For the first episode of season 5 of Karger’s The Waiting Room Podcast, we spoke with Alastair Boyle about his experiences with blood cancer, his work as a patient advocate and trustee as well as Blood Cancer Awareness Month in September.

Ally was diagnosed with myelodysplasia, a type of blood cancer, in 2008 and eventually had to retire from his work as a firefighter in 2014. He then focused on patient and public involvement and providing input to charities, research studies and committees, for example, by serving as a Trustee for Blood Cancer UK.

If you are looking for more detailed information on the signs and symptoms of blood cancer, follow this link to the section of the Blood Cancer UK website which discusses them and has a video talking about what to look out for.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Hello and welcome to the Waiting Room Podcast.

Hi Alex. Delighted to be here. Nice to meet you.

You’re welcome. Now, let’s get right to it. Despite being the fifth most common cancer and the third biggest cancer killer in the UK, blood cancer doesn’t receive as much profile as the other four common cancers. Why is that?

It’s difficult, isn’t it? I think part of it is because, you know, there are, what’s it, 134 different blood cancers, and maybe people think of them as that. You know, so people probably think about leukemia. Some might know lymphoma. But beyond that people don’t really know. I didn’t know what blood cancer was when I was diagnosed. I had no idea. And I think it’s difficult when you’ve got this disparate group of conditions, and a lot of people don’t actually know they are blood cancers. To bring that together, so people understand actually what you’ve got is a blood cancer. And understanding that does lead to better support for people, I think.

Now you mentioned that you didn’t know much about or anything about blood cancers before being diagnosed. So, please tell us a bit about your own patient journey. And that is with myelodysplasia if I’m not mistaken.

That’s right, yeah. So, about 16 years ago, my wife was pregnant and she wasn’t sleeping very well, so I wasn’t sleeping well. I was a senior officer in the Fire Service. So, busy, stressful job. I’d be in the gym early in the morning, and I’d be working till late at night. And so, suddenly I became really exhausted, and I just assumed that’s all it was. Exhaustion, or perhaps a virus. And then after my daughter was born, it just got worse and worse, and I had to go off work sick. And what the doctor said was: “Oh, it’s just a virus. You’ll be fine.”

But it got to the point that I was, you know, so, I was a 37-year-old firefighter who had to crawl upstairs to go to bed. I was confused. I remember one day I was outside my house and I said to my wife: “What am I doing?” And she said: “You just, just get in the car.” I’m like, “I don’t know what I’m doing.” And she said: “You need to go to bed.” And then what followed was eight months of to and fro to doctors, and then eventually hematologists who couldn’t understand it and just said: “Oh, it’s another virus. It’s another virus.”

And it was, but they were happening because my immune system was massively compromised because as it turned out I had myelodysplasia. And I only found out that when I had a bone marrow biopsy, and then I was sat in a room and they told me what it might be. So it might be this thing, myelodysplasia. I made the mistake of googling it. And then when I went back, I said: “Oh, you said you’d do another biopsy to see if it’s this thing.” And they went: “Oh no, it’s definitely that”. And I knew nothing about it. I didn’t know what blood cancer was. And they didn’t describe it as a blood cancer either. They said: “You know, think of it as a bone marrow failure disorder.” Well, if you google bone marrow failure disorder, that doesn’t lead you to patient support groups, and you need it. I didn’t get any information or anything. So it was really confusing.

And then when I said: “You know, what does it mean?”, thinking, you know, a bone marrow failure disorder will be like a virus, it will go away, to be told: “Well, it’s difficult to say for certain, but I would imagine that you’ll be as ill as you are for a couple of years. Then you’ll become really ill. And if you don’t get a stem cell transplant, you’ll die.” And then I got information saying your average life expectancy is three and a half years. It’s what they said at the time. So, that’s pretty terrifying when you don’t know anything about the condition.

Absolutely. Yeah. So what did you do after that? Where did you find trustworthy and, most of all, understandable information about the condition?

Well, it was actually a while, because, you know, there was so much inconsistency when you googled to have a look, to see what it was. And, you know, the specialist was quite clear: “Don’t do that. Don’t look at it.” But it was actually over a year later when I put my hands on a trusted document. It was a leaflet that had been developed by Blood Cancer UK and MDS UK. And it was a patient leaflet I went through, it had all the different questions in it, and it was really helpful. And that gave me the courage to seek some more information from MDS UK and then to go back to my specialist and to say: “I want to be referred to a center of excellence.”

I had assumed they all see thousands of cases like me. And it’s only when I went there, they said, you know, I found out that MDS’ average age of diagnosis is still in the 70s. So, as a 37-year-old, I was quite unusual. And they’ll be seeing very few cases. I assumed, I don’t know how many blood cancers there are. Don’t know how many people have got MDS. I assumed, Oh, he must be an expert. He must be dealing with loads of these people, people like me. And what I realized is: No, that’s not the case. And that was quite a difficult conversation at times to have, but, you know, we got there and then.

Excellent. Now, how did you experience living with myelodysplasia? I mean, especially regarding mental and physical health. You mentioned that you worked as a firefighter, so a pretty stressful job. At which point couldn’t you pursue your job any longer?

Yeah. Well, immediately my consultant said: “You need to retire because there’s too many risks. You’ve got no immune system.” And I said: “You know, well, I’ve just moved house. I’ve got a new baby. I can’t not work. What can I do?” – “Well, you’ve got bigger problems to worry about.” And I suppose that’s that patient involvement part of it is, you know, in his mind, probably, my condition probably was the biggest thing I should be worrying about. But actually it’s not for the patient. You’re worrying about your family. You’re worrying about your circumstances. You’re worrying about a job that I fought very hard to get and have done my very best to be the best possible person I could in that job. And that became really difficult.

So what I did for a while was, the Fire Service were very, very supportive and had a very good occupational physician. And so the doctor that I saw in the Fire Service was very supportive. They allowed me to work without going to fires for a period of time. And I probably used work as a distraction, if I think back about it. But for me, right from the beginning, in terms of my health, I had an absolutely crushing headache. You know, it feels like someone is squeezing the back of my head. My glands and my armpits, my groin were in agony all the time.

And, you know, this is still, this is my daily experience now. I felt really nauseous. The fatigue was incredible at times. I could, as I described it, someone could set fire to the chair I was on; I wasn’t convinced I could get off it. It was so bad. But I managed to keep working, and that was my experience for a while. I thought, this is what I’ll do. In fact, I kept working for a good few years, and eventually I got a really, I got it through the support of the Fire Service doctor. He was able to explain, you know, that when I go to fires, I’m taking command of them outside, I’m not going into the building, the risk is manageable. But actually, if you think about it, it’s the patient’s risk. It’s not your risk as a clinician. So, you know, we recommend them to you. Firstly, sit them down and give them some proper information because you haven’t given us prognosis. You haven’t explained what it means. You’re telling what you can’t do, not what you can do.

And that really helped because what happened after that was the specialist had me back in and said: “Look, I’ve received a two-page letter from your occupational physician. I’ve written a three-page letter back to you explaining everything. I’m going to read it to you. I’m then going to leave you for half an hour to read it yourself. Then I’m going to put a clinical nurse specialist with you to sit and answer any questions you’ve got immediately. And then I’m going to come back and sit with you.” And what an incredible difference that made to my relationship both with my hematologist but also my understanding of my condition. And that makes me think, I was really lucky I had someone fighting for me, who, a medical expert who could say to me: “That’s not right. Here’s the information you should have been told.”

But what that meant was, we got to a point I could go back to my full duties. And horrifically difficult all that was, I kept doing that for a number of years until it got to the point. There was a year, every year after winter I would be so unwell, I would need to go off for a period of time because my body struggled through winter, fighting all the different conditions, and I’d just be too fatigued. And then there was a year where, I was in a very senior role in the service, and I was basically working, going home to my bed, working, going home to my bed for a year. And I didn’t really see much of my family, and I was just broken. I was so fatigued.

And my specialist had said: “Look, I know how stubborn you are, and we’ve been telling you for years you should really retire. I need to really tell you now that your bloods are all starting to go downhill. And, it’s not about you making your life more difficult than you need to be. There’s only one potential cure. It’s a transplant. You’ve only got a 30% chance of surviving that and your disease not coming back. You’re going to put yourself in a position that that’s going to happen to you sooner than it should. You really need to retire.” And that’s what I had to do. I had to retire from the service, which was like a bereavement. I’m still, ten years later, I still feel bereaved about it. You know, it’s the greatest thing I’ve ever done. I loved it, but the reality was that’s where I was. And retiring probably saved my life because my bloods are still, you know, really quite poor but they’re, touch wood, stable, and I’m able to function better.

And I suppose the other bit about, going back a little bit, was, one of the other things that happened, as I mentioned earlier on, I had pursued my clinician to seek out further information. That changed the way he thought about my condition as well. You know, because he realized, actually, you’re completely different than someone under 50, and, you know, remember that I was under 40 with this condition. You’re in a totally different risk category than would be considered. So, all of that together meant I was able to pursue my career for longer than I probably should have. But eventually it just became too much. And the reality is that’s it was deeply unpleasant and upsetting, but I’m in a much better place because of that. I’m so glad that I was persuaded to that position because it really wasn’t helpful.

Yeah, that’s good to hear. Now, what would you recommend to other patients living with blood cancer, regardless of the type?

Yeah, I mean, I think the first bit is you’ve got to be your own advocate. So, whilst you might not want to, googling can be difficult. You need to find a source of trusted information. When I was able to get information from Blood Cancer UK and MDS UK, it gave me the confidence to go back and politely challenge some of the assumptions. So I went back and said: “I understand there are centers of excellence for myelodysplasia and realized that you only deal with a few cases a year. These people deal with a lot. I want to be referred and I’m not, this isn’t me questioning your abilities. This is my patient right. And actually, I think it would be better.”

And there was a resistance at first as though I was questioning their competence, which I wasn’t, but once they referred me, they said: “Okay, well, actually, what we’ll do is, there’s a clinician we know who’s really good with MDS, runs a center of excellence. Let’s run your case by him, and if he thinks you should be referred across, we’ll do that. But maybe there’s a middle ground.” And they found this middle ground where they said: “Actually, it’s been really good because he just sent back a study which had been done in Germany and people with MDS who are under 50. It shows that your average life expectancy is probably more like eight years rather than the three that we thought. It says really clearly, you know, having spoken to him, that we should try not to treat you with any drugs as much as possible, as long as you can go on with a low immune system.”

And both my red and white count were out then; my red count came back to a better place. “Then that’s what we should do, because it’ll leave you more transplantable. We haven’t thought about any of this stuff, really, and it’s been helpful.” And even now, every now and again, I see it’s the time to run my case past them again, yeah probably will, just to make sure there’s no clinical trials out. So that’s the first. But you’ve got to be your own advocate. You don’t have to become the world’s greatest expert in your condition, but you have to remember that nobody knows your condition better than you. So when you’re speaking to a clinician and you disagree with something that they’ve said, don’t be put off by their expertise and their phenomenal training, because they are not living in your body. So yes, they are experts in hematology, but you’re the expert in your condition, and you should see yourself as an equal in that regard.

Because there are times were people will make assumptions about what’s important to you, and as I say, you know, the assumption at the beginning was my work would be the least important thing rather than the most. And also, there might be times where you see information or you see how another patient is being treated and you’re able to bring that back to them to say: “Have you seen this?” or “Do you know that?”. So that’s the first thing I would always say: Try and be your own advocate, find the trusted sources of information and then offer a degree of constructive challenge when needed. Always take the time to think, you know?

So, before you go to an appointment, sit and think about what your questions are, what’s happened to you, what you really want to know. Because it’s very easy to go into these appointments and come out actually in a blur and not really knowing what was said, and they haven’t answered the questions that you wanted. And there were times where I had a couple of appointments and I’d come away going out I just feel a bit dissatisfied that they’re not understanding just how difficult some of this is, because one of the things about my condition is I look fairly healthy. Exercise helps me. There were times when I was, you know, really quite fit. So I looked outwardly great, but inside I was broken. And I would sometimes write a letter and I would go in and say: “Look, you know, regarding the conversation, I’ve written a letter, I want you to read it after I’m away and think about it.” And then I would come back and we’d go through the questions. So, I think you need to do all of those things because sometimes it’s easy to look at the people with all their expertise and just how busy they are, and just move into a mode of “I don’t want to trouble the doctor. They’ll know best. Thanks very much for what you’ve told me.”

And, you know, I used to sit and when we were doing face-to-face appointments, I’d get my bloods done and I’d have to wait an hour or so for my results to come back. And I would sit, and the number of times I would see people come out of the room, the consultant room, and looking confused, and they wouldn’t really leave. And I would say: “You know, what’s up?” – “Oh, we don’t really know what the doctor meant.”, were a bit confused. “Well, go back in!” – “Oh no, I couldn’t, I couldn’t bother the doctor.” – I said, “Yes, you could! Yes, you could! They’ll probably, he or she will probably be more upset if you go away with confusion or let’s get one of the nurses and they can help you.”

Because that was the tendency. People tend to get home and then go; “I don’t know.” And I certainly used to do that as well. I think the biggest thing is you need to take control of your conversations.

Absolutely. And that can be quite intimidating, right? And after all, especially after a couple of years, you could probably call yourself a patient expert. And that’s a way better expertise than probably the physician’s expertise, because, as you said, you’re living in your own body and you’re experiencing everything. So, you should be listened to.

Yes.

Now, you mentioned, patient advocates and patient advocacy, and I’d like to come to that bit because you focused on patient organizations and making people aware. How could patient advocates support other people? And how did you become involved with Blood Cancer UK? You’re serving as a trustee, and what does this role entail?

Yeah. Well, I suppose, for me, it started initially, the Fire Service is a very charitable organization. And so when I was diagnosed, I’d never heard of a stem cell transplant. And initially there was an organization, Anthony Nolan, which I’m sure you know, the blood cancer stem cell charity. And I had a conversation with them, thinking we could raise some money for them. I’ll do something. And what I realized was there was a desperate need for stem cell donors. And then we set up a partnership with the Fire and Rescue Service and Anthony Nolan, where we talk to young people about joining the stem cell register. So that first got that conversation about what I can contribute as a patient, you know, and over the years, we’ve put 20,000 people in the stem cell register and we’ve had 112 potentially life-saving donations.

And I thought that was it. That would be me, you know, retired now. I was doing a bit of that. That was helpful. But then Anthony Nolan had a conversation about, you know, they were setting up a patient involvement panel. Do you want to speak to some consultants about it? And I spoke to them to say, you know: “This is what I think as a patient, etc. etc. Like I said. This is, you know, this is where, the things I think are important. Things that are often discounted, you know, patient-reported outcome measures. No one really asks how you feel. They just talk about your bloods. No one actually records that. That’s not fair.” And during that conversation I said: “I’m quite interested in this patient involvement. I hadn’t heard of it before, but, you know, it’s clearly important. Who who’s really good at it?” And they said: Oh, Cancer Research UK are really good.

And so I ended up, I joined Cancer Insights Panel with them, and that was one of the best things I ever did because it’s an unbelievable privilege to sit with people, listening to them share their stories. There’s a broad section of people affected by cancer. It was patients, it was parents, some of whom sadly passed away. And it was tremendously empowering. And also during that I realized “Oh, wait a minute. Maybe I’ve got something to offer because with my background, I understand risk, I understand strategy, I understand how to deliver things.” And we were on the Research And Strategy Panel. So, you know, you’d be having conversations with them about what the strategy looks like, etc. And because of that experience of patient involvement, it led me to really reconsider where I was and to think: “Actually, maybe I’ve got something to offer.”

And as a result of that I joined, I went through quite a difficult selection process to join my local health board as a non-executive director, and in that you could bring in the patient voice, along with all the other skills I have. Because we oversee the delivery of health services through the lens of our experience, and part of that is as a patient, and also look to do patient involvement with other organizations. And one of those was Blood Cancer UK, who, in the middle of the pandemic, and you can imagine how terrifying the pandemic was for me. I basically didn’t leave the house for three years.

They were deciding doing a piece of work to get patients to help prioritize their research priorities. You know, to go back and say, you know: “Validate this. This is what our clinicians and our experts across the UK and beyond think is important. We want to know, do these align with what patients want?” And I was so impressed with the way that they did, the way they prioritized the patient voice, the way they supported us, and the way that they actually run their events. That bit about how they made us feel as patients. I was so impressed with that. And at the same time they were advocating really clearly about how people like me were supposed to get groceries delivered, how do we get access to the care that we needed. There was no antivirals at the beginning of the pandemic, as you’ll remember. It was basically, and no information of what it meant for immunocompromised.

We just got a letter saying, you know, even before shielding started, my hematologist said to me: “Listen, I know we tell you every year, you’ve got to lock yourself away because of the flu and everything, you know, during winter. You’re gonna have to do it now, and you know what shielding is because you’ve done it before. You’re gonna have to.” And then a month later, the shielding guidance came out. And all of that, Blood Cancer were in the middle. As information was coming out from government, I could go to Blood Cancer UK and I could see it translated into what this means for you as a blood cancer patient. So that give us certainly a warm and fuzzy feeling about Blood Cancer UK and a deep affection for them.

And then, once I’d had that connection, they advertised for trustees or for new trustees. It was four of us joined, and I liked the opportunity to do that. And then, you know, as a trustee, it’s quite similar to being a non-executive on a health board where you’re overseeing, helping set the sense of direction, making sure the public, the money that the public works so hard to raise is spent appropriately. You’re making sure that what the organization does is in line with the strategies and charity laws and everything else. And then, in addition to that, you’re offering your support and guidance, which is the same thing happens, where, if you’ve got potential skills that you can support them with you can. And how I describe it is we’ve got our nose firmly in the business to see what they’re doing to make sure it’s appropriate. But we keep our feet out. You know, it’s not our job to run the organization. It’s just to make sure it’s been done properly. And that has been tremendous.

And even now I chair their Research Governance Committee. First patient in the history ever to chair their Research Governance Committee, and I think that’s unbelievable. What better statement of what Blood Cancer UK feel about the value of patients and the patient voice than to having a patient chair the panel that decides where they are spending their money on research, which is tremendous. And that’s going to expand to look at some of the mission stuff, you know, elements of it as well.

And it’s been amazing. It’s been so good. And I get to see all the time, I have this thing in my head; words, actions and attitudes of all. But to see the same thing, there are lots of people who write, you know, either our staff or patients are the most important group of people, but then their actions or their attitudes look different. And I know when I’m with people from Blood Cancer UK that their actions, what they write down and their attitudes towards patients and the importance of the patient voice are consistent and true. So, I love it.

Sounds perfect. Now, we spoke about patient advocates and patient involvement. And, in a nutshell, so what does patient empowerment mean to you personally, especially given your collaboration with charities and your role as a trustee? I think you basically answered the question already, but just in a nutshell.

Yeah. Well, you know, I think, it’s that. But back to what we said earlier on about being an expert through experience. What patient and public involvement means, there’s two parts, but one is that you sit alongside a clinician or, you know, strategist within a medical research charity, with an equal footing. And you share what matters to you in a way that they consider and factor, you know, “this is actually the scientific perspective”. And that’s really important. And I think it brings validity and agency to people who are often unheard, particularly when you think about people who have suffered deep inequalities because of their condition or already suffered deep inequalities because of their life condition, and then now their health condition makes that even worse.

And as one of them describes, a fabulous lady I cone had a conversation with, and she had multiple disabilities. She was from an ethic minority and living in a deeply deprived area of London. And she said: “It’s not that we are seldom heard. I think we’re just easy to ignore.” And I think sometimes patients, and particular patients in particular circumstances, are easy to ignore because they don’t get the face time, they don’t have the agency. They need to have conversations with people of influence. And that’s why I think patient involvement is all about. It’s about really bringing together the experience and living circumstances of people affected by the condition, put close to the people who are designing treatments or thinking about what is an important research perspective, what others, and that makes a difference.

You know, I chair a patient involvement panel for Cancer Research UK, and I sit on two of their funding committees. We sit as an equal to these international scientists round the table and say: “Actually, no, the patient involvement design here isn’t good”, or “They haven’t really. It’s an afterthought. They’re ticking a box about patient involvement. They’re not really asking people what they think.” And that’s what is. And then as an individual, for me, it’s been completely transformative because it was patient involvement that led me to think about something to offer. It was patient involvement that led me to have that sense of purpose, which a lot of people use to make their life experience better. I think two things really mattered to me, that helped me is purpose and perspective. I’ve got great perspective from the Fire Service.

I don’t spend a lot of time feeling sorry for myself because I’ve seen people on the worst day in their life, and they didn’t expect it, and they didn’t have the opportunity to say goodbye to family members. And I’ve got a sense of purpose that the Fire Service gave me, and that now patient involvement gives me, and I can see, particularly for people who are in quite desperate circumstances, sometimes just the ability to feel they’re making a difference helps them. So, I think what I always say to people is: “Don’t just think about what you’re trying to achieve organizationally. Think about the difference it makes for the individuals to be able to share their story, to feel listened to, you know, to feel heard, to feel that they’re no longer easy to ignore.

So, I mean, I think it’s a tremendous, I mean, I think it’s beyond that, isn’t it, it’s an essential. It staggers me when people think they can go about a process of research or deciding what’s important to patients without asking them about it, you know, without, “we’ll decide what matters to patients without speaking to them. We will decide an arbitrary, you know, here’s how long you should wait in hospital, or here’s your waiting time for the treatment” rather than actually: “How did that make you feel?” Would you rather have waited a bit longer and got a better answer than being rushed out the door before you have an arbitrary time? So, there’s lots of bits about it, but I think involvement is one of the most fundamental things that we should be doing in everything.

Absolutely. Well put. Now, in your opinion, what needs to be done to beat blood cancer?

Yeah, I think there’s lots in here, isn’t it, and I think in Blood Cancer UK we thought really careful about “It’s time to beat blood cancer”, because we thought “what does that mean to people” when actually, is it realistic, and we genuinely think it is. I think, for me personally, it starts with there are some phenomenal clinicians and there are some phenomenal treatments thanks to the incredible researchers that are out there. So, it starts with making sure that those are delivered equally no matter where you are in the country. So, actually, all our existing treatments are accessible. They should all be delivered superbly well and consistently well, and they should be available to as broad a section of people as possible.

Clinical trials, which are often the last chance for a lot of patients, we need those to be well signposted, easily accessible. It shouldn’t be, they shouldn’t rely on your ability to read English, your ability to string a sentence together. Whether you can find out about clinical trials and then persuade your clinician that that’s a good idea. So that needs to be done consistently well. It needs to be open particularly to minority ethnic groups that we know that they struggle sometimes, and particularly people in lower groups of deprivation. Sometimes their reading ability isn’t the same, so their ability to find information or their ability to access digital sources of information, that needs to be good. And then the research, we need not just an increase in spend generally supported by governments, but we need that consistent collective view with patients at the heart of it, about how to shift the needle forward. What we can have is lots and lots of medical research projects all doing roughly the same thing. We should have a consistent view of how we can help each other across.

Beating blood cancer is a big elephant. And I’m not advocating eating elephants, but it’s a big elephant, and we’ve got to eat it, right? There’s bits that Blood Cancer UK should eat, bits that Cancer Research UK should eat, bits that others should eat. We should all have a feast together to see how much we can do. And there’s bits that belong to governments and others that actually we should have a keen eye on and we should understand what it means to patients when they make a change. But we should be spending our whole time using that influence to say: “You need to get on with that part.” And if we can do that collective bit of action, then I think that’ll make the difference.

So, Blood Cancer UK, you know, we’ve got 23 million pounds, I think, just now invested in research projects. We have a collective view of what does that mean by patient group, by age, by condition. How broad are we putting that? We invest money now and thinking about fellowships for researchers who are growing that relationship together so we can start to collectively understand each other’s problems. and so all of those bits together, you know, the relationship, the researchers, what the researchers are doing, the amount of funding that’s going in, our broad understanding of conditions, working across borders, you know, so internationally. So, we need to make sure that we’ve got people going to the international hematology conferences. Growing those relationships is really important.

And then all of that needs to be underpinned by understanding the patient experience and understanding how many patients suffer purely because of their background, be that their ethnicity, religion, or, you know, ability to read or speak English, or where they’re located. If you’re in a health board area or trust area that doesn’t have an expert, that doesn’t have a relationship or doesn’t have a particular budget available – that shouldn’t be the case. So, we need to understand that inequality, and part of that is by this bit we’ve been speaking about, about empowering patients to understand what they should expect, and then to be confident to go in and challenge until they get it.

Sounds like we already beat it. But I really think, well, you know, I can see we’re making progress all the time, but there are people, you know, for me, I was diagnosed, is it 16 years ago, I was told I had three years to live. There was only one potential cure at the time, which is the stem cell transplant. Today, there’s still only one potential cure. And so for 16 years, I’ve been told: “Just hang on as long as you can. There’s a cure coming. There’s a cure coming. It’s not there yet.” So, there’s still a lot of work to do. But I feel really optimistic when I see the differences. I have conversations with researchers which leave my jaw on the table. What they is unbelievable. It’s beyond anyone’s normal understanding. And that fills me with optimism that we’re moving forward.

Sounds good. Well spoken. Now, this leads me to my last question, which is what are your plans or Blood Cancer UK’s plans for the upcoming awareness month in September? What is going to happen?

Yeah, well, I think Blood Cancer UK always have a phenomenal period of activity, and I would recommend anyone to keep an eye on the website. If you don’t, follow them on Twitter or social media, then they should because they have a series of action and activities. And the focus of those will be about growing awareness, you know, because we need people to understand what the symptoms are. We’re still in a position that the vast majority of patients like me experience a delay in diagnosis. It took me eight and a half years to be diagnosed from when I first went to my doctor.

There are still far too many blood cancer patients who are diagnosed as a result of attending an emergency room because they’re so unwell. And then they go: “Well, the reason you’re so unwell is you’ve got blood cancer.” And we need to get beyond that so that people understand what the symptoms of blood cancer are. People then would be more empowered to go to the doctor and say: “Listen, I think it’s a bit like, these symptoms all seem to be the same. Do you not agree?” And I don’t want to spoil anything, but there will be a series of activities that involve, that’ll show the patient voice. So, they’ll have phenomenal researchers explaining what blood cancer is and the difference that they can make.

Personally, I’ll be doing what I normally do on my Twitter, or X, as it is now, which is try to make, grow awareness, share my experience as a patient, and help people to understand what blood cancer is because there’s still far too many people, even after they’re diagnosed, that aren’t told: Oh, it’s a blood cancer they’ve got.

We’re pointing people to Blood Cancer UK as a trusted source of information and patient advocacy and support because alongside the research that Blood Cancer do, they also do phenomenal work supporting patients. You can phone in, there’s not only various forums that you can join to speak directly to patients about their experience, but we’ve got clinical nurse specialists and others who are available to provide support and help when you’ve got a question or a frustration about the way you’ve been treated. And also, it’s a great place to see what’s happening in terms of the future.

Excellent. That sounds great. I wish you all the best for the awareness month. And I thank you for your time and for your insights. It’s been an absolute pleasure speaking with you, Ally. I’ve really enjoyed it and I learned a lot, as always. Thanks a lot to you.

I enjoyed that, Alex. Thank you very much for having me on.

My pleasure. Bye-bye.

Bye.