Bowel cancer: pain, treatments and mental health
3 Dec 2018 • 5 comments
Meet one of our members, @Cocker, who opens up about the psychological impact that having and surviving colorectal cancer has had on him.
1, Hi Stuart, thank you for agreeing to speak with us, could you introduce yourself in a few words?
I’m Stuart Cock, I’ve just turned 44 years old. I’m married Lisa and we have 4 children, Findley (14), Oscar (12), Hana (10) and Florence (6). I work as a technical specialist for Jaguar Land Rover. I am a life long Rugby player and enthusiast. On March 21st 2017 (Iwas 42) after a colonoscopy, the doctor who performed the procedure said “I’m pretty sure its cancer” and my life flipped upside down.
2, How surprised were you to learn that you had bowel cancer? What symptoms were you experiencing that prompted you to go to the doctor?
I was completely surprised, it was such a shock. At the end of Jan 2017 I had a bout of gastroenteritis over the course of 4 days. Mild tummy pain persisted for a couple of weeks after that and I was finding that I was breathless after walking up the stairs. After a visit to the doctor and subsequent blood tests I was found to be severely anaemic. The doctor explained that it was most likely caused by bleeding in my digestive tract somewhere. Most likely for a man of my age with a busy stressful job and young family was a gastric ulcer. Although it was always a possibility I never seriously considered that it might be cancer. I was so shocked, the room span and I nearly fell off my chair when he told me what he found...
3, What treatment path did you choose? Was an ileostomy ever considered?
I never really choose a treatment path, I just did what the doctors told me to do. I had a right semi-colectomy (Removal of the right half of my large intestine) on the 28th April 2017. The surgeon was confident that he could conduct the surgery via keyhole. Once the tumour and the lymph nodes were examined it was found that that the cancer cells had started to migrate into the lymph system therefore Chemotherapy was offered. I had 6 months of chemo on 2 different types of drugs.
4, What sort of pain did you experience during and after treatment?
When I woke from surgery the pain was quite intense but, I recovered quite quickly. I was able to dress and shower myself, very slowly, the day after surgery and could walk short distances around the ward.
5, Were you happy with your medical team?
The medical team were amazing. I cannot fault their knowledge, skill or care. They saved my life.
6, You mentioned before the impact that having cancer has had on your mental health, do you feel that mental health issues are catered for during cancer treatment?
I am currently being treated for Anxiety, depression and PTSD. Honestly the mental health aspect of cancer I think is poorly catered for. No one in the medical team asked how I was doing mentally or offered any directions for help. I may be partly to blame as I didn’t actively seek help during my treatment. That said, the people I had contact with at the time were the surgical team and the oncology team and mental health is not really their job.
7, How did you feel after your cancer treatment had ended?
When the treatment ends and you have the end of treatment scan results that confirm “No Evidence of Disease” it feels great, as you might expect! But since the diagnosis I had contact with the medical team several times a week, there was always Oncology appointments, PICC line appointments and many other things to occupy yourself with. Suddenly they say “you’re all done, see you in 6 months for a scan and results”. It’s like you’ve been listening to the radio at full volume for 9 months and then suddenly it’s switched off and there is nothing but silence.
For a cancer patient that is a really difficult time, everyone who I have spoken with says the same thing. You suddenly realise that you are out there on your own and no one is checking in on you.
8, What did you do to seek support during and after your cancer treatment?
After a while I used the private medical scheme through my company to access psychological support from a clinical psychologist. I was experiencing some terrible flash backs to the moment that the doctor said “I’m pretty sure its cancer”, they call it re-experiencing and it is honestly exactly like being back in the room, the sound, the smell, the fear and shock all came flooding back several times a day. I was also suffering from short-term memory problems, concentration issues, hyper vigilance (sensitive to loud noises) and a few other things. My psychologist suspected that I was suffering from PTSD and so, in conjunction with my GP, referred me to a psychiatrist. He very quickly confirmed the diagnosis of PTSD and commenced treatment accordingly. The flash backs went away very quickly which was a huge relief. I still suffer from anxiety and depression, the memory problems are still there but, I’m getting treatment and hope that I will get back to my old self.
9, What did you find the most difficult aspect of having cancer, both physically and psychologically?
The first and most obvious physical difficulty is the change in bowl function after having half my large bowel removed, it’s not really bad but, it is different and I need to take a bit more care about what I eat. Then there were the physical effects of the chemotherapy, the nausea and fatigue. The nausea is fairly constant over the treatment period but, the fatigue builds with each treatment cycle. Psychologically the hardest part is the fear of the future both for myself and for my family. It is impossible to say that anyone is cured of cancer for at least 5 years after diagnosis and then when you look at what doctors call “cured” it still represents a significantly higher risk of reoccurrence than someone who hasn’t had cancer. So my future is not assured in any way. I had stage-3 bowel cancer, which, according to Cancer Research UK has a 5 year survival of 65%...means a 35% mortality rate within 5 years…for a person at 44 years old with a young family that is a very hard number to live with day to day.
10, what did you do to keep your spirits up during difficult times?
There have been some very dark times as you may imagine! The best tonic is to spend time with my friends and family! Doesn’t matter what Im doing with them, just spending time is important. I also like to exercise, its been a long road back to fitness but Im on the path and loving it. Dedicating some time to fund raising and and raising awareness also helps me a great deal.
11, What advice would you have for family members and friends of those who are suffering from cancer? Was there anything you wish someone could have said to you during your diagnosis and treatment?
Most important thing: Don’t google anything when you are first diagnosed, you’ll scare yourself too much! Listen to your medical team and do exactly what they tell you to do and if something doesn’t feel right tell them immediately. My surgeon told me that the most important thing for me was to listen to my wife! LOL!
In all seriousness I unfortunately had to put this into practice very recently. My mother in law was diagnosed with a rare and incurable cancer which was already quite advanced on the 14th of September this year. I was with her when she was told of the diagnosis, I was with her through each meeting with her oncologists etc and was with her through her first round of chemo. I spoke with her either face-to-face or on the phone every day to offer advice, guidance and comfort. Sadly, on the 30th of October she died as a result of a heart attack caused by a pulmonary embolism. It is likely that the pulmonary embolism was the result of the cancer treatment…It is a risk that they warn you about when you start chemo...
12, You are very active now in creating awareness for bowel cancer, what plans do you have on the horizon to continue spreading awareness?
I’m running the London Marathon in 2019 and am training hard for that. I am documenting my training on social media and Youtube. In parallel, I will also be using the same media to spread the word of symptoms, signs, treatment etc. If one person reads/hears that and then seeks medical advice that helps them…then my job will have been worth while. I am also now a Bowel Cancer UK health awareness volunteer and am taking an active part in delivering health awareness talks to companies and organisations.