The following story was written by Robin’s brother, our Founder & CEO, Toby, shortly after Robin passed away. We have left it raw and uncut since we founded The Robin Cancer Trust – we hope it helps you understand why we do what we do.
"We want to prevent another family from going through what we did.
I can always remember Rob playing sport. Whether it was cricket, rugby, basketball or football Rob always seemed to excel (much to my annoyance!) My brother and sport were synonymous throughout our youth. Being diagnosed with ME aged just 12 was soul-destroying for him; not only could he no longer play his beloved sports but socialising became almost impossible and eventually school did too. This left Rob isolated and unable to have the usual teenage experience, not to say that he missed out on alcohol and girls, I mean look at the guy right?! It wasn’t until he was 17 that his symptoms subsided and he could re-ignite his love for sport and focus on football.
I will always remember the first season we ever played together at over-18’s level; he was two years older than me so this was the only chance we’d had to be in the same team. He was rather good to say the least. He never stopped running and he had a pretty tasty left foot to boot. But as it always was for him, nothing was easy. Over the next few seasons he earned himself the nickname ‘Sicknote’ as he ruptured his ACL once and tore his cartilage in both knees. But that didn’t deter him; just as he had throughout his life he put the hard work in and got back to it. By the time his 23rd birthday came along in 2010 he had moved out, he was playing football regularly, hitting the gym three times a week and working full time whilst studying at Uni. He had his whole life together and was looking forward to the future. Towards the end of 2010, I can’t honestly say when, Rob picked up a cough. Just your average cough to begin with, the sort that no 23 year old would even bat an eye-lid at, nothing to worry about, as he was the fittest bloke anyone knew! It wasn’t until he moved back home in December 2010 that my mother noticed his cough had become more of a dry bark. Still there was no real reason to worry, as it was probably a virus yeah? Even the persistent night-sweats were just stress from working too much? Then in January 2011 he started to get severe arm ache and a very swollen hand; even then he wouldn’t go to the doctors without some world-class nagging!
After no diagnosis from our GP and a lot more worrying it was time for a trip up to the local walk-in centre the next day. Then shit got real. (Excuse my language but it’s a quote from one my brother’s favourite films – Bad Boys 2 – and to be honest it sums up how fast and devastating a cancer diagnosis can be) From a diagnosis of a blood clot in his left arm, a week went by in hospital until a diagnosis of a Mediastinal Germ-Cell Tumour in his chest the size of a grapefruit. Shit got real, real fast. Then we saw the specialist in Colchester who told us that if left untreated Rob would be dead within 2 months and he referred Rob to the specialist oncology team at St. Bartholomew’s Hospital in London. No time for all of this to sink in, or even the gravity of the situation to hit home and Rob was being whisked to ward 5 on the King George V wing at St. Barts for treatment. The plan was always to have his GAMEC chemotherapy to shrink the tumour and then have an operation to remove it. It wouldn’t be a pleasant operation as it meant splitting the sternum and removing the tumour from around the lung and heart, but a small price to pay none-the-less.
Unfortunately, we never got that far.
Even though four courses of chemotherapy, during the period of February through to April, managed to halt the growth and even showed signs of shrinking the tumour enough to plan for the operation to go ahead in June, another problem occurred. The platelet levels, which are the blood-clotting agent in blood, refused to rise sufficiently to allow Rob’s operation to go ahead safely and therefore he had to have a bone-marrow biopsy taken to find out the cause. I’m not sure if you know what a bone-marrow biopsy entails but it’s basically sticking a rather large needle into the bone… Not pleasant. As if the procedure wasn’t bad enough, the results were devastating. Rob now had pre-leukemic cells in his blood. A 1% chance of this happening and of course it happened to ‘Sicknote’. The only option was a stem-cell replacement; luckily my brother Adam was a perfect match. Good news eh? Maybe things were looking up for Rob.
I can’t really explain how much we miss him; he was the laughter in our lives and the joy in our hearts. We always said that something good had to come of this tragic event; that Rob would never just be a photograph on the wall. If by telling Rob’s story we can stop another family from going through what we did, or if we can encourage a young man to start checking himself regularly by standing in a field with a giant pair of testicles on our heads, or if we can empower a young woman to listen to her body and visit her GP by creating a video for social media – then Rob’s death will not have been in vain. We honour him with the work we do in his name.
I hope you understand that the reason I have told Rob’s story like this is because although he was the most special person in our lives, to me a brother and a best friend, to anyone else he was just someone’s child; their mate; their colleague; their partner… Rob could be you; your child; your mate; your colleague or your partner – cancer doesn’t discriminate, so we are all vulnerable to its tragedy.
Thank you for taking the time to read Rob’s story, I hope it helps you with your own.