12 minute read
living with a gastrointestinal stromal tumour
hazel macleod was first diagnosed with gist twenty years ago. now she's taking it on again.
what it feels like: diagnosed with small intestine cancer in the middle of a pandemic
diagnosed during the covid-19 pandemic, dave beaton would have to drive more than two hours for treatment — from the remote community of mindemoya to the cancer care clinic in sudbury, ontario.
dave was awake and watching the video feed from an intestinal scope when it came across a mass in his small intestine.
supplied
small intestine cancer, or small bowel cancer, is a fairly rare form of cancer — a rather surprising statistic, considering the small intestine makes up about 90 per cent of the digestive tract. this cancer diagnosis makes up less than one per cent of all cancer diagnoses and three to five per cent of all digestive tract cancer diagnoses, according to yale medicine. approximately 60 per cent of diagnoses occur in men. risk factors for the condition include being over 45 years of age; a diet heavy in red meat, animal fat and refined carbohydrates; a history of crohn’s or celiac disease; and/or previously having undergone radiation therapy for cervical cancer. inherited disorders such as familial adenomatous polyposis, hereditary nonpolyposis colorectal cancer, peutz-jeghers syndrome, and cystic fibrosis also increase the risk of developing small bowel cancer.
dave beaton, a lawyer living in manitoulin island, sat down with healthing to talk about treatment for small intestine cancer while living in a remote community, his experiences with the cancer-care system during the pandemic and why it’s important to educate yourself on your diagnosis and ask questions.
this interview has been edited for length and clarity.
related stories
advertisement
what led to your diagnosis of small intestine cancer?
basically, in the late summer of 2021 into the early fall, i was throwing up occasionally. no other symptoms — just running to the bathroom to throw up, no pain or anything. of course, it was during covid, so i was always wondering [if] have covid. but i didn’t have any other covid symptoms. no fever, no aches, no chills, no anything. and after i threw up, i felt perfectly fine.
around the thanksgiving weekend, it kind of went into overdrive. it got steadily worse through october and november. in december of 2021, it was to the point where i would eat either breakfast or dinner and, within a couple of hours, i was throwing it all up again. it was at a point i was eating soup and omelettes because i couldn’t tolerate anything more than that.
i live on manitoulin island, so medical care is a little bit thin on the ground. if [you’re] used to toronto emergency rooms, we don’t really have anything like that here. in late december, just after christmas, one doctor [in the emergency room i visited] was so concerned that she sent me to sudbury the next day on an emergency basis to get a ct scan done. she was concerned i might have what’s called an ischemic bowel, which is where your gi tract is twisted.
advertisement
the next morning, i drove over to sudbury, which is about a two-hour drive away and had the ct scan done. a day later my doctor calls and said that everything looked normal. the only thing that was kind of odd was that it said there was food in your gi tract. i said no, that couldn’t be right because i was told to fast, so i had dinner the night before around 6:00 o’clock and then threw all that up in the middle of the night.
at the same time, i was also talking with the gi specialist i see in sudbury. in early january 2022, i described some of the symptoms i was having, and she said ok, you’re on a liquid diet. get a blender and protein drinks and berries and stuff and just blend it and drink it because it’s clear that solid food is giving you trouble. that alleviated a lot of the vomiting problems.
[the gi specialist] booked me in for a scope. you get to watch everything in real time because it’s on a tv that you can watch from the bed. so, i could watch this camera go down my throat through my stomach and then out the valve at the end of your stomach and into the duodenum, which is the first chamber of your small intestine. [that’s when they] found the mass, and there was only about a millimetre or two left that was open. so that explained why i was throwing up all the time, because my system was almost fully blocked. [pathology soon confirmed the mass was cancerous.]
advertisement
what goes through your head when you get that call, and your doctor says you have cancer?
i’ve been through surgery a couple of times. no big deal. when i saw this thing, what was going through my mind is they’re probably going to tell me that it’s cancerous. i don’t think that that’s a cyst, you know? i kind of figured that’s where it was going to go, so there was no sense in getting freaked out about it.
what were the next steps after you were diagnosed?
the monday night [after i got the news], the surgeon called me [and said he wanted to get me in for surgery asap]. so, the next morning i was on the phone to the local dog kennel, called my neighbour who said he could take me over to sudbury and look after the house when i was gone. i was in the hospital for three weeks.
looking back on it, what i should have done is, in the fall of 2021, i should have asked for a barium trace — where you drink a milkshake and then they x-ray your guts. because that would have lit up the blockage like crazy. i’m not criticizing the doctors or anything but, you know, a different approach might have found this thing a little bit early. but at the end of the end of the day, they got me into the hospital as soon as they figured out what was going on. this was in the middle of the covid-19 pandemic, and even though they were dealing with covid outbreaks on floors and stuff, i was in there faster than i think most people would appreciate.
advertisement
what was the surgery for?
small intestine cancers are a little bit rarer than colorectal cancer, but they’re not unknown and they can occur anywhere in the small intestine, from the duodenum to just before the large colon. the way the way the surgeon explained it to me, was we’ve got to take your entire duodenum out and then an extra couple of inches to make sure we get all the cancer cells. and then we have to take the good end of your small intestine and stretch it back up to your stomach and attach it. the problem is we’re taking one form of tissue and attaching it to another internal organ so, sometimes, the stitching doesn’t work. or it can fail.
all told about 13 to 14 inches of intestine came out of me.
was the treatment after your surgery?
i was on ringer’s lactate solution for nutrients for about a week after the surgery, and after about four or five days i was allowed to have weak tea and broth. after about 10 days to two weeks, i was allowed to have puréed foods, and i had to stay on puréed foods for [about three months].
i got out of hospital around the middle of february 2022, and i was back into sudbury to see one of the oncologists in march, maybe late february. the unfortunate reality for where my cancer was located was radiology was not an option; chemo was the only option. the radiology specialist said the cancer [was] so deep in my body the beam would scorch the skin and organs on the way through.
advertisement
i started chemo at the end of march. as i said earlier, where i live, health care is still on the ground. there is one cancer chair available over at the hospital in mindemoya. but that area of the hospital was under renovation, so all island cancer patients had to drive either to elliot lake or sudbury for treatments.
i was on a three-week cycle, so day one of the of the cycle was to go to sudbury, i’d get up in the morning i’d meet my friend alex, my dog walking buddy. he’s semi-retired. i’d meet him and his wife over by the village of mindemoya, he’d come in the truck with me, we’d head to sudbury and i’d jump out at the cancer centre. alex would take the truck, go do a little shopping, run errands, read a book, and i would text him when i was about five minutes from being finished and he’d be waiting outside. there was no way after those treatments i was driving 200 kilometres to get home. that was just not an option.
to get the drugs injected in me was about a three-and-a-half-hour process, and then they sent me home with a two-weeks’ worth of pills to take. [i would] start them that night when i got home — [take a] handful of pills with dinner that night, then a handful of pills with breakfast that the next morning. i would do that morning and night for two weeks until the pills were gone, and i’d have a week off and go back and do it all over again. that went from the end of march to early september.
advertisement
what were the side-effects of the chemotherapy?
between the chemo injections and the chemo pills they give you this great big, long list [of possible side-effects]. pretty much everything possible is on it. but maybe just because of the drug combination or whatever, i had very few side-effects. i didn’t really lose any hair, which is good because both my brothers are bald.
but what i found was about two or three days after the chemo, i was just laid out with no energy. just dragged myself out of bed, dragged myself around the house. it was a struggle to make just a bowl of soup and have a bowl of soup for lunch or dinner, and that lasted for maybe a day to 36 hours. then i [would start] bouncing back.
the further i got into chemo, the lower my energy levels would go. my boss and i would go out and play men’s night golf on tuesday nights, and by the end of those nine holes i was dragging my a** to get back in the cart and i just needed to go sit down somewhere. all through last spring and summer as the chemo treatments were going on, i could get out in my yard and do a little bit, but if i overdid it, i’d get nauseated and start throwing up — so i had to be very careful.
the other thing i would get is what they call brain fog. literally could not remember anything. if i talked to somebody and made an appointment, i had to write it down as they’re giving me the date and time and then immediately put it into my phone with a reminder, because if i tried it after the phone call, i couldn’t remember the date and time or i mixed them all up. and being able to read a book? forget it. after two or three pages i couldn’t even follow the story or recall what i had read. now, i’m a lot better with the cognitive function, but i’m still mixing up words occasionally or blanking on words.
advertisement
towards the end of chemo [i] got neuropathy in my hands and feet; they say it’s a common side-effect. the drugs really mess with the peripheral nerves in your body, so it’s this tingling feeling in your hands and your feet that is non-stop. through the latter half of august, september, october, early november, i [would] drop a fork or knife if i was eating or i [would] drop my toothbrush. and then, because your feet are numb, you can’t feel your balance points. look at little toddlers learning how to stand and walk; they’re rocking back and forth and side to side all the time because they’re their brain is training their body how to compensate. well, that’s what it’s like when your feet go numb, because your brain can’t feel your balance point. so, you get up and you stagger around in the morning when you first get up, or, if you’ve been sitting for a while and get up quickly and try moving, you kind of stagger around … you kind of learn how to how to accommodate it, but where i find it’s most difficult is in the shower, when you’re rinsing soap out of your hair and shut your eyes. without the visual cue my balance gets really wonky. so, the only way i can keep it together is put an elbow on the wall and have a have a solid point to lean against.
advertisement
my feet are getting better now, the hands are a lot better. they still tingle a little bit, but like 2 months ago, i couldn’t pick a dime up off the table. so, the motor skills are coming back. i’ve got some temperature sensation [back] in my feet, and i can feel my big toes, but not the rest of my toes.
you know, you just sort of grind through it. i had a fairly easy ride all things being equal, compared to what i think other people at the cancer center were going through. it’s not easy to do on your own. you basically have to really rely on a circle of friends and i’m lucky that i have that here. i’ve got good support in the community; i’ve got good support with my friends. there’s about four or five people that i could rely on, but generally my one buddy alex was great. he said, yeah, not a problem dave. i got the summer off.
where are you now in terms of treatment?
i finished chemo in early september. since then, i’ve been going for ct scans every two months, and they do the contrast dye because they’re trying to see what’s going on with any masses. so far everything has been clean. the earlier scans i had back in march, april last year show that there were some lesions on my liver. one was about the size of the loonie, the other was about the size of a toonie. both of those have disappeared entirely, which is great. and nothing else has shown up since.
advertisement
my next ct scan is in may and then my next one after that will be early august. so, if those are both clean and they don’t see anything weird or concerning that requires further investigation i’ll probably put together a back to work plan for sometime this fall. that’s my plan anyways. i mean, plans always change. you never know, right?
what do you want people to take away from your experience?
all i would say is, if you’re having any sort of weird symptoms, don’t be afraid to get in your doctor’s office and pound the table a little. or get to the local emergency and pound the table a little bit and say, hey, this is not right. i know how i should feel, and this is not right. sometimes you have to really push. you know, i get it. lawyers don’t like clients who get their law advice from google and doctors don’t like patients who get their medical advice from doctor google. but you know what? sometimes you have to dig in and say no, i’m sorry. i don’t think you’ve got it right yet and i want you to do more.
readers interested in learning more about small intestinal cancer can check out the canadian cancer society, colorectal cancer canada, and the canadian cancer survivor network.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
advertisement
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
