Alexander Clarke was diagnosed with a soft tissue sarcoma aged 19, meaning he was old enough to make his own treatment choices. His mum Denise describes how he helped lessen their worries by involving them throughout, even when there were no further treatment options left for him.
When Alexander was diagnosed, he’d been full of hope for the future and enjoying life at Birmingham University. He’d made some wonderful friends and was experiencing his first taste of freedom away from home. It was a time to discover more about himself and learn to make his own decisions, big and small. He loved his new independence.
So, it was a devastating blow to have to return home and give up so much of this new-found freedom and once again be subject to mum and dad ‘fussing around’. As parents, we wanted and needed to be strong for him as he began his treatment, but this posed certain questions about how we could support him without appearing to interfere.
As a 19-year-old, Alexander would be an adult patient, even though he had a paediatric-type tumour and would be treated mainly by paediatricians. How would this work and how would Alexander and the doctors feel about parental involvement? Should we keep in the background or could we have some input when asked?
It was a major concern but resolved itself well, thanks to Alexander’s skill in knowing when to invite us to consultations and when to make tough decisions about the next stage of treatment. It must have been difficult for him to balance being ‘grown up’ enough to cope but at the same time wanting mum and dad there to prop him up when he needed it most.
He took control and helped us to confront the reality of the situation. He made the most uncertain and difficult time of our lives so much easier to bear. Alexander had chosen to include us throughout and it could all have been so very different had he not insisted that it was his wish to have us ‘on board’. The doctors respected his decision too.
We are forever grateful and the fear of having to ‘stand back’, watch and wait, became an irrelevance. Alexander was our guide and to a certain extent, to the doctors as well. At a time when his self-esteem might have crumbled, he remained confident and focused, giving us added courage and strength. He also told us, in no uncertain terms, when to make ourselves scarce during certain hospital visits (on an adult ward, thankfully) so he could have time alone with his girlfriend or brother, or even for chill out time at home! It was so important for us to listen to him and to offer advice when he asked us, which was often. When no more treatment options were left, Alexander chose to live his remaining weeks to the full, visiting Egypt and swimming with dolphins, working with St John Ambulance, catching up with friends, spending precious family time at home and even sorting things for his own church service.
He so enriched and blessed us with the love and courage he showed and shared. His choice to involve us and stay upbeat and positive at such a difficult time has brought huge pride and comfort ever since. Alexander was one amazing, brave, thoughtful and loving son and a wonderful young man who taught us so much.
