As told by Rob’s brother, Founder & CEO of The Robin Cancer Trust, Toby Freeman.
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. 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 s**t 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. S**t 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.
After Rob had a different course of chemotherapy during August to wipe out the pre-leukemic cells, Adam donated his stem cells. Rob came home after a few weeks spent on Bodley Scott ward at St. Barts and then we played the ultimate waiting game trying not to think about the options if it hadn’t worked. The next clinic appointment in September meant we couldn’t ignore these options anymore, the results showed that the stem cell transplant hadn’t worked sufficiently and the leukemic cells were rising. Rob was re-admitted the next day for another course of chemotherapy with Adam on standby to donate once more. Rob had yet another bone marrow biopsy taken on the day he was discharged in early October and the results would tell us when he could receive Adam’s stem cells. The day came for Rob’s clinic appointment and I held my breath as I headed off to work expecting a call from my parents with the news of a date for the next stem cell transplant. I can still remember getting a phone-call from my mum when I was in our local Co-op of all places; she was balling her eyes out and telling me to get home quick. I knew then what she was going to tell me. Imagine finding out your brother is going to die in the juice aisle in your local convenience store. It’s quite surreal. I got home swiftly and there was my brother was sitting on the sofa. I remember thinking how f**ked off he looked. Not sad or upset in any way. Just thoroughly f**ked off. I stood in the middle of the room and said ‘So what’s going on then?’ hoping he’d say something like ‘Ah it was all a mistake, they were wrong and I’m cancer free! Let’s get a beer.’ But no such luck. ‘There’s nothing else they can do. I’m going to die’ Straight to the point, no time to waste I suppose, but I felt my heart drop and my world fall into despair. That night we had some family over and we all tried to get our heads around what was going on, but to be honest I couldn’t even up until the day he died. The next couple of months were great; we all spent as much time as we could together, going to the zoo, eating out, playing trivial pursuit and such. We had some pretty tough conversations and Rob planned his own funeral (which was amazing by the way). He even helped me write my eulogy to him and kept his dark sense of humour about dying right until the end.
It was odd though; it never felt like it was going to end even though you were aware that Rob wasn’t going to be around forever. It’s hard to explain all the emotions and feelings, as I don’t think my mind would let me process them. Rob passed away on the 10th December 2011 in our local hospice, St. Helena Hospice, surrounded by his family and hearing how much we loved him. He only let go when my mum gave him permission to and I was honoured to hold his hand until the very end. 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 we would not let his death be in vain. That is the sole reason behind The Robin Cancer Trust. If we can save just one life by telling Rob’s story and raising awareness for Germ-Cell Cancers then setting up the charity will have been worth it. 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 lover. Rob could be you; your child; your mate; your colleague or your lover. Cancer doesn’t discriminate age or gender so we are all vulnerable to its tragedy. I thank you for taking the time to read Rob’s story and we hope it helps you with your own.