to believe that if only I did everything I was told, I might get the few months remission the doctors hoped were possible. Olly's decision was much braver, more honest, and less compromising. We all knew there were never any promises that the treatment would work and prolong his life significantly; he had the extraordinary courage required to acknowledge what that really meant and he carried on living life as fully as possible. This meant that he continued to take the rough with the smooth. He would cope with pain when it was caused by doing something he wanted to do. He just didn't let the cancer run his life.
After five cycles of chemotherapy Olly couldn't take any more of it and decided to see what would happen if he left it at that. It wasn't "enough" – whatever enough means in this situation. But Olly didn't want to live his life under the conditions the treatment imposed on him of depression and feeling desperately ill and weak. It was too much of a compromise for him.
Olly didn't want his cancer to run our lives either. We were all devastated by the situation and found it incredibly difficult to get on with things in our lives. But every time we spoke to Olly on the phone he would ask us what we'd been doing. We always knew he'd ask, and knew we had to have something to tell him or he'd know we'd been miserable about him. I'm sure this was his way of keeping us going and not letting the cancer completely take over. A week before Olly died he caught a dangerous infection and we all rushed to the hospital on a Sunday night. He recovered well on Monday and immediately started asking me about the job interview I was due to attend in Sheffield the following day. I had thought about canceling it, but to do so would have been to let him down and not to be as strong as he was. I had to go.
In the middle of March Olly and I went to Spain for 5 days. It was a struggle even to leave England because we had to get his blood results to see if the counts had started to go up. The doctors seemed not to want him to go and he had to argue with many medical professionals in order to find out his results. When we got them they were inconclusive, but in the end we took the chance and went. In fact the counts weren't going up. His haemoglobin was so low he should have been feeling dreadful but he never once complained. Thank goodness we went, because we snatched the last few days in which he could walk and we made the best of them, though they weren't without tough times. The pain constantly lurked in his lower back and would at times erupt into agony. We took to smuggling hotel pillows out in bags when we went to restaurants because the chairs were never comfortable enough. But, armed with pillows, Olly continued to make the best of things, even though he was by now having trouble walking any distance and a worrying numbness had spread through much of his legs and buttocks causing a whole host of problems. We sat in the sun under orange trees at cafes and drank good coffee. We traveled from Malaga to a small white village, Benalmadena, and then onto the stunning town of Ronda which is built on a cliff edge and spans a dramatic gorge. At a giddying height on the bridge over the gorge, Olly stood as high as possible on the railings above the vertical drop and laughed as my knuckles turned white. When we ambled along the scenic walk that followed the cliff top he climbed onto the wall to get a better photo of the choughs wheeling in the air below. One leg was not reliable at all at this point, but he assured me that it was alright as long as he locked the knee. He still wasn't making compromises….
At the last stop on our trip, Antequera, Olly revealed to me that he intended to buy an entire black-trottered jamon Iberico – the highest quality ham that Spain has to offer made from pigs that feed on the acorns of the evergreen oaks in Iberia. I was doubtful as to the wisdom of this idea but did not fuss, and we found out where to buy a good quality ham. We headed for the butchers after some churros for breakfast on our last morning in Spain. Olly was walking with difficulty now and we hoped to find a taxi but there weren't any around. He said he could make it on foot and so we set off in the rain that had started falling that day. After each block we had to stop and rest, and I'm sure Ol was in considerable pain. When we got to the shop he collapsed in a chair, but was soon absorbed by choosing his ham. It was enormous, but he carried it back to the hotel. We had to buy a new bag just to accommodate it, but we got it home to England. Olly's legs gave way the day after we returned home and he never walked without crutches again. Despite this setback, however, he was keen to carve the ham and almost gave Mum a heart attack as he wielded a huge knife on his unsteady legs in her kitchen! (I said that was nothing, that she should have been there when he climbed on the wall over the gorge in Ronda!) The next day he went into hospital again and stayed in for the last two weeks of his life. Mum brought him slices of the ham to eat during that time, but there was still masses left when he died. We ate it ceremoniously at the funeral tea.
My Mum says that if cancer ever hits our family again, we now know what to do. He has shown us how you deal with it.
V3N3 ESUN Copyright © 2006 Liddy Shriver Sarcoma Initiative.