Love, loss, and support: Ian Brandon discusses Cheryl’s decade-long battle with blood cancer

[00:02:37] Maryanne: Good morning, it’s Maryanne Skarparis speaking and together here with me today for the Talking Blood Cancer podcast is Ian Brandon. Thank you for joining me Ian, how are you? 

[00:02:49] Ian: Hi, yeah, very good, thank you, and, good to talk to you again. 

[00:02:52] Maryanne: Lovely. I just want to share with the listeners that I’ve known Ian over a number of years and I’d like to invite Ian to share his story about his experiences with his beautiful wife Cheryl and blood cancer. 

[00:03:07] Ian: Okay, well, started in 2012. Cheryl had been unwell for quite a period, but she refused to go and see anybody, unfortunately. That was her way and she wasn’t markedly unwell, but she was not right. I and a number of her friends tried to get her to the, uh, GP, who we had a very good relationship with. But she was quite stubborn in that respect and refused to go and see anybody. I knew something was wrong, but, I’m pretty sure she knew something was wrong as well, but didn’t want to own up to it or admit it. So, unfortunately, one morning she collapsed at home here in, Kawungan in Hervey Bay. Had no choice but to ring the ambos, rung triple zero, got the ambos down and, she was straight off to the emergency department at Hervey Bay Hospital, our local hospital within 24 hours she’d been admitted to St. Stephen’s Hospital here in Hervey Bay. Within 24 hours, they suspected that she had non-Hodgkin’s lymphoma, did some tests and confirmed that and realised that she needed to go down to Brisbane. So, she was moved quite rapidly down to the Wesley Hospital in Brisbane. She was taken down by the Flying Doctor Service. 

[00:04:29] Maryanne: Mm. 

[00:04:29] Ian: From Hervey Bay here to, to Brisbane. One of many flights, unfortunately, backwards and forwards from Brisbane with the RFDS. I saw her off at Hervey Bay Airport here. Saw her put into the aircraft and said, “Oh, I’ll catch up as soon as I can.” So, as all of these situations, it happens very quickly. So I rushed home, packed a bag very quickly, packed up the house, and drove to Brisbane from Hervey Bay. 

[00:04:59] Maryanne: That would’ve been a hair-raising trip for you, Ian? 

[00:05:02] Ian: Very much so, yes, yeah, yeah, yeah. Had absolutely no idea where it was all leading. So, got down to Brisbane and found the Wesley Hospital, because I had no idea where it was, and found somewhere to park, and eventually found the right ward, and walked into the ward. I think that was 4B at the time, and Cheryl was in a double room when I got there, and she said, “Where the hell have you been?” “Well, you flew down, and I had to do a few jobs before I got here in a four-hour drive away.” So anyway, that was the start of our relationship with the Wesley Hospital. And again, very fortunately, whether this particular consultant was the one taking patients that day, or whatever, I don’t know, or whether phone calls had been made. But we met Professor Dr Simon Durrant later that day, and he stuck with us, you know, we were with him for the whole journey, the whole 10 years. 

[00:05:57] Maryanne: 10 years. Goodness me. That’s a, you know, that’s a, a long commitment, isn’t it? And one that I remember there was a lot of trips to Brisbane over that 10 years. 

[00:06:09] Ian: Well, when Dr Durrant eventually found out what the situation was, he decided that Cheryl had stage 4 non-Hodgkin’s lymphoma. And out of four stages, uh, 1, 2, 3, 4, 4 is the most severe one. So, she’d been putting up with a lot internally and a lot at home that she wasn’t letting on to anybody. Unfortunately, there were a number of tumours all over the place. So, treatment started very quickly. She was moved from, 4B at the Wesley Hospital into 4W, which is the Leukaemia High Care Ward and from that first time that she flew down to Brisbane, she was in the Wesley for two years and about half of that time, just under half of that time, she was in ICU in one form or another. So she had a pretty rough ride. 

[00:07:02] Maryanne: She had a pretty rough ride health-wise. 

[00:07:05] Ian: Yes, yeah, yeah, yeah. The Wesley Hospital, I’ve got to say, you know, right up front, is as far as I’m concerned and she was concerned, is the best hospital in Brisbane. The best place that she could have been, and the best place in Queensland, and probably the best place in Australia. And she happened to land it right with Dr Durrant. 

[00:07:24] Maryanne: I think it’s very important to have faith in who you choose as a treating specialist and to also have confidence in your treating team. I think they’re key elements for giving that sense of peace that you’re in the right hands. 

[00:07:38] Ian: Very much so. Yes. Yeah. Yeah. I mean she had total confidence in Dr Durrant. And the treatment he was proposing and the path that he said, you know, that he needed to take. We had absolute faith in him. 

[00:07:49] Maryanne: And you were the stoic. 

[00:07:51] Ian: Ah, she was the stoic one. 

[00:07:53] Maryanne: I think you both had strengths. She was stoic in facing each day the challenges that were before her. And you had strength in, you know, you surrendered your time and you were devoted your time to someone you loved so much. They’re both challenges, but they’re just different challenges, aren’t they? Ian? 

[00:08:09] Ian: Oh, yes, yes. Yeah, yeah, yeah. Um, for the first two years she was in the Wesley Hospital, for the majority of the time. So we got to know the place and the people and the staff and whatever pretty well in that time. Within a very short time, one of the nurses in 4W, asked where I was staying and, and at the time it was in the Rotary Lodge just over the road from the hospital. And she said, “Has anybody introduced you to the Leukaemia Foundation?” And I said, “Well, I didn’t even know such an organisation existed.” So, again, probably within 24 hours, well, while I was sitting in the ward there, one of your colleagues came round. I can’t remember who the first contact was with, somebody from the ESA village, but her remit was the Wesley Hospital. And, she came round and that was it, the introduction was made and, again, I said how impressed we were with the Wesley Hospital just now, Leukaemia Foundation supported us, both, the whole 10-year journey. It was just happening in the background. There were people to talk to, I had accommodation in one of their villages in Brisbane, the ESA village, and I was in there for two years as well. We had our own unit there, and I realised fairly soon the importance of having your own unit, to all the front door that you can shut. With your kitchen, with your own washing machine and dryer and all that sort of stuff. And, there was even a minibus, running backwards and forwards, not only to the Wesley, but you know, around to all the hospitals in Brisbane, morning and afternoon to drop the carers off or the visitors off and, and pick them up again. I learned fairly quickly that, you know, one of the reasons for, having your own unit was, either, contamination from the chemotherapy, or cross infection with other people, because infection is a huge issue with non-Hodgkin’s lymphoma and, and so it proved over the years. 

But I stayed in that unit for two years, and to start with Cheryl’s treatment was one week on and three weeks off. So she was a week in the hospital in the Wesley, and then three weeks off which she came and stayed at the ESA village, with me. She was too ill to go back home to Hervey Bay and we had to stay within an hour or so of the hospital. So again, you know, Leukaemia Foundation came up front when we needed them. And I saw that time and time again with many other people that were in the same situation, perhaps, you know, a couple with youngsters or children with various forms of leukaemia. Leukaemia Foundation was always there, always there, and there was always somebody to talk to. I built up a pretty good relationship with a number of the staff there, yourself included, obviously. 

[00:10:51] Maryanne: And so when things weren’t going well for Cheryl, you were back at ESA, Ian? 

[00:10:56] Ian: Yes. Yeah. Yeah. I was in ESA for the whole time. She had number of relapses and, a number of reactions to the treatment. So as I say, she ended up in ICU on a number of occasions during that first period. And also in the subsequent 10 years there were a number of happenings that necessitated her going back into ICU again, unfortunately, for varying amounts of time. But all the time Leukaemia Foundation was there at my back and at her back supporting us. I’ve got to mention Amanda Ferguson. 

[00:11:28] Maryanne: Hmm. She was a key support person for you. 

[00:11:31] Ian: Yes, she was a nurse at the Wesley in 4W and then she moved over to you guys. She came to you guys for a number of years, didn’t she?  

[00:11:39] Maryanne: Yes she did. 

[00:11:40] Ian: So we kept in touch then. She was a great help. Yeah, I believe she’s now gone back to the Wesley, back to 4W. 

[00:11:48] Maryanne: She has. Mm hmm. And is still in contact with you, I believe. You know, the connections made during a time like this. They are important, aren’t they, Ian? 

[00:11:57] Ian: Oh, very much so, yes. It was important to me to build up relationships with all sorts of people. 

[00:12:04] Maryanne: Mm. 

[00:12:05] Ian: The ward staff, the nurses, the doctors, the specialists, the consultants, um, and people that you met every day. I thought it was really important to build up a relationship, not necessarily a friendship, you know, there were a few very good friendships that resulted from that. 

[00:12:22] Maryanne: Mm hmm. 

[00:12:23] Ian: But just build up a relationship with the people that you meet every day. 

[00:12:27] Maryanne: Are you happy to share, Ian, because, when I’ve invited you here today to share about your experiences whilst on treatment with Cheryl, but also to share what support surrounded you and what did that support look like when you were told that Cheryl’s treatment was no longer available and that you needed to look at end-of-life and then following losing Cheryl, what that support looked like for you? 

[00:12:55] Ian: It was critical, it was crucial. Cheryl had been in the hospital full-time for two years, as I said, then she had eight years of a reasonable life. She was still undergoing treatment every four weeks. We had to go back down to the Wesley every four weeks, into the daycare unit. Eventually, they were able to do that treatment back up at Hervey Bay. So we only had to go to St. Stephen’s Hospital but, over that whole period, we met so many people, caring and giving people, too numerous to mention. There was just somebody every day that, did something that just made you feel good or made you feel a little bit better or cheered you up a little bit or brought a smile to your face or whatever.  

But the last journey that Cheryl made down to the Wesley again was the RFDS and, um, just as a little aside there, um, we decided probably halfway through her, her journey of 10 years that, we would ignore all the calls that came through from all the wonderful charities around Australia. And we were going to concentrate on two, which was the Leukaemia Foundation and the RFDS. And so we started regular donations to both of those organisations. And I’ve kept them going now, even two years after Cheryl has passed. It’s something I shall keep doing, you know, for as long as I can. And also we both decided at that time that we would put a bequest both of our wills for both of those organisations. So, fundraising, I know, is hard work. So if we can give back a little bit for you know everything that both of those organisations gave to us, then that’s great. Anyway, you asked about the journey at the end. 

[00:14:37] Maryanne:  Yeah. The journey at the end and then, how have you been supported since Cheryl has passed? 

[00:14:43] Ian: Well, again, Leukaemia Foundation has always been there, a phone call away. And sometimes if a phone call is not sufficient, I can knock on somebody’s door. Yours principally, but also, Amanda and Kate and others at the foundation. Built up a very good relationship with Marie at the ESA village as well. 

[00:15:04] Maryanne: Hmm. You know, it’s important the connections we make, isn’t it Ian? You know, knowing you and knowing Cheryl over many years, I could see the investment in what the two of you did try to seek yourselves with, you know, the connections you made. And I loved hearing, knowing you since Cheryl has passed, you sharing how you’re still, you still remain in contact with her treating specialist and he paid you a visit up in Hervey Bay and also the team of nurses at the Wesley. 

[00:15:35] Ian: Yeah we talked about, it’s a difficult subject, you know, funerals and, and that sort of thing, and what do you want to happen, and so on. Many people, and us included, find that, you know, a really difficult subject to talk about. But Cheryl had decided that she only wanted a very small, personal funeral, and as she passed away in the Wesley in September 22, I decided to have the funeral, and the service in Brisbane rather than coming back home and all the other associated challenges. So, um, I booked with a funeral mob in Brisbane, the White Ladies actually. I don’t know why I chose the White Ladies, but just something, something about them felt right. And I invited a couple of the nurses from the hospital, said, ”If you’re available, it’ll be good to see you” and I was absolutely staggered. We had seven nurses from the hospital turn up at the funeral. 

[00:16:29] Maryanne: And that’s a true indication of the impact that you’d made. 

[00:16:33] Ian: I guess so. Yeah. But you know more so the impact that Cheryl had made on the staff, I think. But some of those, 10 years down the track were very senior nurses in positions of great responsibility and so on but they’d been with us all the way through. So I was very humbled by the fact that they turned up at the funeral, they were, I didn’t expect anything like that at all. And, and Cheryl would have been very pleased as well. And of course, we had representatives there from the Leukaemia Foundation there was Marie and Amanda. And again, Cheryl would have been very pleased that people had taken the time and made the effort out of their working day to come and attend.  

[00:17:14] Maryanne: Absolutely.  

[00:17:15] Ian: But the support goes on, really does. I’m still talking to some of the nurses at the hospital. I’m still talking to some of you guys at the Leukaemia Foundation. And I know that, you know all I’ve got to do is pick the phone up and somebody is there to listen. We had a couple of sessions, you and I, Maryanne. 

[00:17:32] Maryanne: Yes, we have. We have. And I think it’s valuable to know that you do have the comfort of having one, someone around who you can reach out to, who understands what the journey is like when you have a blood cancer and how it can extend over many, many years. And how over those many, many years you can build connections with your treating team members, with your treating specialist and of course with the different staff at the Leukaemia Foundation because you’ve utilised their accommodation. Those connections are really vital. They give you stability, they give you comfort and you just feel both, you as a carer but also for Cheryl, you know that you’ve got someone who you can reach out to. So you don’t feel so alone. 

[00:18:18] Ian: It’s important as well from our point of view, from our side of the arrangement, that it doesn’t finish when the patient passes. 

[00:18:26] Maryanne: Yes. 

[00:18:27] Ian: And I know that I can pick the phone up if I’m in need of a chat to somebody, and you or somebody else will be there. It is really important, I think. It’s somebody that not necessarily has shared the journey with you, but somebody who is aware of it. 

[00:18:44] Maryanne: Mm. 

[00:18:44] Ian: You don’t have to start from scratch every time of, oh, you know, this happened, that happened, and all that sort of thing. In some ways, we all went through the journey together.  Support afterwards is crucial. It’s often easier to talk with people outside of the family. I mean, I’ve got two sons, one here in Australia and one in the UK, and they’ve been extremely supportive, but sometimes it’s easier to talk to people one step removed. 

[00:19:10] Maryanne: Yes. 

[00:19:10] Ian: Somebody you consider as a friend, but not necessarily part of the immediate family. 

[00:19:15] Maryanne: Absolutely Ian. And I think too what’s really important and what I recognise in you is that there’s no judgement either in time to remain connected. Because our door is always open. So, you know, grief comes and ebbs and flows, but it does sit with you. Some days you hold that space well, and some days you hold that space where you need someone to hold your hand. 

[00:19:41] Ian: Yeah. And, pushing the boat here, you know, Leukaemia Foundation has always been there, and I thank every one of you for that. If we go back to Cheryl’s funeral, it was Tony, our son who lives in Melbourne, Tony and I decided that we wanted to run the funeral ourselves. We didn’t want a celebrant or a third party involved. And, I think, at the end of the day, we were pleased that, that we did it that way, that it worked and it worked for us, and it worked for Cheryl. But, one of the things that I said towards the end of my part of the funeral was, a message from me to everyone here today, for the people that you care about most. Say good things to them today. Be kind to them today, hug them today, tell them that you love them today. For sometimes, tomorrow is too late. 

[00:20:32] Maryanne: Very powerful. And it’s true. And you of all people, you know, having that lived experience of loving someone so much and losing them, you’ve got that urgent message for people to say, “Stop. Look at what’s in front of you. Make the most of a moment. Live in the present. Make some good choices around how you’re spending time.” Because sometimes when you do lose someone, you don’t want to be then spending time thinking, “Oh, I should have, or I wished we had have,” or anything like that. It’s about recognising the time that was devoted to that person who was in need during that time, during a challenge. 

[00:21:15] Ian: Yeah, whilst the patient, your wife, your husband, your child, or whatever is, is ill, not necessarily in hospital. It’s important, I found, to try and continue life as normal as possible. You know, to go on day trips, to go on outings, to go out for lunch, you know, to go out for morning tea somewhere, to visit friends. 

[00:21:35] Maryanne: And you did that beautifully, Ian. I remember the two of you heading out for morning tea and lunch. 

[00:21:42] Ian: Yeah, the other thing that I’ve got to bring into the conversation, there’s two things actually, the palliative care team at the Wesley. At the time, Dr Ralph McConaghy was the, uh, the palliative care specialist, and it’s important to make contact with that team not necessarily only at the end of the journey. Cheryl knew Dr Ralph for probably eight of the ten years that she was ill. At one point, he ran a pain clinic she was referred to him, to his pain clinic. So we saw him probably two years into the journey and, you can get all sorts of benefits from talking to other specialists rather than just your own haematologist or the medical oncologist or whatever. I found it in retrospect, it was important to bring other people into the journey who all have their own specialities and then can bring other benefits to the patient and other treatments to the patient that you wouldn’t immediately think of. Just to make their journey a bit easier. 

[00:22:49] Maryanne: Mm. I loved that you’ve mentioned that. I will jump in here because as I know you’ve listened to my conversation with Dr Ralph McConaghy and he shares himself about the importance of diffusing that attachment to palliative care and recognising and embracing palliative care specialists from the beginning and, opening up to seeing that they help primarily with a lot of pain management.  And as you’ve just shared there, Cheryl had an 8-year relationship with Ralph McConaghy because of his attention to pain management. 

[00:23:30] Ian: Yes, yes, palliative care isn’t necessarily about end of life. That’s part of it. 

[00:23:36] Maryanne: I love that you’ve said that. Yes, it’s not. Yeah. 

[00:23:39] Ian: It’s important having built up the relationship with somebody like that over the years, again, that they are there at the end. 

[00:23:47] Maryanne: Yep. 

[00:23:48] Ian: And something else that I wanted to bring up, blood donations, statistics for blood donation in Australia. During their lifetime, about one in three people need blood, but only one in 30 donate. 

[00:24:02] Maryanne: Yes. 

[00:24:03] Ian: So there’s always a shortfall of blood. Now because we came from the UK, many years ago, we weren’t able to give blood in Australia for a number of years, until November last year they lifted the embargo and I felt it was incumbent on me and really important for me personally that I started giving back, putting some back into the bank. Over the 10 years, Cheryl had hundreds, literally hundreds of transfusions.  

[00:24:32] Maryanne: And how grateful you are. 

[00:24:34] Ian: You know, that blood was all, it was always there when she needed it. So I feel, it’s really important to me to put as much as I can back into the system. I’ve chosen to give plasma rather than whole blood because that has the potential to help probably twice as many people as a whole blood donation. Plasma can be used in all sorts of different treatments. So I’ve chosen to give that, and plasma can be donated every two weeks, which is great. So, I’m booked in every two weeks for the foreseeable future. 

[00:25:06] Maryanne: Oh, how wonderful. What a contribution, Ian. How thoughtful and wonderful and simple. 

[00:25:12] Ian: It takes an hour and a half out of your week. And, the people at the Red Cross at Lifeblood are really friendly, easy to get on with, happy, chatty people, and the process is just so easy. Yes, there’s a needle involved, but it’s one needle, every two weeks and please, anybody that’s listening to this, it is vital that more of us Australians give blood because there’s often a shortage and if it was you or your loved one at the end of the queue waiting for that blood, it changes your perspective, quite considerably. 

[00:25:44] Maryanne: Absolutely. And I love that you’ve mentioned that, Ian. Thank you. Just looking at time spent here this morning, I’d like to thank you for sharing so honestly about your time with blood cancer and Cheryl and your loving relationship and also just you as a person, both you and Cheryl, over those years building connections as you have with medical treating teams, with people at the Leukaemia Foundation and I’m sure many others. And recognising too that, you know, even in the sadness of losing Cheryl, that you are still committed and connected with people that you met during the time of treatment and that you recognise the value of giving back and the value of giving back with your donations of plasma, the value too of giving back and even sharing your story here on our Talking Blood Cancer podcast. Thank you, Ian, for joining me here this morning. Is there anything that you feel that is of real benefit that you’d like to give to other carers, any message that you’d like to impart to other carers who listen to our podcasts. 

[00:26:53] Ian: The important thing to remember is that you don’t need to be alone. There’s always somebody that you can talk to, that you can call upon. 

[00:27:03] Maryanne: Mm hmm. 

[00:27:03] Ian: And whilst you’re caring for your partner or whoever it is, you need to consider yourself as well. Many people said this to me over the years. If you were a carer, if a patient’s in hospital or if you’re a carer when the individual is at home, you’ve got a lot of responsibility. And so you’ve got to make sure that you eat healthily, that you exercise, that you make time for yourself. If you fall over, it just complicates the patient’s life far more than it needs to be. So yes, look after yourself. Be kind to yourself, and talk to people. Seek help. If you’d asked me 10 years ago before this journey started, or 12 years ago before this journey started, if I would ever talk to a counsellor, I would probably have poo-pooed the idea. But, the benefit that you have from talking to people that you meet over the journey are massive. They’re huge. They can’t be understated. If there’s somebody at the end of the phone or somebody’s door you can go knock on. It’s vital when you’re not having one of your best days, and they happen. There are many, many good days and there are sad days as well, and sometimes on those sad days you need somebody to hug or hold your hand or just talk to. 

[00:28:20] Maryanne: Absolutely. And we’ll always be there. Our door is always open. So I think that’s a really lovely message to give to people. You know, the power of sharing what’s happening in your world to just get that support when it’s needed. 

[00:28:35] Ian: Yeah, even if it’s just catch up over a cup of coffee, or morning tea or lunch or whatever, it just spreads the load a little bit and it just makes life just that little bit easier if you’re not having a good day. 

[00:28:47] Maryanne: Thank you, Ian. It was lovely spending time with you here this morning. 

[00:28:50] Ian: Thank you.