Simon11

SIMON JAMES BRUNTON
19th July 1982 - 18th April 1998

The heartache behind the smiles

As planned, early in January 1998, Simon went for another brain scan and on Amy's birthday, 21st January, we were to due at the neuro/oncology clinic for an appointment. The doctors checked Simon over and were quite surprised at the progress he had made with his mobility and discussed involving other paediatric services we could use for the future. We were told that they hadn't got the scan results, but that our oncologist would ring us through with the results, this was nothing new, it always took ages to get hold of the scan results, so we didn't think much of it at the time.

A couple of days later, after we had been to drop Simon off at school, we arrived home to find a message on the answerphone from Simon's oncologist, saying that he would like to talk to us, it filled us with terror. Vince rang the oncologist who asked us in to see him, the following day, because he had some news for us. All that he would tell Vince over the phone was that it wasn't good news. We knew, before he told us, what that news was going to be. We knew we couldn't say anything to the children until we knew for sure, so that night Vince and I put on a remarkable performance of normality........until the children were in bed, then we just broke down into floods of tears, we were so scared. We spent the night crying, hugging and talking. We finally went to bed around 4am, because we knew we had to be bright and breezy for the children in the morning. I don't think either of us got any sleep.

Fortunately the next day both the children were due at school, so we could go to the hospital without having to make special arrangements for them and arousing their suspicions. Simon's paediatric Macmillan nurse, Helen, offered to come to the hospital with us and we grabbed at the chance of some moral support. We arrived at the hospital and didn't have to wait very long before the oncologist came to see us. We sat in shock horror as he voiced our fears......the cancer had returned so aggressively that there was nothing they could do to help Simon. After a lengthy discussion the oncologist asked if we wanted some time to ourselves. We said yes and agreed to him coming back in a few minutes. We sat there shell-shocked, as much as we had known what the oncologist was going to say, to hear him put it into words was horrifying. We had hundreds of thoughts rushing around in our minds, the main one being...... How were we going to tell the children?

Amy was so protective of Simon

It was the moment we had dreaded most, we had been praying for two years that this moment would never arrive. We were being told that we had lost the battle and that Simon was going to die. The oncologist returned and told us that what some parents opted to do was to have him tell the children, thereby giving the children the opportunity to ask any questions they may have. We thought this would probably be best, as we didn't want to end up being the bad guys if we broke the news to the children. If they heard it straight from the doctor then it would be more believable. Well, that's what we told ourselves.....of course it could have been sheer cowardice on our part! The oncologist couldn't see the children until the end of the week, but Vince and I knew we had to say something to the children, we couldn't keep it to ourselves until then and anyway the children would see right through us.

The way that Vince and I felt those few days was so alien to us, we had always been open and honest with our children, but now we were virtually lying to them, it felt awful. Having to keep looking over our shoulder to see where the children were before we could talk seemed so strange, we'd never been like that before. We just wanted to get the appointment with the oncologist over and done with so that we could talk about the situation openly with our children. We decided to tell the children that we'd had a phone call from the oncologist and that he wanted to see us all at the end of the week. When they asked why, we told them it was something to do with the scan results. From time to time during the week they would ask questions and we just kept reinforcing the fact that whatever happened we would face it together as a family.

The way we were

The day finally arrived to go and see the oncologist, Vince and I knew that we needed all the emotional strength we could muster to get us all through this day and the time ahead. Although we were all in the office, the oncologist spoke directly to Simon telling him that the cancer had returned, giving him time to digest every bit of information and ask any questions he had. So often throughout this nightmare we'd had run-ins with doctors who insisted on talking to Vince or I about Simon. We felt that they should afford Simon the respect of speaking to him directly, after all it was his body, he could answer questions about how he was feeling. Simon did have some questions and told the doctor that he would even have more surgery or chemotherapy if that would help. He was so brave, it brings tears to my eyes just trying to write about it.

Afterwards the oncologist told Vince and I that he had never seen anyone take the news so calmly. We were left alone for a little while and the children asked Vince and I some questions, just to get it straight in their minds. We answered their questions and then got out of there as soon as we could, we needed to be alone with our children, to give them an environment in which they could voice their fears and anxieties. Simon was given some oral chemotherapy to use at home, but this was for palliative purposes only. It gave us the breathing space we needed to face one crisis at a time. Now we could discuss the fact that the cancer had come back and what that meant, before we faced the inevitable conversations about Simon dying.

The journey home took about 40 minutes, we didn't talk very much, everybody was deep in thought. When we got home we all sat in our lounge and the first thing Simon asked his dad was "How are we going to tell everybody without upsetting them?" That was so typical of Simon, he always put other people first no matter what. Sometimes it even made us cross because he would even suffer himself to make things better for someone else. We tried to tell him about it a few times, but he never changed, that was how he wanted to live his life and that was how he WOULD live it. We spent hours talking to Simon about the cancer, he wanted to discuss all the possibilities, more surgery, more chemotherapy or more radiotherapy, but when we told him that none of these things could be done, he would always reply "I'm not giving up, I'm going to fight this thing all the way". When faced with an attitude like that we couldn't discuss his dying. To even think about discussing Simon's death was to us an act of defeatism and we weren't done fighting yet!