This transcript was extracted from the ‘Lymphoma – Patient Representative‘ video.

Now we’re moving on to our patient representative. thank you so much, Monica. Please do. I want to welcome you both. to Bronagh and to Monica on stage. to hear the patient talk.

Okay. Do you want to introduce yourself? Okay, my name is Monica O’Neill, and Bronagh has kindly asked me to talk about my cancer journey. I am 56 now, I think. Yeah, I was given this 57 for a long time there last year, but I have a son. He’s 31 and twin girls who are coming 28 now next week.

One of my daughters is here with her. We bundle of joy Killian, who’s five months, coming six months. So, my journey. Yeah. So first question. And so when did you suspect something wasn’t right? Okay, tell me about a little bit about that process leading up to when you first came in to see us. Well, my journey, sort of. My treatment finished a couple of years ago.

I found a swelling just here and thought it was an abscess. I went to the dentist, and I, ran to the dentist for about five months and had three courses of antibiotics, and it still wasn’t going away. And, I was really panicked because I’d had breast cancer 11 years previous, so that’s always in the back of my mind anyway, so then I went to the GP, who was a bit concerned about it.

Then I sort of ran then to A&E for a number of months as well, and my bloods were a bit dodgy, but nobody seemed to be doing nothing about it to the point where I began to lose weight. I began to be very sick, had diarrhea. the A&E department miss seated me as well, so I really then was putting it down to just having an infection, but the swelling still was getting bigger and I really wasn’t noticing it.

My daughters had noticed that one day we were out for lunch. So I sort of cracked up. I was a bit cheeky one day in A&E and said, right, listen, there’s something not right here in my body. I’m losing weight. I’ve maybe lost two and a half stone within less than a month. So in the back of my mind, having that cancer diagnosis previous, I was thinking this couldn’t be happening again.

So I eventually sort of was a bit rude, which I am not that type of person. I ended up then saying, look, just refer me on. So they referred me up to Dundonald to the I can’t say it, so maxo…, maxo, I have it wrote down here, that’s how bad my memory is maxillofacial crowd. Yeah.

This lovely doctor came and took one look at me and said, I’m not sure. So my heart, I knew something was wrong. So he took this tooth out… Apparently I had an abscess, which I didn’t have an abscess. He took a biopsy, and within a couple of weeks I was down with the haematology department. And I knew by that stage I was going to have a diagnosis.

And I googled, which I shouldn’t. So that’s how my journey started for me. And then whenever you were first diagnosed, can you talk a bit about that? Whenever you first met with the haematology? Yeah. Well, after being transferred down into the Macmillan unit, I think it was, or whatever, because there was no beds available. Yeah. I’d met doctor McCluskey, him and Johnny, as well.

Who became, my buddy, aye should I say. And yourselves as well. And, I was diagnosed very quickly with non-Hodgkinson, And that was a big shock. and it was just then the process started, you know. What did I have to do? but because I had been so sick and C-Diff had been missed, I was actually very not well.

So I wasn’t able to start any treatment. So the PET scans arrived, you know, started to do all the scans and just started this journey then of that. Really? Yeah. And how did you feel at that point? I was devastated. And I’ve my tissues here, because I had been there before with the breast cancer. I sort of was aware then of what the journey was going to be in chemo and then, but my mind was, I wonder what stage I was at, I wonder, possibly maybe I had too much information.

Really, so I was totally devastated and I felt cross, actually. Like, I know, I’ve already had cancer, like, well, it’s like what’s the craic here, cross with the man above, everybody. and cross with myself, funnily enough, because I thought, I’m going to have to tell my family, you know, that was the next thing you know.

And that’s all I thought about was my family. And this is where the tissues come in, because every time I talk about them, as our Tara knows, I’m an emotional wreck. So yeah, I was cross, very cross. and then the next one was how did you tell your family and your friends and. Yeah, that was, oh here we go.

That was a tough one, because when I had breast cancer, the girls were just in fifth year. So, you know, it had been. I had seen what they went through and my son went through who didnt come. Youse didn’t cope with it very well, which was understandable, but I really struggled. I had this guilt thing within myself that this was me.

What am I doing to my family? You know, I shouldn’t be doing this as a mother because, you know, my family, you want to protect them. You want them to be. Everything’s just rosy in the garden. And I really struggled. but I have an amazing family, and, there was lots of tears. Yeah, lots of worry.

Trying to explain to them what I’m been told. Possibly keeping a wee bit back from them as well. maybe not need to know basis for me, friends were amazing. My background. I’m a mental health counsellor, although I’m retired now. So maybe I had that good support from a few of my friends are counselors and things, but I think when it comes to your own doorstep, it’s a different scenario altogether.

So, we got through it really well. Amazing support. Yeah. and then whenever you were. So your treatment started when you were an inpatient. Yeah. whenever you then receive treatment as an outpatient. What was that? What did that day look like for you? Yeah, again I thought, you know. Okay, look, I know what’s going to happen here, and I know how things are going to be, but it wasn’t really that way.

Laurel House staff, yourselves. Amazing. Doctor McCluskey team. Amazing. but petrified, you know, again, because I think it’s that unknown, you know, you don’t know what’s ahead of you. You don’t know, you know, when you go in, I remember they were talking about the numbers, Dr Niblock, talked about the numbers and everything as well. Going to sing now, is that on? Can you hear me?

Oh, gosh. Right. really it I remember they were talking about the numbers and they were high numbers and I was thinking, oh my God, I am going to die here. This is my time. But then they said, you know, those are quite good numbers. And I remember doctor McCluskey saying, you know, it’s not a bad cancer to have it’s a stage one twoish type one.

And I was thinking, how can a cancer be a good cancer if that makes sense. But the statistics and the figures looked pretty okay. So that really that helped me along so much that day to think, right. Well, he’s happy enough with everything, so I’m going to have to have be happy enough with it as well. Yeah. And then whenever you were in the unit so you were in the waiting room.

Yeah. And then you went to see the doctor and then you waited again. Did you sort of fill your time with reading and or did you take yourself out of the unit or I, I actually just stayed in the unit. Yeah I was okay with that. And the TV was on or I would have taken a book with me or something.

But for me, it was always to keep my mind away from what I was going to get, as I call it, the jungle juice. You know, maybe in an hour’s time or a couple of time. So. Yeah. Or maybe just sending messages, you know, people sent me messages, support, thinking about you, texting family and friends. but really, it was for me.

It was to keep my mind clear. Yeah. I’m. Try not to get into that overthinking stage where. What if this happens? So for me, it was really just that emotional side and the physical side as well, just to keep myself right. and did you need much support throughout. So, the likes of the CNS’s and tell us about we about how that was support sort of started. Unfortunately, I’m really independent don’t like annoying people person you know I always have been but I realized pretty quickly that I did need support, support from everybody.

Support from yourselves. You know, if I was worrying about something, I really was quite sick quite often with the chemo, so, there was always somebody there to speak to. There was, you know, I just left. Would have left a message with somebody or spoke with somebody that, was giving me the chemo that day. Say, look, I feel this way or I feel that way.

So there’s always I’ll always be indebted to yourself and Laurel House. the consultants, for the service was just amazing for me. Yeah. And did you receive any referrals from the Cancer Focus or Macmillan or any of it? Yeah, I did I was down with, the people here in Cookstown as well. yeah Charis. Who are truly amazing.

And if anybody hasn’t been in contact with them, I really would say do it for me. Now. I lived in Ballycastle, so it was a wee bit of a journey, for me, but it was really amazing. And also counselling. I did receive counselling also, through the GP and the services provided here, and probably still will continue on with that counselling because I feel I really need, you know, there are days are very dark and times are quite emotional.

So I always know it’s there, which is amazing. from that point of view. Yeah, yeah. And then whenever your treatment day ended, how did you feel sort of on that last day. And then how did you transition back to normality I suppose. Yeah. ringing the bell was amazing. but so emotionally charged. And I was a physical wreck.

I have to say. And I couldn’t have thanked everyone enough for the treatment. And, you know, everyone provided. But at the same time, I was petrified because in my mind, I knew, okay, I’m getting the chemo, I’ve had my Pet scans, I’ve had all these scans and bloods and things were doing good, and the chemo was doing the job that it’s supposed to be doing.

And in my mind then I was thinking, after this, I’m not getting chemo. It’s a psychological thinking. And, you know, is this going to come back quickly or is it not going to come back? So I got myself into a bit of a state, to be honest, and I needed really a lot of counselling, from that, that emotional side.

And I was scared. I really was scared and still am scared, you know, it’s still it’s always going to be there, but it’s learning now how to live with it. Yeah. I’m retired now, from, being a counsellor. I still keep my hand in with certain things, you know, but, I miss that, too.

But, I my daughter, one of my daughters, Niamh, actually through my treatment, actually found out she was pregnant. And, that really spurred me on and helped me. So now I’m actually a granny and something that I never thought with having a cancer diagnosis I would have ever seen. So this is where I do get emotional. so I have no two wee granddaughters, two and one, and Cillian is coming six months and that happened just sort of.

You know, after that my journey and it was like a godsend for me, to be quite honest, because, I think if I, if they hadn’t arrived, I’m not sure what situation mentally I would have been in. because of this. It wasn’t the first cancer was the second cancer. So yeah. And then I suppose at the end.

So you would have had your holistic needs towards to start and then we would have offered you one at the end. And you did avail of it. I did, yeah. And did you find it beneficial. Yeah. For the after treatment. So I suppose people finish treatment and they think right. And you do, you sort of things can sometimes fall apart a bit.

Yeah, because you’re out of control of that treatment. So did you find that end of treatment holisitc needs assessment, yeah. It was amazing because as I said, you know, I was a quivering wreck, really. And I had lots of concerns. And that really helped me progress, you know, each and every day. I still do have, you know, hard days.

And I think about it, but that really gave me a lot of support to continue on and to move on forward, you know, from the cancer diagnosis, because I remember somebody met me one day and said, look, your cancer’s gone. It’s away. And I was thinking, yeah, you don’t understand that affect that it comes with it. You know, the actual emotional really.

You know, and it would be nice for some people, you know, sometimes to be really tuned into those after effects. It’s just, okay, you have chemo, you know, that’s it done. You know, it’s there’s a lot comes after it actually as well. Yeah. I think that’s why we do try and have that end of treatment one because you can underestimate that or you do need it.

Yeah. And then how are you feeling now. And then what’s your new normal? well, I’m nervous because I’m sitting up here and from everybody, I. Yeah. Life’s good. It’s, you know, for anybody. My first cancer diagnosis it definitely changed my way of thinking with a lot of things. And let me tell you, a second diagnosis. It’s not really, related.

I had Non-Hodgkins and it wasn’t really connected. Whatever, my life has definitely changed. My outlook on life certainly has changed. You know, I don’t let tiny things annoy me anymore or worry about things. I have three great grandchildren now, who I just adore. And as I said, you know, they are a godsend for me, and they’ve definitely helped me along.

I worry, you know, I still worry. I still think about if I don’t feel well, think. And then, gosh, has someone come back or is this another trigger. you know, because recently, you know, I had a few night sweats and a wee bit of itch again, and I was thinking, oh, my goodness me, you know, but thank goodness.

No, it wasn’t anything really. But then again, that’s the mind overthinking. And for me, but yeah, I think a cancer diagnosis certainly makes you think and look at things differently. And for me, I know we’re all different, but for me, certainly I’ve changed a lot of things in my life now for the better. Yeah, definitely.

And you’ve actually been discharged from us now, yeah, which is great. Yeah. I’m sure you’re delighted. Yeah, but it’s amazing work you do because, girls, like, I can tell you, Laurel House, I’m indebted to you forever. I, I really am you. Do you support. You’re always there. And, really, from the bottom of my heart, I really, honestly can’t thank you enough, for being there with me and my journey and still continuing to be there as well, which is amazing.

Yeah. Thank you. And then the last wee question. So if you could talk to yourself before your treatment started, what advice would you give yourself? Certainly don’t Google. Definitely I did straight away as soon as I had an inkling that something was there. you know, try not to worry. Definitely. It’s very hard when you have had, I think when some people hear the cancer, the big C-word, they’re saying.

And for people that have talked to me possibly have said, you know, they link it to death as they like, you know, they don’t think you can recover from it. You know, you can do it really well. You can live on for years and everything. So, I always think, you know, change your thought pattern from it as well.

And listen, enjoy your life and continue and do the things that you put off from day to day. Absolutely. Don’t put them off from day to day. You know, if you decide to go on holiday, decide to do something, do it, really, really do it and enjoy life. That’s the most important thing for me at the minute. I enjoy it and, you will always know.

Now that even if you do have a cancer diagnosis, there is amazing help and treatment their now compared to years ago. So, that’s my look on life now. Definitely. Yeah. Thank you very much. Thank you.

Yes. Thank you so, so much again to Monica. So many people go through a cancer journey without meeting anyone else or speaking to anyone else who has gone through something similar. Never mind somebody locally. So it can help people feel more connected, less isolated. And it is certainly not an easy thing to do to get up on stage and share such a personal story.

So thank you so much again, Monica.

So now, we’re actually going to merge the rooms. So the way we did it today was, people who have a myeloma diagnosis are in a separate room. And so now we’re going to invite them into the room. And, so you were lucky. You’ve got to stay where you’re seated, where these guys have had to travel a distance to get to us.

So, we’re just talk amongst yourselves, introduce yourselves to the person beside you. have a wee chat while we wait for the rooms to merge here. So we are running a wee bit behind by ten minutes behind. Apologies for that. but just give us a wee time here just to get, everyone settled. Thank you.