Day 1-16 - Cancer -Where do we go now?

It’s incredible once you start speaking to people. Everyone knows someone who’s been struck by cancer. They know someone going through it now, or they someone living with it daily. We’ve been overwhelmed with support and kindness and knowing we’re not alone really helps.

I have no idea of the normal process for anything medical. We’ve never needed it. 

My brother had needed urgent hospital treatment, but unfortunately the NHS was pretty poor at that time and were unable to support him. It was a horrible experience and once the consultant heard that we were moving him to a private facility had said “I didn’t know they were prepared to pay”. That shocked me. Should it matter if you had money available? I vowed that we would never be in that position again.  I took out private medical insurance so that we’d have to go through that. I’m certain that 20 years later the position has changed. I have nothing but admiration and support for the NHS. They have certainly kept this country going and they work so incredibly hard. 

Initially, we went to a private Dr because of Mikes back pain. We couldn’t get an appointment with the local NHS Dr, and to be honest we hadn’t used them in years, so this was the simplest, quickest and easiest route.  The back pain had been getting worse. Blood tests came back normal and an X-ray showed nothing abnormal. Mike then mentioned to the Doctor that he’d sometimes have an issue swallowing food...like it was getting stuck in the chest. He was referred to a Gastroenterologist really very quickly. The next day he had an gastroscopy. The surgeon told Mike at the procedure that he was 75% sure it was cancer. I clung to the 25%, that it wasn’t.  He was immediately called in for a CT scan the next day. That evening, they called asking Mike to go in for another consultation. 

I’d been sitting in the car on these visits to the hospital during diagnosis and tests. I knew I wasn’t able to go in with him due to COVID, and rightly so.  Mike phoned me asking me to meet the nurse at the front doors. They wanted to speak with me too. The consultant sat behind his desk with his steepled hands and looked at us with his sad, pitying eyes. I could only see the nurses eyes as the rest of her face was hidden by the mask we all wear now. She too, had the ‘look’.  I looked at Mike. His eyes were clouded with the thoughts racing through his mind. He wasn’t looking any where except inward. 

“It IS cancer” said the consultant. He paused...for a long time. I don’t know what for. Maybe they were expecting me to scream. I usually have questions, but at this point I was rendered speechless, and I’ve been speechless ever since. 

The consultant told us that they’d refer us to the oncologist, but we wouldn’t hear from her for a week as she was away. Don’t know where she’s going, we’re still in lockdown! Mind you, I can’t blame her, a week away in a cottage somewhere would be a welcome change to the ravages of disease she must see every day.  I guess he could see the panic on our faces, as he said it wouldn’t make much of a difference...the week wait. 

I, fortunately, begged to differ and fortunately we have private health care. We knew we couldn’t rely on others to make decisions for us, we knew we needed to move quickly. It was a bank holiday weekend so 3 days were lost to us already.

The drive to the oncologist and treatment suite they had recommended could take an hour each way and as we reflected on the journey home, it was too long a wait and too long a drive. The drive there would be debilitating enough for Mike, without the treatment. He was still in pain and it was getting worse. Did we know what therapies this oncologist could offer? Would we agree with her?  We needed someone near, we needed someone now, and we needed to be in London, but how the heck do we find someone that would suit his needs? It seemed, even at this seemingly early stage, they’d given up on Mike. Would we find that same attitude in all of the others?

Mike and I, oddly think as one. When he thinks something, I’m always on his page and vice versa....except when either of us are annoyed or angry, then the other one offers the alternative which calms the other one down. It’s always been like this. Luckily. As we talked on the journey home, we knew we wanted a “can do, will do”, we wanted someone with fire, positivity, an oncologist with access to every possible treatment, who’d researched and someone to give us hope. 

I jumped on the Internet (that amazing tool that gives you so much information that is so abused and used for purposes that can drag you into a deep worm hole!). I looked at the private health website for hospitals that could help, then looked for Drs and oncologists that dealt with the specific cancer area. I checked where they worked from and I checked what therapies they use. Looking back, I probably didn’t go down the most conventional route, but I knew it didn’t matter now. It would take too long to go through the NHS, another referral, more scans...more waiting. We’d decided to wait for the original oncologist, just incase the others didn’t work out.

On Friday, I fired off a few emails to the few Oncologists I’d narrowed down, and waited until Tuesday. There was nothing else to do. At 9 am I opened my emails and had replies from two explaining that it wasn’t their area, however one recommended the third. By 9.20am, the third’s private secretary had called and squeezed us in for a face to face consultation in 2 days time despite a full day of consultations! 

Fingers crossed and another journey starting!