I eventually got a referral to the Regional Cancer Centre on the 17th of January. every single day I woke up thinking about how much more the cancer might have spread from the diagnosis on November. I meet a wonderful oncologist who I felt I clicked with immediately. She explained I was too late for surgery and chemotherapy but I had 2 other options to lengthen my life. She talked to me like I was an adult, like I was front and centre of this, like I mattered. I feel hopeful, confident in her and left very calm. I was only home 10 minutes when she called later that afternoon to ask me to return, my hyponatremia was back. She explained I couldn't start any treatment until my potassium and sodium levels were raised. So spent the next 7 days back in hospital. As I got better, they gave me a blast of radiation to tackle the pain in my ribs and full body scan which confirmed the cancer had spread into the chest wall. During this time, my new keyworker saw me at least once a day but I also had an array of visitors including, my oncologist, a renal consultant, family support workers, social workers, two OTs (home with a stick), a dietician, some kind of finance and benefits person, a counsellor came every morning (and took me off to a private room where I cried every morning in peace) and two lovely Macmillan staff who came every day just to check up on me. I never felt as well looked after and came out of hospital determined to get well enough to start a treatment before it got any worse. I'd just point out here, no-one will give me a time span, or any idea how long I've got, I understand there are too many variables but I'd still like to know and no-one will confirm or deny the urologists grim assessment.
So I got out of hospital and on the 25th of Jan I started a drug call Cabometyx (it was delivered to my door like a pizza!). It is a tiny tablet that I take once a day for 28 days, then a break of 7 days repeated 3 times before I have another scan to see how effective it it. Basically it is designed to attack the enzymes in the cancer that make it spread further. In a small number of people it apparently shrunk their tumours too. I'm on Day 10 or something and have had absolutely no side effects and because of the recent hyponatremia, I see the oncology and have my bloods done weekly. The long and the short of it is I feel I am having the best treatment available. My sisters are frantically searching for places across the globe that will treat Stage 4 Renal Cell Carcinoma that has metastasized to the lungs, ribs and chest wall. In case this and the only other drug available doesn't work. So Far, they've found a place in Houston, Texas and one in Mexico. Both have had some success in lengthening people lives who are in a similar position to me. Maybe I might need that option but I trust the wonderful team at the Regional Cancer Centre right now.
So essentially, I am in a better place physically and mentally than I was a month ago. I couldn't speak without crying, I was in pain, I was tired all the time and seemed to sleeping my life away in a chair. I'm feeling really good right now and have cashed in my life insurance, paid off my mortgage and I'm waiting for the go-ahead to blow the rest on a cruise! Yes, at least once a day I get a virtually boot in the stomach when it hits me what is happening to me but for the rest of the time, I'm trying to do stuff, meet old friends, go to the seaside for a coffee, no big mad stuff but just spending time with people who love me. My own NHS Trust took my life from me and I have been sentenced to death but I sure as hell won't go out quietly. I'll update on the Serious Adverse Incident Inquiry next time.
Meanwhile, thank you to whoever reads this, I hope someone reads this who has just been diagnosed and takes some comfort from the fact that that when symptoms are managed, you can get some of your life back, just don't give in and welcome your Macmillan with open arms, you won't regret it xxxxx
