Written by Alastair's mum, Dorothy.
My beautiful first born son Alastair was diagnosed with mediastinal germ cell cancer in March 2019. We had never heard of it before. During his treatment period, Alastair spent much of his time researching his tumour and came across the Robin Cancer Trust. Robin’s story resonated with him and sadly Alastair’s experience mirrored Robin’s through to his ultimate passing in May 2020 at the age of 29 after 14 months of treatment. Alastair got very cross when people spoke about ‘battling cancer.’ It wasn’t a battle he said and dying doesn’t mean you failed to win a fight to live - it was just that your cancer was a rotten one. As his family we are keen to alert people to the signs that might have been picked up earlier for Ali and perhaps given him a longer or at least better quality of life. This is his story.
Alastair had back pain. Over a couple of months, his GP explored a range of options to no avail until Ali couldn’t walk. A week in Leicester Infirmary eventually led to a diagnosis of germ cell cancer and a blue light journey to Nottingham City Hospital. A 3 month course of treatment started to shrink the tumour. In spite of the limited physio offered to him he got his own private physiotherapist and regained his mobility. This made a huge difference to his quality of life but he had to find the help he needed independently of what was available to him on the NHS. We were able to get out for walks and for lunch. Surgery then removed the final remains of the germ cell tumour after which they told him the cancer was gone. But in a matter of weeks they found further spread. Like Robin, Ali embarked on stem cell treatment as phase 3 of a clinical trial. During his second spell in isolation, his back was so painful he insisted on being scanned in the face of some medical reluctance. It immediately became clear that the cancer had metastasised into sarcoma which at that point had spread through soft and hard tissue, particularly his spine. He had to wait in further isolation to rebuild his immunity before he could leave hospital.
From that point he was told there was no cure but that there was potential to slow the spread and in February 2020 he embarked on a last ditch chemo course to try to minimise the spread and extend his life. Eventually in April, we were told that although, ironically, the germ cell tumour had gone, due to the sarcoma he had very little time left. At that point we did not realise how little time he actually would have. He spent two lonely isolated weeks due to the lockdown, one in hospital followed by a week in his local hospice. I can only imagine how a 29 year old man contemplates the end of his life in those circumstances. He did get one final week at home and I was able to spend his last few days there and ultimately back in the hospice where I was with him when he died. That experience will live with me forever and plays on a continuous loop in my head. But actually I feel very privileged to have been there with him. Many in this current Covid world do not get to be there with their loved ones at the end.
Alastair went through so much with courage and resilience but despite his positivity and mental strength we lost him. He left his fiancée bereft 2 months before their wedding and his 30th birthday. He left Latimer Primary school without an amazing inspirational teacher having made a difference to so many children’s lives. He left me without the son I gave life to. If you want to rationalise loss I haven’t got the answers but I am always keen to share my experiences. It is so important to talk and share. Ali wanted to support the Robin Cancer Trust and I hope that by telling his story, I am going some way towards doing that and honouring his life. I have two messages that I want to get out there just to raise awareness and I thank the Robin Cancer Trust for letting me do this:
1. Do not ignore back pain. Fight for the right to have scans regardless of what your GP might tell you about resources, budgets, sporting injuries, painkillers. You know your own body better than anyone. If it doesn’t feel right it probably isn’t.
2. Germ cell tumours although relatively ‘self-contained’ can metastasise into sarcoma… Not always but they can and we were not aware of this. It probably wouldn’t have changed anything if we had known but as soon as that happened, he didn’t stand a chance. Ironically for Ali, his germ cell tumour did go but it was too late. So, research and ask questions.