Tamara’s story

My story started with food poisoning which lasted two weeks. I had seen the doctor a few times and then discovered I had a bacterial infection which was treated with strong antibiotics. After this I still had lower abdominal pain on and off for days to a week at a time for two months.

As a nurse, I didn’t pay too much attention to every little pain and niggle I had and thought my intestines were just regulating themselves again after the infection. My gut was normally very sensitive any time I got sick, so the constipation and pain didn’t seem too out of the ordinary.

After a couple of months, I decided to see the doctor just to check my symptoms and to have my annual blood test. My GP immediately told me I had chronic/acute appendicitis and needed to go straight to emergency. I remember her words as I was still not convinced, ‘If you wait another week, you could be in crisis.’

The ultrasound showed my appendix was inflamed to the point the ED doctor did not know how I wasn’t more debilitated in my presentation. After a CT, it was confirmed my appendix needed to be removed but the surgical doctor was still not convinced. We waited until the consultant and rest of the team were back in and they decided on a laparoscopy and appendectomy regardless.

The only thing I asked of my husband is that if they rung him during surgery because they found anything else, to NOT let them give me a stoma as it was one of my worst fears. It was my usual preparedness that made me say that to him, but I honestly thought it would be a straightforward procedure.

I woke up with the worst pain I had ever experienced, including worse than my caesarean. I was trying to breathe through the pain as I usually did but had tears running down my face and begged my nurse and the medical team to give me whatever they had to make me not feel it. I ended up with a ketamine infusion and an oxycodone PCA for three days and had the doctors tell me surgery was in fact much different than anticipated.

My appendix was so inflamed, it had adhered to my ovary and my bowel. They managed to ‘peel’ the ovary off, but they had to cut a piece of my bowel out. My keyhole surgery turned into a large incision open surgery.

I spent the next week in hospital trying to push myself to do normal things, like use a toilet instead of a bed pan and walk with my new walking frame because it was the only way I could manage the pain and move around. It was around the 5th day post-surgery that I broke down one morning in front of my nurse as the feeling of being a patient and feeling helpless was not sitting right with me. I was so overwhelmed, and being so used to helping people and being the nurse, it was hard to all of a sudden be the one sitting in the bed waiting for help and not being able to look after myself.

I finally got to go home knowing I could manage my pain with the medications I was on and was struggling to stay in the hospital environment.

Two days after I returned home, the doctor who I had seen every day on doctor’s rounds rung me. He let me know that the samples they sent for pathology had come back positive for appendiceal cancer Stage 2 and T4 bowel cancer. I also had a genetic mutation that caused it all called Lynch syndrome. As we had no family history on either side of any sort of cancer, I was the lucky founder. My next steps were more scans, a follow up with my surgical team and then an oncology appointment to discuss chemotherapy.

I stayed very positive throughout the process and just believed that everything was happening as it should, I was very lucky it was caught early and any treatment I needed was going to be a short course and I could handle it. I was also grateful I was finished having children as they advised me due to the scarring to my ovary, it may be harder to fall pregnant again.

My oncologist then gave me the best news I had heard, that took me a while to process, but my CT was clear of any residual disease. The chemotherapy needed to treat my type of cancer with my genetic condition would be very harsh. He informed us that I could have permanent nerve damage in my hands and feet and the risks would outweigh the benefits. The chemotherapy was more to ‘mop up’ any microscopic cancer cells they couldn’t see and as a preventative in my case.

It was decided chemotherapy was not needed in my case given my age and the potential risks with little benefit. I now have regular monitoring to look forward to and appointments with the Familial Cancer Team to discuss my genetics and what that means for me and my family, including my child.

I am forever grateful to my GP for knowing me well, listening and making such an educated judgement call. I am also so thankful to the hospital teams who were thorough during not only the surgery but in my follow up appointments.

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My one piece of advice:

Keep your bubble small. I am so happy that I only told very few people, my closest people and ones I knew would not put extra stress on the situation. I knew what I wanted my mentality to be and how I would get through this time as smoothly as possible, so I only wanted people supporting me who were going to stay calm and positive with me. It helped because I didn’t really have to hide it much. Everyone already knew I had surgery, the cancer was a secondary outcome and not the reason I had the surgery, so no one suspected any different.