This transcript was extracted from the ‘Breast Cancer – Patient Representative’ video.

Brilliant. And so now we’re actually moving on to hear from our patient representative Joanne. I will say that these are always the highlight of these events, that we do. It’s just lovely to hear from someone who’s been through something similar. And we always want to do a bit of an interview style go on ahead.

f you want to head up, an interview style, because always think it’s a bit cruel getting somebody up on this podium and just staring out everyone by themselves. So it’s always nice to have company up on stage. So I’ll hand you over. We only have one, Mic? So over to you guys. I feel much more comfortable.

Now I’ve a friend up here. Okay. So this is Joanne. We’re just going to have a wee chat here. Just about, Joanne’s past two years. She’s going to tell us a little bit about what’s been happening with her. So, Joanne, if you just, like, first of all and tell us a little bit about yourself and just something interesting maybe about yourself.

Hi. So my name is Joanne, and I live on the North coast. I’m married to Martin, who is with me and who has been my greatest supporter through all my treatment. We have two sons. Corin is 24 and getting married now on the 31st of July. And we have a second boy, Zachary, who is 22. We have, two wire haired sausage dogs who are an absolute nightmare and a wire haired pointer, but they would all say the greatest love of my life is Craig, who is 16 hands high and is a cob and I absolutely love him.

But in all seriousness, my biggest love of my life is I am a Christian and I have been since I was 17 and I go to Portstewart Baptist Church. So that’s a little bit about me. And I’m 54 years of age. Thanks Joanne, so I’m just going to ask Joanne, some questions about her journey. And as I say, what’s been happening over the last few years?

Thank you so much for doing this. We can all stand here. And, you know, as health care professionals, offer support and guidance and education about what’s going on. But I haven’t been through it you have. So, I think that’s the very important part of today. Probably what a lot of people will take away, will now be what you say in the next few minutes with each other.

So if you just want to tell us a little bit about when did you first notice something’s wrong or what what led you to go and get things checked out? Well, I never felt better in my life than when I was diagnosed. I had had a mammogram six months previously and had it six months after my 50th birthday.

I’m a hairdresser by trade, but I was a baker in a coffee shop four mornings a week, so I was doing that four a mornings a week, and I was hairdressing two. I was running the house. I was riding a horse, walking dogs and and all those things, and I never felt better. I had we had been celebrating Martyn’s, sister’s 50th birthday over the weekend, and, on the Monday morning was the 11th of July.

That’s one of those things that you remembering exactly when you found what you did, and I woke. I felt my breast felt uncomfortable in the bed, but I have big boobs, so, that wasn’t really that uncommon. So I felt that, and I found a lump, quite substantial lump. I thought I was going to pass out be sick, and as you do, and, I phoned the doctor and I was down with her.

In an hour and a half later. So she was said to me, I’m not a betting woman, but I’m 99.9% sure that that is nothing. That’s just a cyst. So, I felt very relieved. I was seven weeks before I, went then, had my breast scanned and got confirmation of what I now know to be was breast cancer.

And do you mind telling us a little bit about when you got your diagnosis, sort of what those thoughts, first thoughts were, how the diagnosis went for you? The first, when I worked on the breast clinic, I know what patients said to me at the very start when they got their diagnosis. The first thing was, I don’t know how to tell my family.

I don’t know what to say to people. So. How. And when did you tell your family through that diagnosis? When I first went, and got the biopsy and all done, I went. in of course, doing what I do find anybody who knows me knows it’s exactly me. I was trying to tell the Consultant. So this is just a cyst.

And then when I went in and they did the biopsy and there was two consultants and the nurse in the room, I thought, wait, this, there’s something going on here. So I knew my own gut told me. But one of the first doctors I had spoke to, when I was diagnosed, said to me, oh, we’re looking at radiotherapy.

And a lumpectomy. So It also fell over a bank holiday weekend. So I actually went away thinking, do you know what? Praise God, this could have been so much worse. But when I went back two weeks later for my results, I was told no, I had Her2 positive hormone negative breast cancer. I was stage three, my tumor was 4.5cm and I would have to have chemotherapy.

So I was very much it was in the days Covid, I had a mask on. I was panicking behind it. I was saying to myself, help me, help me, I can’t do this. And I said to doctor, Whiteside, would you take my breast off so I don’t have to do chemotherapy? And he said, I can take your breast off, but you still have to do chemotherapy.

So Orla, who I don’t think is actually working in the unit now, was my wee nurse that day and she was amazing. The girls are fantastic. The team and Laurel house and every walk of this journey are just amazing. They are god given girls. They’re just brilliant. But she advised me to have my eyebrows tattooed now I said, I’m a hairdresser, but I’m not high maintenance.

I have a horse. I cut my own hair, I color my own hair, and I don’t do anything like that. So when she said to me, get your eyebrows tattooed, I thought, that’s unnecessary. But it was the biggest saving grace because when I hadn’t, the hair on my body and I have my eyebrows tattooed on, I didn’t suit a wig because my hair has always been like this.

And I just look ridiculous in the wig. So I wore pom pom hats and I was lucky. I have chemo over September through to January, so I wore a pom pom hat. I didn’t look any different than I ever did, but the eyebrows were a great way to start drawing on my face. Telling my family was extremely difficult.

Like I say, Corin had got engaged. My first thing is, am I going to be there for this wedding? He Had been going with Jessica since he was 14. The other biggest issue was, our son had had a car accident when he was 14. He had left school with a nervous breakdown, and he and I worked together in the coffee shop, and we had had an awful few years.

And I just thought, oh, my, how am I going to tell this to Zachary? Like, what am I? How am I going to tell Zachary that this? But I really do believe that these things sometimes are very difficult. Nobody wants to be where they’re at, but there’s learning and where we’re at now. And I Zachary really stepped up.

It was the making of him. He has went from strength to strength. So it is difficult. And it’s certainly not a word that was no cancer in my family of and anywhere. My parents are 75 years of age. They’re healthy. And well they were in France and I phoned them and they came home, but it’s difficult, but you’re stronger than you think, and it is completely doable.

I think that’s the thing. isnt it whenever you get a diagnosis. You know, there’s other things going on in your life that that’s not just that there’s so much else to think about and, and have to deal with, whether that be kids or elderly parents or a business or whatever it is. So there’s lots of things that come on board with that.

So you kind of mentioned there about getting chemo, and the bit about surgery. So when did you have your surgery, when did you have your chemo? What what was your treatment like? What was your journey, your pathway of your treatment? So I started I was diagnosed officially, I think it was 24th of August. I had MRI, as we all do, and then I started chemotherapy in September.

I was absolutely petrified. I am really allergic to lots and lots of medication, and I didn’t know how I was going to do this. But the team were amazing and I had six rounds of chemotherapy every three weeks, so I had a brave, strong dose of the stuff I had. The Red Devil as they all talked about and, I wasn’t I didn’t vomit once.

I spent a couple of days really, after feeling not too good, but my husband said that they knew I was coming back round when I had treatment on a Wednesday. By Friday evening or Saturday lunchtime, I was looking for a curry chip or a chip. pea and gravy at the chip shop. And I was very blessed. I didn’t have mouth ulcers.

I didn’t have a whole lot of symptoms. I was sore and stuff. But like I say, the horse, I believe God sent him when he knew it was coming for me because I was back riding the horse. On day eight of my treatment, I remember going in and saying, Dr. Mooney after my first chemo, going in for my second, and she said, me oh you look great?

And I said, I feel great. I said, it was like a switch went off on day eight. And I know that’s not the same for everybody. But she did say to me, oh, you’ll not continue doing that. And I thought, you watch me. And I rode Craig through all my treatment. There was days and made it have taken me, you know, ten days before I felt strong enough to do that.

But my thing would be to everyone. If you feel that you want to do something and you have a passion and something that really lights your fire, go and do it. Today is the day that you have. Nobody knows and I mean nobody knows what lies ahead. So go and really enjoy it. After my first treatment, my lump, I say, was 4.5cm.

It reduced to half of that. By my third, I could put my fingers in the holes about there. So I was very blessed. They did said to me my treatment was miraculous. I mean, I really reacted very well to chemo. So by the time I had my third chemo, my tumor was gone. So I thought, oh, maybe they’ll not make me do the next three.

And but of course I did. So I finished, chemotherapy on the 5th of January, and I had my lumpectomy on the 8th of February and again, absolutely nothing to it went. in in the morning the surgery was really good. I have been really very sick with anesthetics before. I’ve had polycystic ovary, and different gynae things, but they give you this amazing anaesthetic where you’re not sick at all.

And, they told me they give the good stuff to the breast cancer people is what they said? And, I was discharged at 2:00 on the day. I could hardly keep my eyes open. I had,that many drugs in me. And I woke the next morning and I never felt better. I really exercised my arm and did everything.

I’m a very. I’m a bit of a hundred mile an hour type person. I was back on the horse in eight days. I could have been back on him in, 2 or 3, but I thought I better not push it in case I pull the stitches out. And then in the April I had radiotherapy, so I had ten sessions of it.

I remember, consultants saying to me, this is the dessert after chemo. It really is. I’m not playing that down. It’s very difficult. Anybody going for it you’re nervous and everything else, but, it is really easy and doable. And I do think Mr. Campbell said to me, I really do believe the biggest thing we all have going for us is our head.

So if we can try and keep on top of it and say, you know what, I can do this. You absolutely can. Great thanks Joanne. That’s what I said earlier. Like years ago, it was just surgery, one form of treatment, and that was that. But you had treatment before and then surgery. Some people will have had that, others will have had surgery and then different forms of treatment.

And you stayed on targeted therapy for a year after that as well, right. Yeah. Yeah. So how was that, was that manageable for you. Did that bring any side effects? I had Herceptin, I think it lasted 18 months, but I had so many of them. Is that right. 18 cycles, 18 cycles. So, you have it along with your last three chemotherapy, i think, it’s an injection in your leg.

And I didn’t find it too bad. Its a bit stingy going in, but it didn’t really affect me too much. I did have bone pain, and I didn’t realize that was that, and the I did find that bone pain really quite difficult. But again, as I say, I woke in the morning, I was sore I stretched.

I went out and walked. There was times when I was out walking I found that, like I say, we live in the North coast part of the west strand, and I made it just a bit to the beach. And then maybe the next day I made it to the harbor. But now, I’m back doing everything.

And in fact, I’m we’re doing as a family the Macmillan hike from Ballycastle to Coleraine, now on the 31st. So that’s 26 mile and I have done no practice.

I think that’s it. That’s what I talk to patients in review about. I, you know, you won’t just wont go back to doing what you done before. It is about building up gradually, as you say, whether that be when you’re out in a walk or walking to the next lamppost and back, or the next corner and back its important, to build up gradually over a period of time.

And it is finding a new normal for you, that works at the minute and building on that. So when your treatment ended, how did that feel? I spoke about, you know, stopping the endocrine treatment for people that are on that, yours. Finished then with your, your year long of the Herceptin. How did you feel when treatment ended did that play in your mind?

I went from never feeling unwell to and you will all understand this, having a letter coming through the door constantly. You know, a nurse coming to do your blood and just dreading seeing yet another appointment coming in. And I was really surprised when my husband said to me, you know, there’s a thing called, chemo hangover whenever you’re finishing it. And I thought, oh, I’ll absolutely not have that. I can’t wait to get finished this. And I cried for about ten days. I cried and cried and cried. And I think it was just the relief to have it done. When I finished the injections, I did feel a bit nervous and a bit scared about, you know, I’m on my own, but you’re never on your own because the girls are there.

You do get a mammogram and I’m now, a year and a half since I finished my injections. And I’m very relieved not to be still having treatment. And I know I’m fortunate my cancer was non hormone, so I’m not taking tamoxifen or something that some of the rest of you are probably taking. But I did feel nervous about finishing.

But as I say, the girls are there at the end of the phone. And in fact, I remember when I was having, I took Covid and I was still, I think it was just around the time I was finishing and I phoned the doctor and he sort of said to me, if you’re chest is still not good in 2 weeks come back up or give me a ring and I sort of thought do you know what, I’m just going to phone Laurel House and I did, and I went up and they did every test, and they said to me that my blood showed that I was reacting well to the antibiotic, that I had been left without being seen, and that they were only at the end of the phone and they were just brilliant. So if you do need anything, I would advise you to phone, because they are really a brilliant team. It is hard sometimes stopping treatment. As I say, I do the review clinics and my first review appointment for patients would be about 3 to 4 months after treatment is finished.

And I’m sure many of you have sat in the room with me and I’ve said to you, but it is at that point that people struggle the most sometimes when treatment has stopped. The adrenaline keeps you going from the day and hour you get your diagnosis. You just want your surgery. You just want it out. You just want your results, what treatment do I need, and then it’s bam, bam, bam, bam, bam through your treatments. And then after treatment stops everything settles down for a while. And then it is only at that point that your brain actually catches up with your body and you realize what you have actually been through and everything does get a little bit worse after treatment finishes before it all starts to improve.

It’s a very real thing and people sometimes feel guilty that, you know, I felt ok during treatment or a managed treatment or I felt awful through treatment, now treatment’ finished, I should be feeling so much better and I’m not. It is a very difficult time in that transitioning period but please do be assured as Joanne said, we are here, the best care nurses are there and do phone us if you have problems with that.

So how are you feeling now Joanne, what is your new normal? Are you back to work? How has that been? How are you feeling? I feel great. I feel very well. I am full of energy. I just, I think I have changed. I said to my husband earlier that when I used to do things like go to the forest on the horse, I needed to sleep in the afternoon.

That’s when I was working full time. I don’t do that anymore and I and I know that mightn’t be possible for everybody, but I kind of prioritise my life. I work two mornings a week, which I really enjoy. It means that I am still me, Joanne, the hairdresser, but the rest of the time I’m out enjoying, you know, being outside in the fresh air, my horse and all those things and I really do feel that being out and about is really good for your mental health and I really feel that it has it benefits me. So my new priority is I work two mornings a week, and the rest of my time is making the most of my life.

And just in closing I suppose, if you could talk to yourself now prior to all of this, what what sort of advice would you give yourself or what advice can you give anyone here in the room today? You know, still going through treatment? Finishing treatment? What what would you say to yourself now that you’ve been through this?

To me, this is probably the most important question, because it’s the type of thing that I wish somebody had said to me. I would say, surround yourself, I’ve had to put the glasses on as you can see, this is the only notes I have, surround yourself with positive people and be selfish. Stay away from negative Nancys or negative Normans.

Nobody needs those. If you want to do something, do it. Happiness is underrated. Don’t let someone else’s journey, make you feel afraid. Pamela Ballentine had exactly the same treatment as I did. I didn’t have any of the symptoms that she had. Stay in your own lane. A friend said to me, she’s married to a Dutch fella, and they lived in Amsterdam, that the biggest cancer hospital in the world is in Amsterdam and they said that you are unique. There is not two people in this room with the same gene pool, nor the same cancer because how you react to the treatment will be different from somebody else. So I really took courage from that, that I’m unique. I’m the way I’m supposed to be and I just battled on.

The other thing that I didn’t do is I didn’t read anything about my cancer and I certainly didn’t Google. My poor husband brought the books home and he read everything and if I felt something, I asked him and he told me if it was normal or not normal. Tell yourself you can and you will.

18 months of treatment is what my treatment was and I would say I never lived more than I did through my treatment. I think it for me, it was, you know, it made me prioritise and realise what is so important, that nobody’s guaranteed any day. And in fact, I’ll not go into it but a friend of mine was killed in a car accident, whenever I had got the all clear, and her and I had sat on the sofa and cried. And six months previously, nobody would have said if one of the two us had of been here, it would have been me. And that’s not the case. So nobody is guaranteed a day in any way. Don’t allow yourself to look too far ahead. Just really focus on today, but plan things that you know will bring you joy or a holiday or and if you want to do something, do it.

Ride your horse, surf, paint, cook or do whatever it is that makes you happy and try to be a glass full rather than half empty. And another couple of things I wrote down was it’s ok to grieve and feel overwhelmed, but don’t allow yourself to wallow in self-pity and stay there. It doesn’t do anybody any favours. And I really do believe that I’m exactly where I’m supposed to be, and that is here. This is so far out of my comfort zone that it’s unbelievable. But I do believe that if I can say something to encourage you, because I have done quite a bit of this journey, that that’s why I’m here. And as I said earlier, I am a Christian. So I want to just say that, that doesn’t make, my journey not leave me that I was frightened of dying or anything else it just brought me closer to God. And there’s a lovely hymn that I like and it’s called Ancient of Days by City of Light, and I used to recite this to myself “through the dead of night overwhelms my soul. He is here with me and I’m not alone. Oh His love is sure and He knows my name, for my God is the Ancient of Days”.

I really do believe that God is in charge of all our lives. Joanne, thank you so much. I think what you’ve said is so encouraging to everybody here today, no matter where they’re at. One of, somebody was saying to me the other day, you know, going through chemo it is a very lonely experience for some people. It can be very daunting.

It is so good to see you looking so well, feeling so well and and speaking here today. So thank you so much. I would say as well what Joanne said, as we’ve said through a lot of the talks, it is very individualised for everybody. Everyone will have different symptoms, different side effects, react to things differently right from the day you got your diagnosis.

Everybody reacts differently and that’s right through to the end of treatment. So there’s something for everybody in getting through this. But it’s so good to see you today and doing this and we really do appreciate, on behalf of everyone here thank you so much. You’re welcome.

Yes. What an incredible, what an incredible story of strength and hope and some amazing advice and wisdom as well. And so many people go through a cancer journey without meeting or hearing stories from anyone else who’ve been through something similar. It can help people feel more connected and less alone in their experience. So Joanne, thank you. Thank you so much.

Really, really appreciate that. Another round of applause for Joanne.

So before we go on to, a break, you’ll be glad to know to the to those scones and to that fruit that I mentioned earlier on, I just wanted to try something a wee bit new. We do have charity tables around and I just wanted to touch on each one very, very quickly, just so that you can think to yourself

“Oh, actually, I would like to know a bit more about that” and to go round, because we really do encourage you to speak to the different charities around the tables. So over here we have Look Good Feel Better, Michelle from can you give us a wee wave. Michelle hosts different pamper sessions in Antrim, once a month, every month.

And you can see the lovely free products that you get from there. It’s all about looking after your skin, getting back to feeling good and meeting other people who are going through something similar. So if you want to sign up to something like that, please do head over to Michelle. Then we have Cancer Lifeline over here so if anybody’s in the Newtownabbey area, or have family in the Newtownabbey area, they do different bits of counselling, complementary therapy, support groups. Then we have Rosie’s Trust, so if anyone has any pets that they’re really, you know, maybe struggling with walking, maybe needing support to go to the vet, things like that they support with any of your pet needs.

Then we have our lovely dietitians at the back as well. They’re going to be doing a talk a little bit later. So if you’re wanting to look about healthy eating and diet and I know that, some of the nurses earlier on touched on, some of the sort of, oh, gosh, I can’t think of the word. It’s gone.

But anyway, over there, for any information you’ll hear from Leah. Then we have Cancer Focus, so Cancer Focus actually has a bra fitting service, they also have counselling, they have family support. There are, they have counselling. So Cancer Focus. Then we have Breast Cancer Now and Breast Cancer Now I know that a few of the nurses touched on their support as well but they have Moving Forward support groups, they have a support forum as well. They have nurses online and they have loads and loads of fantastic information. Then we have MindWise partnered with Macmillan support over here. Linda, hello. We, and they provide psychological support. So there’s different, online support that you can get, there’s face to face support and support groups as well over there.

Then we have the benefits service. So Macmillan Benefits Service. Hello. So if anyone’s looking any support with benefits advice then they are the people to go to. And then we have Charis Cancer Care over there as well. They do counselling and there’s no waiting list for the counselling over there. There’s complementary therapy. There’s different groups as well over there, which is fantastic.

And finally, I’m just going to plug the Macmillan Information and Support Service. So we are actually based in the hospital. And we try and keep on top of all this different support so that you guys don’t have to because it’s overwhelming. There’s just so much out there and we try and link you to the support that’s right for you.

So we’re actually over there and we’ve recently, got in touch with a new charity called Little Lifts. So if anyone is less than six months past your treatment, they are giving out some, hand-picked gift boxes for anyone who has been through treatment. So please, it is, it does depend on certain criteria. So please do go over there.

It’s a lovely free freebies as well. So we apply for that for you. So we will need you to fill out a wee form. I think that’s everything from did I miss anybody oh please, I hope I didn’t miss anybody. Oh, yes. Fatigue management workshops. We run fatigue management workshops. This will be touched on a wee bit later.

But if anybody is experiencing fatigue we do run them in Ballymena through the Information and Support service. So please do talk to us. We are just there at the flower display if anybody wants to talk to us. So that’s us. Tea, coffee, fruit, 40 minute break. Please come back at 12 o’clock and I encourage you, please ask questions, share your stories with each other.

Connect with other others who understand what you’ve been through. And please come back at 12, all right everybody, thank you.

Oh a round of applause that’s nice.

Well done guys. Well done.