Thomas' bowel cancer story (diagnosed age 29, VIC)

I originally noticed rectal bleeding in March 2009. At the time I was 27 years old. After a couple of days of blood in my stool I booked an appointment with a local GP. Several days later I attended the GP appointment and the Doctor performed a rectal exam. The Doctor advised me all was fine in the rectum, and said the bleeding was probably the result of hemorrhoids. I was, however, referred to a specialist for a colonoscopy to make sure. I sat on the referral for a week or two and then booked in the colonoscopy.
At the time of the initial symptoms I was living and working in Tasmania as a seasonal worker in a winery, then working in casual jobs before I planned to leave to work at a winery in Germany. The casual job I was employed in came to an end earlier than planned and before the time of the colonoscopy. I was short on money at the time and foolishly decided that I would leave Tasmania and spend a few weeks in Adelaide with family and friends prior to leaving for Germany - this would both save me money and give me an opportunity to say my goodbyes. And so, I cancelled the colonoscopy and jumped in my car and caught the Spirit of Tasmania to Melbourne then drove to Adelaide.
This decision would prove to be the most important yet fatal decision I would make in my life, as the bleeding subsided and I forgot all about the symptoms for a couple of years. Two years later the symptoms returned. I was experiencing rectal bleeding, mucus discharge, and abdominal bloating and cramping. I decided it was time I got back to the doctor and got checked out. By now I was living and working in Melbourne and had recently moved in with my girlfriend Marnie. I saw a GP in Melbourne and was booked straight in for a colonoscopy. This time I kept my colonoscopy appointment and was subsequently diagnosed with stage 3 rectal cancer, and so the process began.
Initial treatment options were:
- radiotherapy
- chemotherapy
- surgery: ultra low anterior bowel resection, I currently have an ileostomy.
The chemotherapy I was given was Fluorouracil (5-FU), Irinotecan (Camptosar), Oxaliplatin (Eloxatin), FOLFOXIRI (5-FU + Oxaliplatin + Irinotec). These caused a combination of side effects:
- nausea
- hand and foot syndrome
- 'chemo-brain'
- temperature sensitivity
- dry skin
- dry mouth
- face, scalp and upper torso rash
- UV sensitivity
- mouth ulcers
- hair thinning
- slower healing of wounds
- infertility
- changes to taste and smell
I was also administered a monoclonal antibody - Cetuximab (Erbitux) along side the chemotherapies.
The radiotherapy caused abdominal bloating, abdominal cramping, diarrhea and infertility.
I have since been diagnosed with stage 4 bowel cancer with metastasis in both lungs. I have started a trial drug in October 2014, to help inhibit any further growth of the tumour. So far I have had two scans since starting the drug which has shown no further growth but it has not yet reduced the size of the tumours, so I am hoping this will change by the time I have my next scan.
At different stages throughout my treatment I have had various issues with food. During initial chemotherapy and radiotherapy food taste and smell was affected and I could not tolerate strong smells and flavours. I lived off eggs, white carbohydrates and simple foods. I was not tolerant of fiber. After I had surgery and had a stoma I was able to tolerate all foods. The stoma was reversed and due to an anastomosis I was again unable to tolerate fibrous foods. Due to the anastomosis I had the stoma reversed yet again and since then I have been able to tolerate all foods.
On the issue of dietary advice, no medical professional has advised that I make dietary changes. This is something I have found very strange, and after doing much personal independent research I have completely changed my diet to avoid processed foods, carbohydrates generally, and have begun to incorporate 'cancer fighting foods' into my diet. At the moment I try to avoid too much red meat, sugar, and carbohydrates and processed foods generally. I must say that I am quite disappointed that the medical professionals I have dealt with had not discussed diet with me. The nutritionists I dealt with specifically are very focused on patients maintaining their weight rather than eating a healthy (majority) plant based, carbohydrate free, diet.
I have tried to maintain a positive attitude throughout the period of my cancer, though inevitably I have had many periods where I have struggled emotionally and psychologically.
If you are reading this and my experience sounds familiar and your diagnosis is only early days, I would recommend you remain hopeful. If you lose hope, you can go down hill psychologically very rapidly. I am still hopeful that there is more that can be done in my situation and that new treatments are being developed all the time. Just remain positive and focused.
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