Share Your Story
Hearing about others' experiences can be helpful when dealing with death and bereavement. Do you have a personal experience that you'd feel comfortable sharing with the campaign? If so, let us know...
Our son Matthias was diagnosed with a Prostatic Rhabdomyosarcoma two years ago. Our world fell apart when we heard the word cancer; in fact took us a while to actually say 'cancer'. Matthias was told he had cancer and that he would need treatment that would make his hair fall out, among other potential side effects. At first he shouted and screamed, anxious about what he was about to embark on. However, as with each stage of his treatment, he soon embraced it with extreme bravery.
Unfortunately for us, Proton Therapy in America and more chemo resulted in a relapse and consequently more chemo. When that chemo proved unresponsive we were told we would be looking at palliative care only. There was a phase 1 trial drug we could try and, as a family, we decided to go for it. Matthias was a wise soul and knew that without chemo the tumour inside him would grow. Never did we lie to him: we were always honest, telling him every detail the asked for. We felt we owed him at least honesty as he showed us never-ending acceptance.
When the trial drug failed and the morphine increased, we ended up in St Georges and a transfer to CHASE Children's Hospice. I had planned to end Matthias' days in the body of the family at home but his pain levels were such that we had to make him comfortable. CHASE allowed us to be a family again, living together sharing in the experience together. Matthias, my husband, our other three boys and I lived at CHASE for five weeks.
Matthias asked me: "If I don't eat or drink, mummy, I will die, won't I?" When he said "But I'm only 10 years old," I simply replied: "And you have given us the best 10 years of our lives." Prior to this conversation Matthias was agitated, angry and very worried. As soon as he knew the true details he faced it and accepted death with bravery and serenity. My mission now is to change the way we say 'They lost their fight to cancer'. Anyone who is told they will die and can face it, accept it and rationalise it without any resistance is a winner. Matthias' fight merely came to an end - he was a winner right to the end.
Once Matthias was emotionally settled, it was our role as parents to teach everything we could to his younger brothers so that they would feel comfortable with the whole process. On many occasions we were told we were amazing. We weren't amazing, we were just different to most. People don't like to talk about death. Well, it is as natural as birth and if we talk about it openly it makes understanding it easier. The pain will never leave and it shouldn't, because pain and crying is remembering and keeping Matthias at the heart of the family still.
To prepare the children we pre-empted everything. Most importantly, we allowed the children to see/do whatever they wanted: no adults said 'should' or 'shouldn't'. When he died, we explained that Matthias' character, the bit that made him cheeky, laugh, happy, sad and have a sense of humour, all of his being was in heaven and that all we were left with was his skin and bones. Skin and bones, although brutal, was easier to understand. We showed the boys where Matthias would be laid to rest before we put him in the room. The boys were allowed to visit him as often or as little as they wanted. The amount they went in and out naturally diminished. They were told and shown the coffin in the room before Matthias was placed (by my husband and I) in it. When Matthias was in the coffin the boys pushed chairs up to it to continue their process of saying an incredibly loving goodbye. We followed the coffin in our family car to the church where Matthias was able to rest the night until the following day where we would celebrate ten glorious, precious years. An altar frontal was created with all the pictures that his loved ones had made and all Matthias' dearest possessions were laid in front of the altar. The eulogy, although written by me, was read by nine members of the family. My husband started and I ended. 400 people were there to share their love for an incredible child.
We continue our days of grieving very openly, talking, remembering and not being afraid to break down in front of anyone. Pictures everywhere and each child has a small flip photo frame with 12 personally chosen photos of their big brother, a fantastic talking point. We return to CHASE regularly as they were our extended family and I explain my grief as a cycle. The highest level, where I carry Matthias all the time, is very unemotional; the middle is uncomfortable and painful and the lowest is where I break down and love more deeply than ever. After the break I can rise to the highest level where I can continue the cycle and continue carrying on.
The Dying Matters Coalition is led by the National Council for Palliative Care,
the umbrella charity for end of life care in England, Wales and Northern Ireland.
Freephone 08000 21 44 66