This video was extracted from the ‘Patient Story: My Haematology Journey‘ video.

So big big warm Welcome to Fiona and Margaret.

I know thank you both so much, because it’s Nerve wracking for any of us being up on camera. Well, we are on camera, but, so you volunteered I suppose or I coerced you into doing this. But just tell us a bit about your, your story and I suppose just hints and tips for maybe other people going through a similar journey.

So Fiona can I start with you and just do you want to just tell me, tell us a wee bit about like, why did you suspect something was wrong and how did your diagnosis come about? June 22 i went to Australia for a month to family, and I come back from it and I felt really, really, unwell.

And I thought, I’m over 50. It’s jetlag. It’s just going to hang around for a while. I’ll just struggle on. But the symptoms started to pile on, severe back pain, excruciating tiredness. I felt exhausted all the time, pins and needles in my hands and cramp in my legs and ringing, constant ringing in my ears. So sitting in the office and I could just it was going on all the time. It was driving me nuts, phoned my GP. he left prescription for tinnitus and left another prescription to help with cramp in my leg. naproxen from a back pain. I went to the pharmacy and I says, no, I’m not having it. I’m not taking it. And I phoned the surgery back and I said, I need a blood test.

I know my own body. I’m not feeling well. I need you to look at me. It took a fortnight to get a blood test. 14th of September, 22 I went in that morning at half Eight, Had a blood test, went to work. I got a phone call at 1:00 saying get to A&E immediately. You need treatment immediately.

And I’m forwarding a letter to A&E and we’ll meet you there. And that’s where it came from. There. And bring us back to do you remember? Because I know you had a young daughter and everything at the time. Yeah. Thanks. Bring us Back to how did you tell the family or the. Well, I didn’t actually know what my diagnosis was. I was in Causeway Hospital in Coleraine for about a fortnight, not really knowing what was going on.

Everything was sort of, People were looking at me and studying me and walking away from me, and I was sitting there thinking, there’s something wrong with me, but nobody’s telling me, I got a MRI, went to Antrim, I was in C7, I was in a day and Aaron arrived that morning and he says, Fiona, I’m going to do a bone marrow biopsy today, but I know what it is you have.

I know what your readings. I see them all the time and you have myeloma. I hadn’t a clue about myeloma was I’d never heard that word in my life. And I looked at him and he says it’s not curable but very treatable. At that stage, I switched off completely. My daughter was in the room with me, my husband was in the room, and I looked at them and they were both sitting crying.

And I look and i thought what are they crying for, And then Kerrie sat with me and explained what was going on and what was happening and give me a lot of information, a lot of booklets. And of course, I just started to realize it. I have got cancer, it’s cancer, and they can’t fix it, it’s not a lump they can cut out, It is something that’s in my body that I’m going to have to live with.

It is frightening. isn’t it a lot to take in? I think when they say incurable and treatable as well, you kind of just get caught up on that. Yes. Well, and what about the treatment? How did you find treatment? I have to say C7 was amazing. They were so attentive to your needs. There was always somebody there to give you a hug on your bad days, because you did have bad days.

I cried on my own because I didn’t want to cry in front of my family. I didn’t want them to see I was upset or annoyed or wasn’t coping. It was a coping mechanism. And kerrie, you give me advice and I spoke. I actually took counseling. I had phone calls at that time through Charis and they were absolutely amazing.

So if anybody is starting their journey or coming through their journey, it’s good to talk and it’s good to talk to somebody that doesn’t know you, somebody that you can cry with. Because I think I spent my first two phone calls and I cried the whole way through the phone calls the poor fella. Didn’t know what I was talking about at one stage, but it was a great release and so beneficial.

Yeah. And what about the family? Did they take up counselling or anything? My daughter did. My daughter did. but she was 22 at the time. I was diagnosed. And her whole wee life she was going through her teaching and learning and studying and getting into placement, and she just thought, mommy is going to die. Yeah, that’s frightening. isn’t it.

And then you went on to have a transplant then I did. Yes. My anniversary is this week actually a full year since my transplant. and came here to celebrate. I came here to celebrate. Yes. And I’m sure there’s a lot people in the room who maybe are going to go through transplant or have some people like yourself have been through it.

But do you want to give a wee bit of advice or, or tell us a wee bit about how that experience was for you? The harvesting for me when they took into harvesting stem cells was harder for me than the actual transplant. I was very sick during the harvesting. but you get through it and you have to. I think it’s a positive mindset.

And in my head I was saying, I can do this, I can do this. That’s all. I carried the whole way through it. Went into the city hospital under Doctor Sarah Lawless, she was absolutely amazing. The whole team at the city hospital, the care. And I think it’s putting your trust in the people that surround you, the medical professionals that are advising you, listen and learn and take it in. And I followed every instruction to the letter and I thought, I am not doing one thing that is going to jeopardize any of this. I’ve worked very, very hard to do that. I’m still doing that now. But you still rely so much on the professionals and listen and you’re never stuck for advice and never be frightened to ask for it.

And I would say that while you’re in during your transplant, you’ll have symptoms. And theres no point in me standing here telling you, you won’t, they tell you what the symptoms are. You’ll get all of them. We all do. But it’s how you treat. it’s how you get over them. And I just had the idea in my head. Well, this is not taking me down.

I’m coming out of this. and, Margaret over to you. Do you want to bring us back to when you were diagnosed and the treatment and things like that. I’ll be honest, I don’t remember been told I cannot remember. I must say the memory has just gone. It remembers certain things. But, I know you did a great job. Not the same treatment probably as you went through yourself.

But then I had to fly back and forth to London, to King’s College, to get harvesting the cells. the main reason for that was Belfast was chockablock with patients coming in. So that’s four years past in March. So I went back and forward, making sure I was fit enough for it. harvesting the cells me and the daughter when back and forth for it which was great because. after you have done the hospital part, you went up the town. Brilliant! I love London. A bit of sightseeing, and then they did it. They took me over. I was meant to be getting, I think, two stem cell transplants back to back then, just purely because it would have been better for me. But, unfortunately, Covid struck midway through mine. So everywhere was in lockdown, even the husband was with me at that stage. Nobody’s allowed in, his hotel. He was then in shut down. But him and another doctor from King’s College, they were allowed to remain. But there was no food. There were on their own with that, I was all right because I was in hospital, so I wasn’t eating.

Anyway, I did find that the treatment painless, but very hard on the body but not everybody gets it hard like that. Some folk are able to sit up and have a bowl of cereal or something light. I just literally couldn’t I just it just was awful. But I got through because I knew it wasn’t forever. But look what you’re saying. You know, it’s not forever, which is great, there is a a light at the end of the tunnel.

I’m definitely seeing it now. Like, four years passed. I’m feeling great and everything about it now. And I think, as you say, the key thing for me, which I found easy, not everybody does is mentally I can cope with it myself. Yes, I do switch myself off from talking about it at home. I just don’t really bother.

The husband seems whenever we’re out he seems insistent, saying, oh, this is the wife, she’s got cancer. And I’m like, why is he doing that? I don’t, I don’t even do that. And I’m just llooking at him as much to say, why are you telling everybody, they don’t need to know that. Everybody and every family has got something wrong somewhere, whether it’s cancer, heart, whatever it is, and we all deal with it differently so therefore, Its you finding how you can deal with what you’re going through and definitely reach out to so many of us because we honestly, we learn from yous as much as you learn from us. we have a brilliant team and Aaron, I cannot thank that’s a that’s a sort of down to earth team they all are that they become friends and family to you, and it’s easier to talk to them because they’re there to help.

They know how to help. So yeah, just keep talking to you’s. Fiona, if you were to go back and talk to yourself before you started your treatment,, before you were diagnosed, what would be the 1 tip or 1 piece of advice you would give to yourself? I think don’t ever stop doing something, if you know what I mean.

If you want that holiday, Go and have that holiday. It doesn’t matter if you have to go into your overdraft to have it. Just enjoy life and just live every day. And that’s the philosophy I just have. And I, I’m just grasping that every day as it comes. I’m making the most out of every moment. And one thing I will say is if you do go into the city, anybody waiting to go in for a transplant, take bottled water, take snacks, take wee things that you have in your drawer.

I took tinned tomato soup. I had. Everything in they. Will help you if you’re not eating and not drinking. they will have stuff for you and ask if you’re sore, ask. if you have a headache, a painkiller, If you’ve nausea, ask for the drugs. That’s the one thing. Don’t sit back and suffer. You don’t have to. They’re there to help you. Margaret four years is it? thats fantastic,

So my recovery whenever I came back home, as obviously in London everybody’s or even in Belfast, everybody’s in their own individual rooms for the right reasons. But the whole part of the hospital I was in, as one patient with this was leaving another Covid patient was coming in. So it did start to fill up and it got to the stage that the nurses were saying, you need to eat, you need to eat.

I really struggled with eating because no matter what I ate it kept coming straight up, it just wasn’t staying, even to drink water or milk. It was hard. we had a fridge in the room so I kept water wipes that I always kept nice cool So that was something I relied on. And loads and loads of water. The nurses and that were great. They went out, and every time they were out on a break they come in with an ice pop for me. And I was able to have that ice pop. I think that’s what I lived on the whole time I was in London. but it did get to stage that the weight was dropping they had to start, sort of I was hooked up to everything, getting fluids put into me, because they wanted they needed me out before I caught Covid. So it then was a case of you need to get the weight up instead of dropping it, and I said, I can’t eat. So I said, what do you think you could keep down. And i said nothing, they ended up “we ll give you something” and I said spaghetti hoops.

You can swallow them without having to think about them. I hadnt had spaghetti hoops since I was a kid,, but I actually ate them. supposedly half them stayed down, half them didn’t but I got my weight stable. so it was the night before. Before I could book a boat or a flight home, depending on how well I was. so I had my nephew over in London, waiting to take me home. His car was totally sanitized for a full week. because that’s how long it was for me trying to get home, and then it got to the stage I said, listen go on home. its not happening here. I’m here like I can’t get going. So. And my husband he was stuck outside walking the streets like a wee homeless person, but anyway eating his fish supper at kerbs or whatever. so, eventually I was given the go ahead and I was able to the flights they, they were sitting on or waiting for my call so that they could have a space. Right. Go for it. so I had a girl my husband’s, cousin. She lives in London too, so she had her car sterilized.

Her kids weren’t allowed in it for a week everybody. she arrived with mask, gloves, everything. so basically they had to ring. And then I was wheeled out, in a wheelchair, which was awful, but thank goodness there wasn’t many folk about because it was Covid. I just sat there like, but they wheeled me out and got me into the car, got the flight.

Needless to say, with Covid, there wasn’t many on the flight. But you’re still always in your head. All these folk could have something, because we’re all heading home., we’re not all cancer patients or immunosuppressant. So that was a worry for me. So I basically sat in the fight the mask on the whole time and the head down.

And the wee sick tray in front of me, but after that, I remember just getting off, there was one lady and her kids were running about before we got on the plane and running about, and the husband went into over protection mode, and he just was like stop, don’t come here. She’s not allowed anybody near her. She can’t have kids right now. And I just sat there with my head down and thinking, oh, please, just don’t.

So anyway, the mother of the two kids rightly, he wasnt ignoraant it was just literally what he said, but I wish he hadn’t have. So then the mother, whenever i came out at the other side, my husband wheeled me to the side. So away from everybody, he got suitcases and the mother of the kids came up and she says, I’m so sorry I didn’t realize you were so ill. And I said don’t worry about. I said, that’s just the husband overreacting. I said don’t worry about it. I’m fine. So to come back home. And then slowly but surely, I walked about in my own garden. As much as I could with the husband beside me, and then he never sort of let me lie down much. He just kept saying to me, “Right. Let’s go a little bit further a wee bit further”. I did struggle with the strength, even now if I get down there, I would have to crawl to something to try to get up. And then sit with one knee up and think right is that the strong knee? or is that the strong knee? and it is awful because I feel like probably in my hundreds. But I am getting there and the strength has come back.

I can’t complain. He bought me a German Shepherd pup, which I did not want a pup or a German shepherd. So he bought me a German Shepherd. And to be honest with you, it has really, really helped me get the strength back. But unfortunately for that, I end up with another pup and so now we’ve ended up with, well you probably saw them on Saturday,

So I ended up with two German shepherds. That’s like right? But to be honest with you when I’m at home on my own and there’s two dogs, we do go. We go walks, you know, good walks and I can stop and start. But they did help me. They were a therapy dog. He actually used that word to stay somewhere in Dublin.

The hotel didn’t allow dogs. Says my wife got therapy dogs and I didn’t know this at the time till we went down. Next thing the girl says, we don’t normally take dogs, but we’re glad to, You know, you’ve got therapy dogs, and I’m like what? So he’s actually using it all to his benefit? Well, I got there too, but anyway, so I apparently, I’ve got therapy dogs as well.

And here that’s brilliant so four years and one year, so suppose any… obviously you are living with, you know, myeloma in remission which is great, and any tips on how to adjust and get back to the new normal. But you’re still maintaining that quality of life. Apart from the dogs and the no. I think it’s just always still being a wee bit cautious about where you’re going and what you’re doing, but not stopping yourself from doing it.

I’m back out walking every day. I’m not quite up to my 30 miles a week yet, but I’m getting there. I’m doing as much as I can with my friends and family, I’m heading to Alicante next week and I’ve booked Australia for February for a month, so, i’m living life. What about you Margaret? My tips for anybody is, trust.

Trust the specialist, they are fantastic team. And I know they say they’re not here without us being here, but, like, we wouldn’t be here without them. And, I mean, that’s the more serious side. We wouldn’t be here with them. So, they honestly are the best. and they are all there to help you. And whether it’s day night, whatever, they’re only a phonecall.

I must admit, it took me a year before, and that was all told to me, and it took me a year or more before I felt comfortable enough to lift the phone. But that was on my part. Whereas I used to feel guilty, i cant bother them I cant ring them ask stupid questions. Nothing really wrong. But then eventually I did. After that year, I said, no, listen, it’s not often I ring I don’t think I’ve rang in a long time,

But, But anyway, I trust them and what they’re doing. I am one of the lucky ones. I can switch things off in my head and I can say, here you go. It’s my body. You’s do what’s right for it because I don’t know what to do. You are the experts, and they do, and they put you in contact with whoever you need to be.

Plus, do not worry alone. Do not worry alone. Don’t sit on things. There’s always the time they will help. There’s even us eejits whos coming through it. Same as yous are all going through it, talk to somebody. It’s not always easy to talk to family. It’s not. But everybody should have somebody they can talk to. And mentally its a big key factor and our specialist here.

So that’s that’s me. Yes. And I’ll thank you both so much. It’s just yeah.