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what it feels like

living with a gastrointestinal stromal tumour

hazel macleod was first diagnosed with gist twenty years ago. now she's taking it on again.

by emma jones

published sep 21, 2022

last updated feb 22, 2023

12 minute read

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12 minute read

join the conversation

what does it it feels like to have gastrointestinal stromal tumour?

hazel mcleod first discovered she had cancer after she fainted in church.

hazel macleod wasn’t quite sure what was wrong when she fainted in the bathroom of her church one day after service. embarrassed, she just wanted to go home, but her family encouraged her to go to the hospital. a few days later she had the devastating diagnosis: gastrointestinal stromal tumour. there are rarely any symptoms of gastrointestinal stromal tumours (gist), a form of cancer that occurs in the interstitial cells of cajal, a type of nerve/muscle cell combo that exist in the stomach and small intestines. in later stages of the tumour growth, some patients may experience blood in their stool or vomit, fatigue and abdominal pain. gist is also rare, with less than one in 100,000 canadians diagnosed each year.

chatting with healthing about her experience beating gist once and now taking the cancer on again, macleod had this piece of advice to offer: “don’t keep your diamonds for special days,” she says. “every day is a special day.”

this interview has been edited for length and clarity.

what led to your gist diagnosis?

probably the most critical [thing that happened] was that i passed out. my daughter happened to [catch] me before i fell to the cement floor that i was standing on. that was when i was rushed to hospital and started investigating what the heck is going on.

it was a very, very long afternoon. i think i saw an internist first and they hooked me up to blood pressure monitors and all that kind of stuff. he asked me a question, and as soon as he said this to me i was like, why didn’t i figure this out? [he asked if i had] dark stools. i know that’s internal bleeding, but i never connected it.

he said it might be a bleeding ulcer, [so] they called the surgeon, [but] i got the sense that he didn’t think that’s what it was. so i stayed in hospital for a few days. i had [four] scopes — they actually had to give me some blood that afternoon because i was too low. i think it was after the scopes that they told me.

when they told you that you had a tumour, what went through your head?

i couldn’t grasp the information they were giving me. they were telling me this looks like cancer in your duodenal, and, i mean, i’ve never heard of the duodenal. [the duodenal is the top part of the small intestine, located right next to the stomach.] i didn’t know what that was. i tend to need to be able to know where to fit the information in, and since i didn’t know what that was, i had to ask several times. but mostly i was just stunned.

it’s interesting to me that my family doctor and the surgeon came in, spoke to me and told me this news, and i was on my own. i was alone — well, i was in a room with two people. there was a woman on the other side of the curtain, but she was a total stranger. so, i just really struggled with trying to wrap my head around what this was and what does this mean? i was in a place that i just didn’t know how to process, i didn’t have it sorted out. i mean, i could start to think about, you know, how am i going to tell people?

how did you tell your family?

after those doctors left, the chaplain came in because she’d see my name on the patient list and she was someone from my life that i knew. so that helped that initial tears and whatever. the next person i saw was my husband, who came in after work that day, and then i had told him that i had this tumour and they think that this is what it is, this is the kind of cancer it is. you know? and right now the goal is just to get my hemoglobin back to a safe level so that i can go home and there will be a referral for [another] doctor.

i tried to keep the news fairly close at hand. it took me a while before i told my siblings and the next layer of family. all of a sudden the news got out, not because i let it out but because someone thought they should spread the news, i guess.

what were the next steps after that?

waiting on a referral to a surgeon who was experienced in handling this kind of tumour. surgery was the next step. it took two months to get to that spot, i think because the referral maybe got lost in the cracks. six weeks or more had gone by and my family doctor was like so you’ve had your surgery? and i’m like … no.

he had his staff follow up with that and within days i was travelling to toronto [from where we lived, in a small community just outside of orillia, ont.] to see this surgeon. he actually was a transplant doctor. [for] the kind of surgery that they expected i would need, i needed somebody who had that kind of experience.

you continued to work while you were waiting to hear from the surgeon — how did you concentrate on work at all?

for me, it was i know this, i can do this. and that there is the unknown and i’m just struggling to cope with it. but this i can do. so i went to work and nobody at my work knew. obviously, i was in hospital for a couple of days, but i returned to work and just carried on as if everything was fine. and i think that was part of my coping mechanism.

but then you had to change gears very quickly, because all of a sudden you were seeing a doctor, being scheduled for surgery the next week.

yeah, i got a phone call at work saying you’ve got to get in here (to my local hospital) and you need to pick up your cd that’s got all your scans and test results on it and you need to take it with you

because in two days you’ve got an appointment at 8:30 in the morning in toronto.

was it stressful being told you’re going to have surgery right away?

when i think back at that first appointment with the surgeon … we walk in, we hand the cd to whoever, and he looks at that. and then he comes into the room and talks to my husband and i, we’re nodding our heads: yeah, we got it. but i think he was probably looking at us as i’m trying to tell you how serious this is and i don’t think it’s sinking in.

one of the statements he made was that the surgery that they were going to perform is a step below having a transplant. but i imagine the kind of surgeries that he does, he has a lot of those conversations — trying to help people to understand how critical things are.

the day of the surgery, what were you thinking?

our faith has played a huge part in it. so, for us, god’s the one in control, you’re the instrument. you’re going to be doing whatever but, at the end of the day, the control isn’t ultimately ours. i think one half of my head was kind of like, you just do the next thing.

i remember [my husband and i] were down at a hotel the night before, because we had to be at the hospital super early. and i remember we got in there, and they come and check you in and then we had to go for blood work and lab tests.

but after that, we walked out of the hospital and sat outside on a bench and had the conversation of what if i don’t make it? what if something happens?

and so the time of surgery arrives. and i walk into the operating room, climb up on the table, and then i’m out. i think i was just thinking what’s this going to be like when i wake up? i had asked a friend of my husband’s to come, and i was hoping he would get there sooner rather than later so my husband wasn’t spending those hours on his own, because they warned us it would be like an eight hour surgery or so. those were some of the things running through my head: concern for him. because if i didn’t make i was going to be fine — it was everyone else i was worried about.

and how was the recovery?

the first 24 hours there was a bit of a problem: my bladder wasn’t emptying. so, i didn’t even really have feet [because of fluid retention]. i just kind of had legs that had stumps on the bottom of them. they corrected it quite quickly.

the after surgery care, i was in what they call step down. so [there’s] the icu and then the next slot down is step down, which means there’s a couple of patients per nurse team. and the care was excellent and they get you up as quickly as you can.

the surgery didn’t have to be as extensive as they originally had thought. i was in hospital for ten or 11 days. but the care was very good, they get you up and get you moving.

[when i got home] my sister came and stayed with me. she’d make me a sandwich and i’m like, okay, that’ll do me for four meals. that would fill me up because when they did the surgery, they removed the bottom third or something of my stomach. i had a much smaller stomach and i needed to be careful how much i put in because that bottom of my stomach had been stitched together.

did you have to change your diet otherwise?

i found that i did. it’s been a lot of years, i pretty much can eat whatever i would have normally. but for quite some time i found that fatty foods — they removed my gallbladder, so i couldn’t break down certain things like fatty foods. i [couldn’t eat anything that] had high sugar content.

in the big picture, it just it sort of boiled down to more healthy eating.

are you still going through treatment now?

so that was back in 2007, when i passed out, when i had my surgery, my treatment began and i did two years of medications. then i had follow ups: scans, blood work — that eventually became a yearly thing for 10 years with no evidence of any disease. in 2017, i was discharged from care. that was the decision based on my situation and all of the information and all of the clear scans, et cetera. with that, [it was made] very clear to me that if anything happened i could certainly contact them and come back in and be seen.

in 2019, i [was in the emergency room] for something totally unrelated. i was booked for a ct scan, and that ct scan showed that i had something in my liver. that was the second shock. i mean, it had been 12 years. you just carry on. you think i’ve missed the bullet.

i emailed my gist oncologist, who immediately emailed me back about things they needed done. i needed to get an mri, i needed to get my ct scan to him and my mri scans again. the conclusion was that they weren’t sure if my gist was back or if i had liver cancer. so i had to do specialty blood tests and do a liver biopsy.

the results came back and said, yes, the gist had spread to my liver. and that’s when the appointments were set up to be put back on treatment.

how did it feel finding out the cancer had spread, after 12 years?

that story started in october, just a few days before thanksgiving. and by the time i hit near the end of november, i had enough time to process it. in those weeks, with the different steps, there were tears in our house but a real sense of feeling like we’ll just take this one step at a time. and feeling more — i don’t know if control is the right word — but we just felt more informed this time.

there were lots of days those weeks when i wasn’t that great. i did wonder, how will it go this time? what side effects would show up? i think the real concern i had was would the [medication i was on] handle it this time? or would i have to move on to other medications?

did you have surgery again?

no. the plan was we would start with the medication and see how that goes. it was explained to me by my oncologist that we just don’t immediately go in and remove it because we can see this one. it’s big enough, we can see this one. but if you go in and remove that, and then another year down the road there’s another one that’s grown big enough — will i have to keep going in? it’s not that [surgery’s] not on the table, it’s an option if we need it.

and so where are you in your treatment now?

because it spread to the liver, that means it’s metastatic, which means i’m stage four, which means that i will be on treatment for as long as my body can handle it or as long as there’s options that are working. [the medication] is not eliminating the disease, but it is keeping me stable and, in the medical world, and in hazel’s world, being stable is probably the best i’m going to get. and i’m taking it.

in this cancer, they’ve come a long way. i see what’s happening in the cancer world around me, you know, i read things or see the new stuff. i know a lot of people think why have we poured billions and billions of dollars into cancer research and we still haven’t found a cure? there may never be a cure for some cancers, but there’s amazing things in that research that they’ve learned.

and what do you like to do in life that brings you joy?

a huge joy bringer for me is my family. my kids, grandkids and extended family are the highlights of my life.

i love to garden. i’m at the point now, with my energy level, i’m coming to realize that it doesn’t have to be a big garden for it to bring me a lot of joy. you know, we own a home, we have a yard, but in the coming years when i need to move to something that has a whole lot less work, i think i will be just as happy to have some window boxes out on my balcony or on my windowsill. gardening really brings me a lot of joy.

readers looking for more information on gist sarcoma can check out the gist sarcoma life raft group and gist support international.

update 2022-09-26: the description of this article previously said hazel is living with stage 4 liver cancer – it has been corrected to communicate hazel is living with gist.

what it feels like is a regular series that explores the experience of being diagnosed, treated and living with a health challenge. have a story to tell? email info@healthing.ca.

emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on twitter @jonesyjourn

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living with a gastrointestinal stromal tumour