There is really no way to describe it when your told you have stage IV cancer, let alone a very rare type. After the initial shock of learning what I had, the oncologist asked me if I knew who Steve Jobs was, and yup I’m pretty sure most people do. ” Well this is the type of cancer he had, and he managed to live 7 years with it.” That was not the reality I was ready for, and to know he was a billionaire American with every advantage made for a grim outlook. As I already wrote back awhile I was told I probably had 10 to 15 years left to live. When told this my response was, “So, I’m not going to make it to retirement?” “This is what the science tells us so far Stephen.” Was his reply. Now before this my biggest worry was living to long and not saving enough to live or out living everyone I loved, I honestly thought that because I always had remarkable health. So, I implore everyone reading this to look after yourself, eat well and exercise.
Our conversation lasted about fifteen minutes, and to be honest while standing in my bedroom alone talking with him besides what I just told you the rest is a blur and hard to recall. The call ended with the Doctor asking me to come to the hospital now to start some lab work and to get treatment started. “I’ll be right down, then now?” I questioned. “Absolutely, the sooner the better”, was his answer. “We’re waiting for you”. In shock, instead of calling anyone I first made a trip to the hospital, nobody would’ve been able to accompany me anyways, as we were all adjusting to the Covid protocol. I used to live within five minutes from the hospital, so I always walked. I remember it being a sunny, but crisp afternoon and here I was heading to Cancer clinic not far from my house, how could this be?
I’ll never forget that first look you get when the word cancer spills from your mouth, at the door to the hospital is now a checker to screen you for covid symptoms. She asks the questions we’ve all become familiar with now and also asks where I’m heading, “To the cancer clinic” I say. Now, I’ve become familiarly uncomfortable with that look in peoples eyes, but seeing that blend of sadness, pity and fear for the first time really made me realise what I’m dealing with now. She pointed me in the direction of the clinic with a slight, uneasy smile. The Brantford Cancer Clinic is small, as I walk in I’m greeted with the same look I received at the front door from the receptionist. “Can I help you?” she asks. Ah, “My name is Stephen Medhurst, I’m told your expecting me?” “Oh, yes we are” she looks puzzled. This look is another one, I don’t really look like the typical cancer patient, and the person admitting me, checking or testing always does a double take at my health records.
The reception room is empty except for an older lady and from what I can guess she is receiving her treatment, we greet each other with a smile and a quiet understanding I now share with many other patients. A nurse comes to the room with her cart and draws some blood and hands me my first jug for the 24 hr urine collect, that we can now laugh about, how can you not? It’s a big piss jug!! An administrator brings me over a bunch of paperwork to go through, first is the treatment I’m getting, the Sandostatin shots starting at 30mgs. Then papers for a company called, ACCESS, it’s like a third party to help schedule appointments, deal with the pharmacy and your insurance provider. All is signed and in a whirlwind the first event in dealing with my new cancer life is complete, maybe not. On the short walk back home my phone rings, it’s ACCESS, already? The person on the other end is extremely nice and sympathetic, sets me up for my first treatment, which I will have to drive to Cambridge to get for the first while, until all the Covid protocols are sorted out for at home treatment, I still currently go to the lab in Cambridge for injections. She also takes my insurance information and starts a 3 way chat between us, it is very professionally conducted and my only good news of the day comes when we get the news my insurance offers 100% coverage, one less thing to stress about. I thank the ACCESS coordinator and end the call. I remember sitting going to the fridge grabbing a cold beer, sitting at the kitchen table, I haven’t shed a tear yet, but now I have phone calls to make…..
Looking back now, I wish my original oncologist led with something different then the Steve Jobs analogy, being it such a rare type of Cancer I’m going to guess it was one of the few cases I could look into myself. Knowing what I now, know, there really isn’t a good way to explain this to anyone newly diagnosed with it, as every person and case seems to be different. That is why awareness and education is so important about this and also to question your Doctor if you think something is being missed. Doctors are trained when they hear hoof beats to think horses, not zebras……you just never know!!