Digital Diaries: Cancer Patient Stories with the Northern Trust | Cancer Patient Stories Live: Aisling's Story @ Colorectal Cancer Health & Wellbeing Event, Nov 2023

In this episode we hear from Aisling who spoke at a Colorectal Cancer Health & Wellbeing event in front of a live audience in November 2023. Kirsty Neill, her cancer nurse specialist asks Aisling questions about her journey with Colorectal cancer. 

What is Digital Diaries: Cancer Patient Stories with the Northern Trust ?

Amy Wilson, Macmillan Information & Support Manager hosts our cancer stories podcast, interviewing people who have had a cancer experience. The cancer stories podcast series aims to bring you local stories from local people in the Northern Trust, sharing anecdotes from diagnosis and treatment, to telling family and loved ones.
Provided by the Northern Health and Social Care Trust in Northern Ireland, generously supported by funding from NHS Charities Together (https://nhscharitiestogether.co.uk/).
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Cancer Stories Live - Aisling's Story
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Hello everyone, and welcome to the sixth episode of the Cancer Stories podcast with the Northern Trust. Local stories from local people. My name's Amy Wilson, and I'm the Macmillan Information and Support Manager here in the Northern Trust. And we're going to share a recording from a live event we had in November of 2023.

It was a colorectal cancer health and well being event in the Ross Park Hotel. And during the event, we hear from Aisling, who shares her journey with colorectal cancer. Her cancer nurse specialist, Kirsty Neal. Asked her questions about her experience, and we really wanted to share that with you today.

Thank you so much, everybody. So as you Aisling. We're just going to go through some questions. And I'm going to tell us a wee bit more about what she's been through. So thank you again, Aisling. Thank you for having me. So firstly, what did you experience? When did you suspect that something wasn't quite right?

Well at the time before I got diagnosed, I was actually living in London, so I was just living my best life and just thought everything was fine, but I did start to notice a bit of a change in my bowel habits, I just thought it was because I was eating and drinking differently and I was always really fit and healthy and obviously I was only 28 at the time so I never thought anything would have been wrong, so I didn't even have a doctor, nothing in London, just.

Didn't even think about it, so it was going on for three months to be honest before I even sort of thought, Oh, this isn't right. Obviously you do what you do, and you go on Google, and I had myself dead and buried. And then I was coming home for a week's holiday in the March of 2020, GP, and then went and obviously told him my symptoms, because it got worse.

I was like passing blood, and bloating, and all that, and just my bowel habits had completely changed. So then I was referred for a colonoscopy straight away. But two days later, then COVID happened. So everything was slightly delayed then. Absolutely. And tell me a bit more about your diagnosis. Were you told at your colonoscopy then that you So, yeah, so I went, as I say, in March, and then I went in the August.

So through the summer, I got worse. I was like really bloated, lost my appetite. Had a few phone calls back and forth with with my doctor, and then I had done the stool test a few times, blood tests and things, and then I just had to Keep ringing a wee bit, because I just did, I know, I knew then that something wasn't right.

So then I was red flagged for a colonoscopy in the August. And obviously I'm presuming anybody here has had a colonoscopy, you know, you can see it on the screen. And I seen the tumour there and then, so my then surgeon was called into the room. And I was told there and then that it looked like I had Well, it was a tumor, and obviously because it was COVID, it was by myself, my good friend, who's actually here, had to come, God love her, and pick me up.

It was a traumatic time. But yeah, so it was, everything was rushed in, so scans and stuff, literally, that was like a Thursday or Friday, it was on the Monday, for the MRI scan, so it was all very quick then after that. . And were you expecting to hear that it was a cancer whenever you had it? I think I thought I had Crohn's or colitis or something like that.

Again, just because of my age and everything. They're just like obviously everything the bloods and all were high. I don't really know the ins and outs of it, but I don't think anybody was really expecting it to be rectal cancer. So it was definitely a shock. And then in terms of treatment then what what did yours look like?

So I had 25 sessions of radiotherapy. Alongside the chemo, the kefcidamine, and then I had a full interior resection, so then I had to get a stoma as well. And then after that I'd have six months of chemotherapy because I had lymph nodes. And then I had my stoma reversed two years ago. My goodness, you've been through an awful lot, obviously.

And what do you think was the most difficult part of your treatment? Well, for me, when they told me I had to have the stoma back, I absolutely went insane. I was like, no. And then I ended up loving it. So I was actually really upset when I got it reversed. And we had our names and everything. But then obviously for me, it forced me into an early menopause.

And because I had to have the pelvic radiotherapy and all that, like everything was just. So I had to, obviously, come to terms with being infertile and don't have any kids or anything. So, that's something I'm still obviously having to deal with now. But for me, that was probably the worst out of everything because I didn't expect that.

I don't think it's anything that's really talked about. And again, because I'm obviously quite young, going through that, it's definitely something that isn't really something that you would expect. So that, for me, that was probably the worst. That's wild, definitely, Aisling. And what was your surgery recovery like?

It was long enough. I was in hospital for 10 days. And again, I think I underestimated everything. Two of my best friends are nurses and also didn't tell me until after. It was a very big surgery, so getting used to the stoma on top of not being able to really move very much, and I had obviously lost a lot of weight as well I had to go to Coleraine for it.

So I was. It was far away from home. And again, it was COVID. So no one was allowed to come near me. So it was a lot, but in hindsight, I think back, I'm like, thank God. Cause I was like that for like six days. Like I couldn't have spoke to anybody. So I mean, probably everybody in my life will say I recovered quite quickly because I didn't really stop the whole way through it.

But it was, it was a tougher, definitely than I ever anticipated that it was going to be. I just thought it would bounce back, but I didn't understand the. The scale of it until I, until I had it, I suppose as well because you have your age and you're so young and fit and healthy before all this, but they say that obviously helped.

Yeah. Yeah. whAt about telling your family then about your diagnosis? I think again, a poor Hayley was made to do it because on the day I was just like, what? She took me home and. I went to my mom's shop. I was like, I can't tell her that, but made her go in and do it. And then tell my little brother, he's only 14.

So that was quite hard. I was telling him and then I sort of just made my mom tell everybody else. I was like, you can just tell everybody else. And then I told all my friends probably again, because it was COVID, probably went in my advantage that way because you didn't see everybody as often. So it was just sort of like text, phone calls, but everybody was obviously in complete shock.

So yeah, that was probably something as well. Then when you do see people, I feel like everybody else was more upset than me. I had a brave face on at that stage, so I was more confident in everybody else. Like, I'll be okay, I'll be fine, I'll be grand. So I think I sort of maybe got out of that a wee bit easier.

It's harder for everybody else probably. And after your treatment then, how did you feel once you finished all your treatment? Oh, you have such a relief. It's like, you build up to this. You know, I think when you're going through it all, it's like, right, I need to get to this next point, need to get this done, need to get this done.

And then you finish and it's like, oh my god, did I just do all that? But I think that's when I struggled a wee bit more because I actually sat back and went. I've like completely just went through all that and I was obviously had to come home from London got me redundant in the middle of it all as well so I've done all these crazy things before it was Thursday.

And so I had to adapt a lot like to my whole life had completely changed so I think I then like I've only sort of settled into it to be like, oh god I'm like way behind now everywhere that I was and have to adapt to like a new normal as I know you talk about but it's still ongoing like I'm still. I got my two years in the care there last week though.

So that was good. But yeah, I'm still like working towards finding life after everything. Yeah, absolutely. And that's probably a really good way to describe it because it is, I mean, especially I think for you moving from London back over here as well, that's a challenge in itself for anybody. And what about going back to work then?

How's that been for you? So obviously because I got made redundant in the middle of it, I was. I wasn't in work. So when I was like thinking about going back to work, I was advised to go back part time. So I did and I've done that for about a year and a half and now I've just got a promotion. So I've just went back to full time work.

So I'm only in like three weeks in, so it's okay so far. But I'm also working, I'm a manager in retail, so it's mad at the pace of times. But it's a lot it's a lot to get used to to go back to like from doing nothing and then like slightly and now doing 40 hours, but we're getting there. You're doing great.

So you're absolutely great. And just sort of on a final question, if you could talk to yourself just before you started your treatment, what advice would you give to yourself? Probably slow down. I just went full steam ahead and just was like, I'm fine. I'm okay. I'm grand. Cause I wasn't that sick. Like luckily through my treatment, my radio and my chemo, like I wasn't that sick.

So I just had this like brave face on, keep going. I also do social media as well. So I think I had to like. Well, I didn't have to, but I was like, right, I need to, like, be honest and tell everybody how, like, how I am and what's going on and stuff. So slow down. It is quite lonely. I think no matter how many people are around you, and I have the best support system ever, it is, like, very lonely unless you are going through it yourself.

I don't think anybody can really relate. So it's okay if you feel like that because it's completely normal. And ask for help, like, if you need it. I'm only taking the counselling now. I was offered it at the start and I just thought I need to get through this before I can even think of it. I had one round of it on the phone and now I'm getting to go face to face.

So that as well, like talk about it, it just, you know, it definitely helps getting everything off your chest. So yeah, just take it one step at a time. Very good. Is there anything else that you would like to say? I think that's it. so much, Aisling. Thank you. Thank you.

Thank you so much to Aisling for sharing her story with us. And thank you to the folks listening. We'd be very interested to hear your feedback. We've embedded a short survey in the text around the podcast platform. So if you could give us any feedback or suggest any future podcast topics, we'd really appreciate that.

We hope you find this podcast helpful.

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