Bowel cancer story

It’s bowel cancer awareness month so I thought I’d share a case from my research study. I was writing it up to get my head around it and I thought others might find it interesting. It’s unapologetically long and in narrative form, using as many of the participant’s own words as possible.

I wanted to share this post in part to emphasise the role that primary care providers can play in cancer care, especially in the period between detection and connection to the cancer care team which can be weeks or months.*

I was greeted by the small dog before I even made it to the front door. A friendly kind of yapping, excited for company. When the dog’s owner arrived I could see they were a perfect pair. Shirley had a kind looking face. An older woman, soft around the edges, with a warm smile.

Despite her gentle nature, it was clear Shirley had experienced difficult times in her life. Her softly-spoken accent gave away her Northern Irish origins. She and her husband had made their journey to Australia in the mid-1970s, leaving behind a homeland in a state of unrest. They made Australia their permanent family home.

The past decade had been difficult for Shirley. Her son died suddenly, sending her into a reactive depression. This was managed adequately with psychotherapy and antidepressants, until her husband died a short number of years after and it worsened once again. She felt that it was now well controlled and was comfortable with her ongoing use of antidepressants to help keep it this way.

I’m never coming off [antidepressants] cause it makes you feel good. Some people say you can’t stay on it forever but I say I don’t care, as long as you feel good it works doesn’t it, you feel better.

I was visiting Shirley in her home, where she lived with her small dog. Her home was part of a lifestyle village, although you’d never know it. This provided Shirley with an added layer of support, security and connection to a local community that helped her feel independent and safe in her home; something that had come in handy during the month of December in the year prior to our interview.

I went into the doctor thinking I had indigestion and I was taking bottles and bottles I was buying each week of Mylanta. And the thing was, the Mylanta was making it better, so I think the Mylanta was curing it and the pain was going away you know. So I was just sent to the doctor for a prescription one day and I said to her could you give me something for indigestion and she says oh I’ll not give you anything until I see what you’ve actually got. She’s a young girl and she’s very very thorough. So she sent me for all these tests, but then two weeks I was in, it was pretty quick. The [hospital] they took me in to just to see the surgeon after getting the results and they kept me in. It was all done by Christmas

When Shirley says “all done by Christmas” she’s talking about her surgery. This was just the start of her cancer journey, which in reality had started long before her visit to the GP. In addition to Shirley’s self-initiated use of Mylanta, she’d also been prescribed buscopan on an earlier occasion to treat her sore stomach and oral iron supplements more recently. In hindsight, it seems obvious to connect these types of medicines and symptoms to bowel cancer, but when they occur as part of the mess of real life it often goes unrecognised.

Another indicator recognised by Shirley only in circumspect was her weight loss.

I was losing lots of weight. I bought the wee man [dog] and we’d go walking…And we’d walk and walk cause I was trying to lose weight and it perhaps deceived me a bit you know cause my sister said to me you’re losing too much weight but I just thought she was jealous.

When Shirley visited her GP in December her doctor insisted on taking steps to identify the underlying cause of Shirley’s gastrointestinal issues. Shirley booked herself in for an endoscopy and colonoscopy, opting to pay for a private appointment to eliminate any anxiety around potential delay given the Christmas period. She was seen promptly and booked in for surgery shortly after.

Shirley followed the instructions given to her in preparation for her surgery

When I had the operation I had to stop one of my medicines. What one was it now. The big white one. So I was glad they stopped it because it was horrible. It might’ve been my gout. Oh god, I can’t help you with that one, I forget now. And they kept me on most of them. You take them all in with you.

Her operation went smoothly and she received her formal diagnosis of colorectal cancer during her admission.

I had my operation and I was in the hospital, it must’ve been five or six days, when he came up to tell me. And when he [the Surgeon] told me he sort of shrugged his shoulders and I said oh I’m going to die

Shirley described this initial period as the most difficult

It just scares you so much. Like its, that first week, and then you calm down a wee bit.

When you first get it you think of yourself dead and buried like. Oh when I was in the hospital for those four, no seven days at the beginning I was like awful After me operation when they told me everything…Every doctor has a different attitude and a doctor would come in and I’d be am I going to die and what about my little [dog] because I was worried about who was going to look after him

And then at home I started settling down a bit. Then I’d seen my own doctor, so I’d seen her and I was just feeling a bit better as the time went

Recovery from surgery went smoothly, but did result in a period of pain and discomfort which her GP helped her to manage

Well the oxycodone, I think that’s the one they gave me when I left the hospital for pain relief, so you can’t stay on it for very long. I think that’s what that was. I think I ran out of that and the doctor gave me one more prescription, then she didn’t want me to have any more of that, and I was lucky I didn’t need any more of it. It was, you know when you get out when you’ve had your operation and you’re sore getting into bed or trying to get out of bed…Oh, going to the toilet was terrible

It was around five weeks after her surgery that Shirley first connected with her Medical Oncologist and learned what had happened during her surgery.

Surgery took out my, what was it, ovary, one of my tubes and gall bladder, and what was the other thing? I forget, what’s left of me…Appendix. So there’s nothing down this side. But I didn’t know they’d taken all that til I’d seen the chemo doctor. Because when I’d seen my specialist, she was going on holidays the next day, for 10 days, so I didn’t get to see her. And I just seen who’d taken over from her after the operation. And so nobody told me about all those other things missing…And it wasn’t until I saw the chemo doctor and he says oh you’ve had this and you’ve had that and I said oh no, that’s not me. And he said hold on, I’ll check and it is you he says.

Once she had healed from her surgery Shirley started on chemotherapy.

I thought oh chemo oh God, I’m gonna lose my hair, I’m gonna be sick, I’m gonna be skinny, I’m gonna be all these things, but they said times have changed now. There are some chemos you’re gonna lose your hair but not them all.

I did worry about how I was going to do housework and the dog

At the time of the interview Shirley had eight weeks remaining of chemotherapy. For a total of six months she would spend three to six hours every two weeks in the oncology day centre, and be sent home with a bottle and a pump with a visit from the district nurse three days later. She tolerated her chemotherapy well.

I can’t say I’ve ever felt bad with it. It can be tiny little things they warned me about, like diarrhoea mainly, but they give you tablets for that and give you tablets for sickness but I’ve never been sick with it.

While she didn’t complain about it, it was evident that the issues with diarrhoea were impacting Shirley’s quality of life, preventing her from going on long walks with her dog that she had previously enjoyed

My exercise I’ve left off the map a little bit. I’m always needing to go to the toilet if we go through parks so I stay at home.

I take the diarrhoea one quite often, maybe twice a day…Oh, you know when you get that funny feeling in the bottom of your tummy and you think uh oh, so I take it before it gets too bad

I drink orange juice. Half orange juice and half water, I never drink it full now or I get diarrhoea

Shirley felt well equipped to manage her health thanks to the information provided by the cancer care team.

You get all that in the package, how to look after you, if you’re tired what to do, it’s marvellous. What to eat, what to drink. Because your drinking can be a bit funny, your mouth can go funny if you drink anything too cold or anything too hot…Healthy eating, how to make, because you lose a bit of your taste buds. And they tell you how to, they give you recipes and things…A nurse comes in and gives you, you know, your introduction day…And she goes through all that with you and what to do. Even washing your hair and everything.

Shirley has taken the information on board, monitoring her blood pressure and temperature, performing appropriate mouth care and continuing to self-pack her dosette box each week to make sure she remembers her medications. She was happily maintaining her new status quo, and didn’t see a need for any further assistance.

I don’t really have to worry too much about [the medicines], because it’s all done through your chemo you know, your medication… just trust that it’s the right thing.

At the time of the interview, Shirley felt confident with managing her cancer care and well supported by the broader cancer team.

You know, the first couple of weeks you’re just a wee bit nervous when you’re going into hospital, but once that’s over you’re fine. You’re quite confident on your own. And anybody you’re sitting with having chemo, there’s heaps of volunteers.

Shirley was ready to complete her chemotherapy and begin on the next maintenance phase of her treatment.

I got a cat scan in the third month there and everything was looking good, but with my lymph nodes I think they have to put me on a maintenance plan he said, but we’ll work that out later. Just to keep an eye, I think that’s a good thing, because they’re going to keep looking for it and I feel quite confident