As a 3 times colon cancer survivor, I think the hardest thing was finding how to contribute the knowledge and insights gained through this ‘cancer journey’ to assist the research, help others and help ‘patch the gaps’ in the system.
I was a fit, active 45 year old when first diagnosed with colon cancer in 2001. No family history or risk factors for any cancer …. so it was quite a shock! A colonoscopy for investigation of anaemia was how I was diagnosed; I’d been feeling absolutely exhausted for a few months.
Immediately I had to decide about clinical trial participation. I agreed to take part in a surgical trial of hemi-colectomy by laparotomy (big cut) vs laparoscopy (keyhole surgery). I was randomised to the ‘big cut’ usual care control group. Time to throw away the bikini! Shortly after surgery, signs of cancer were found in 1 lymph node and I commenced 6 months of fluorouracil/leucovorin chemotherapy. I was the breadwinner while my husband was doing a PhD, so I managed to mostly work full-time despite the chemo.
With regular follow-up checks of the surgical trial, we thought all was going well until the 4 year CEA blood test scored 25, and a CT scan revealed a large liver secondary. I was lucky to be eligible for liver surgery, a right hemi-hepatectomy to remove the tumour. The next 6 month ultrasound scan was good, but at 12 months my CEA was 46 and an inoperable 5cm liver tumour was found. Five months of FOLFOX chemo was tough, along with the daily questionnaires of a research study, but the tumour shrank enough for surgery to become an option.
Now more than 6 years since the 3rd major surgery, I’m very much alive and very actively trying to ‘give back’ and use my cancer knowledge and experience in a positive way.
There are still some personal challenges: the fear of recurrence; peripheral neuropathy in my hands, feet, legs; fatigue and some bowel function issues.
But there are positives: Most importantly, I can see outcomes from the advocacy work I do, both as an AGITG CAP member and in many other ways. Personal positives are knowing the caring support of family, old friends and new-found friends that surrounds me; learning meditation as a coping life-skill that I wish I’d learnt 30 years ago; AND the joy from taking up regular more serious distance cycling with a group of cancer survivors. I now know I can do things I didn’t think I could, through mentoring and support. Finding the importance of exercise means I’m stronger, physically and mentally, than even before cancer!