Jo McNamara Rad Chat Host (00:00)
Hello everyone and welcome to Rad Chat, founded by me, Jo McNamara.

Naman Julka-Anderson (00:04)
And me, Naman Julka-Anderson. Rad Chat is a forward-thinking global knowledge hub where healthcare professionals can advance their expertise in therapeutic radiography and oncology. Unlike traditional academic resources, we blend real-world experience, expert insights, best practice, and patient perspectives.

Jo McNamara Rad Chat Host (00:21)
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Naman Julka-Anderson (00:38)
Just to let you know, our episodes may contain sensitive and difficult topics that you might find distressing or triggering. Please consider checking out another episode.

Jo McNamara (00:47)
So this is episode five as part of our anal cancer series. This series has been supported by our unrestricted grant from Incyte Biosciences. Incyte had no involvement in the development content or editorial review of the activities associated with this initiative.

So I'm so excited to have a regular guest now on Rad Chat who is Michael Anderson talking about his experience of anal cancer and the Bottomline charity he set up. So welcome Michael again to Rad Chat.

Michael Anderson (01:17)
Morning to you both.

Jo McNamara (01:18)
⁓ Thank you so much for joining us. So Michael, tell us a little bit about yourself. Who are you? What do you do?

Michael Anderson (01:24)
right.

What I do at the moment is I'm retired, which is wonderful. But for many years I worked in policy and research, make some sort political advice, that sort of thing

and retired. I was fortunate enough to be able to retire early and was all ready to enjoy my retirement by travelling the world and then I was diagnosed with anal cancer so everything sort of got put on hold pretty quickly. I was 60

when I was diagnosed and spent my 61st hospital in radiotherapy, St Bartholomew's Hospital. yeah, the last six years or so have really been taken up with both recovering from that and deciding what I was going to do with the experience I had being diagnosed and treated with anal cancer.

Naman Julka-Anderson (02:11)
Before you were diagnosed, did you know much about anal cancer? Or have heard of it?

Michael Anderson (02:14)
Oh nothing,

absolutely nothing. When you suggested that I might like to be interviewed today, I started to think about it and about that actual day that I was diagnosed and it was, I suppose for a lot of us, the diagnosis days really etched in your mind and mine was five o'clock New Year's Eve 2019 sitting in the oncologist's office.

And I was told I had something called anal cancer. Now I thought what she meant was I had bowel cancer, because I'd never heard of it before. So I sort of wandered back home, still thinking about it and wondering about it. And then over the next few weeks, while I was preparing for treatment, I did what everybody does, which is Google it, and really couldn't find out a lot about it apart from

what a ghastly disease it was and how few treatment options there were about it. So, yeah, I entered into treatment with zero knowledge about the disease and quickly discovered I wasn't the only one. I wasn't being ill-informed. The information and the knowledge just wasn't out there at all. So, no, it wasn't ⁓ a disease I knew about and it took me a long time to actually find out about it too.

Jo McNamara (03:28)
Michael, what symptoms did you have? What led you to go and have the investigations?

Michael Anderson (03:33)
Well, like I said, was 60. I'd just retired. I was not particularly active. So I had a haemorrhoid and you know, for a man of my age, that's not that uncommon an experience. I did what most of us do, which is stick a bit of cream on and put up with it

and then it got worse and it wasn't really until I looked back I realised how much I'd done to avoid confronting how badly it had got, you know, I started with putting toilet paper down my underwear because I was bleeding a lot and then I graduated onto stick on panty liners because I was bleeding so much. And I think it was by about November 2019 I thought this is just, I just had enough, I really had enough.

I went to see my GP. Now I know from others experience I had an unusual experience with my GP because my GP didn't say what I was expecting him to say which was here's a prescription go away. He actually said he wanted to look and I was really surprised really really surprised. So he examined me.

And I was again just expecting him to say right well you know here's prescription for something. But he didn't. He said that's not what I would be expecting to see if it was a haemorrhoid. And so while I was getting dressed and ready he was on the phone already to it was the Homerton Hospital in London. And by the time I was ready he said he'd arranged for me to go in there pick up some prep

so I could have a colonoscopy. So from there it all moved incredibly fast. But like I said, I know my experience is atypical. Because lot of the other people I now talk to who are living with anal cancer, that is not what happens. What happens is you repeatedly go back with symptoms which are dismissed as a haemorrhoid and dismissed as you're getting older because mainly it's a disease that's prevalent amongst older people,

an elder demographic. So yeah I was lucky because of that intervention that I was diagnosed at stage two. So you know an eminently treatable stage in anal cancer. But I know for a lot of people that's not their story at all.

Jo McNamara (05:51)
Michael, I know this sounds a silly question, but it's something that when we spoke to previous guests, we asked them about kind of awareness and body awareness. Did at any point you have a look at your anus to see what was going on?

Michael Anderson (06:06)
You know, it's a very difficult part for your body to have a look at. I, of course, again, this is about the hull of ointment. I knew it was there because when I was sharing, I could feel it. Then I graduated onto making sure I didn't feel it because I didn't want to know it was happening

not looking in the loo because I knew there was going to be blood there and I didn't want to see it. So there was a whole set of barriers I put on myself because I didn't want to confront the possibility that it could be more than a haemorrhoid.

I think because I had no prior knowledge of anal cancer, there wasn't a sort of like a trigger in my head going, right, you really need to do something about this. It was more, I don't want to confront what it might be. And you know, my first thought was haemorrhoid. My second thought was bowel cancer. Anal cancer just did not enter into the equation. But that whole self-examination issue is a real problem because you can't, you know, can try maneuvering around with a mirror

which I did after treatment when I was healing to see how I was doing. But it's really difficult. It's a really difficult thing to do. And you either need a clinician to look at it for you or a very close friend to look at it for you. Self-diagnosis is a difficult one with anal cancer. ⁓

Naman Julka-Anderson (07:23)
You said you were surprised that your GP looked. Can I ask why and is that the same experience from others that you've spoken to as well?

Michael Anderson (07:29)
It was, yeah, I was surprised initially because I just thought, you know, haemorrhoids, I'm over 60, that's the way it goes. But my experience since then running a support group for people with anal cancer is that GP simply don't have that knowledge. My GP afterwards, I went back for my cancer care review with after my diagnosis with the same GP. And he said to me that

he remembered a mention of anal cancer. It was about a 15 minute slot when he was doing his degree and that was about it. But it had really stuck in his head and I was the first person he'd ever seen with it. Now this is a busy

inner London GP practice with, goodness knows how many thousands of patients going through each week. And I was the first one he'd seen in about, I think he said it was about 10 years of practice. So yeah, was chance, absolute chance that I presented to the right person at the right time. And I know that simply is not the experience for a lot of people.

Jo McNamara (08:38)
So tell us Michael, once you had the diagnosis, what then was the treatment plan?

Michael Anderson (08:44)
Okay, well I was really lucky. My treatment was at St Bartholomew's Hospital

and my oncologist at the very first treatment planning meeting told me about a clinical trial that was going on which it was the PLATO Act IV trial and it was rather than a trial of a new drug it was a trial of a new approach to anal cancer so the traditional it's the Norman Nigro protocol which was established in the 1970s in the United

States and there's little change since the 1970s. So that's five to six weeks of daily radiotherapy and chemotherapy all the way through, normally oral chemotherapy but you know that depends on staging.

The idea of PLATO ACT IV was would lower dose radiotherapy over a slightly shorter period and lower dose chemotherapy result in the same outcomes? Because the traditional route, sorry, the traditional protocol, the radiotherapy protocol is really challenging. By the end of it, are inevitably, because of where the tumor is situated, there's a lot of

damage around the site as well. For me, yeah of course that happened to me but the the long-term impacts were far far more manageable than a

people going through more traditional therapy. My recovery was a lot faster than other people I've talked to and my outcome has been just as good. I'm now over five years out and I my last checkup. I think it was just before I spoke to you two in Leeds in the summer. I'd had my final checkup when I was told I was five years down and I was clear. So it was just wonderful being able to be able to take part in a clinical trial because of course it's

great to know that that might now be established as a regular protocol but also selfishly I came out of it far less scathed if that's a word than people do going through the traditional protocol so that that conversation in my oncologist's office was a real life changer for me.

Naman Julka-Anderson (10:59)
Is there anything you did maybe holistically during your treatment that really worked and it might help other people who are going through the same treatment?

Michael Anderson (11:06)
That was the biggest problem was finding any guidance at all about what was happening to me. After I was diagnosed, like I said, I Google searched, I could find very little information. Most of it was clinical, so it was written for clinicians and of course, as a patient, there was a lot I couldn't understand. But I didn't find any sort of

support in the UK that was about my cancer and about that would help with my experience of treatment and eventually I landed on a support group in the USA where I think anal cancer is a far higher profile than here in the UK and it was a support group there that I joined which meant sitting up until some stupid hour of the evening so I could join in the online conversations.

And it was there that I was messaged by a wonderful person called Sandra Greenwood, who I discovered was also in the UK and was just, I don't think frustrating is the word. She was really angry that nothing like that was available in the UK. And she just said, should we just have a go at doing something?

And Sandra set up a Facebook group. opened it. We sat there thinking, yeah, we'll get about two people, three people. As a few days ago, we're optimally 400 members. All of them are people living with anal cancer in the UK.

And we've all got more or less the same story that we get diagnosed and we have no idea what that means to us and what it means for our long term future, for our recovery, for what our lives are going to be like afterwards. We don't give medical advice. We're just other people living with the same disease. But for a lot of people, they land on our site, apply to join. And the first thing they say is, I'm just

happy to find somebody who can say me too and it's a huge thing.

Jo McNamara (12:58)
Why do you think that community support is so important, Michael?

Michael Anderson (13:02)
Well, this sounds a bit odd, but I had the privilege, that is the wrong word, of being diagnosed with a second cancer in 2024. So I was diagnosed with small cell lung cancer then. And right from the go, I went in for my first treatment and there were three other people

all sitting there, all waiting for the same treatment. And you form this sort of grim camaraderie. So the four of us were there for our twice daily radiotherapy, every day, every weekday. And you form, I don't know, it's sort of this informal support group. We'd see each other on...

I'd ring up going, don't think I can do it tomorrow. And they'd be like, yeah, you better, otherwise we'll come around and drag you around to the radiotherapy suite. And that...

That sort of personal support really kept me going. It kept me going through the grimmest days of treatment, especially chemotherapy, which was incredibly challenging. And having three other people who were having the same experience of me and were saying, come on, we're going to do it, be there tomorrow, was incredible. And it got me through it. And you don't have that with anal cancer.

One example I gave was very early when I was sitting there. The radiotherapy suite at Bart's is enormous. The waiting area is huge.

Sitting there and you always have that conversation with somebody sitting opposite you which turns into what are here for? And the guy opposite me said I'm here for treatment for prostate cancer and what are you here for? And I said I'm here for treatment for anal cancer and he changed the subject and very quickly you learn to be careful about who you share that information with because they were either hideously embarrassed or they

I

simply didn't know what to say. It's not just in those settings, it's outside when you say to friends what your illness is.

And there's this real pause about what does that mean and what do I say. I've never had that when I said to friends I've been diagnosed with lung cancer. There was immediately that's like the warm hug thing with anal cancer. I'm really awkward being in the same room. Not out of any sense of, you know, there's something wrong, but I just do not know because I don't know what the cancer is. I don't know what to say. that, you know, that's one of the...

inspirations for me about continuing to do work around anal cancer is that if somebody says it to a friend or a relative they'll go yeah I've heard of that disease.

And I think just that would be a triumph. I really do.

Naman Julka-Anderson (15:33)
What did you find was the biggest challenge doing a radiotherapy?

Michael Anderson (15:36)
For me it was like a lot of people who have that sort of regular radiotherapy over a matter of weeks. The first week Friday you walk out and you think that was easy. That was so easy. A bit sore but absolutely fine. By week four.

It really is very, very difficult. You are burnt and you do become afraid of using the loo because of the pain you feel. As I said, there was no one else in the waiting room I could say, what are you doing? How are you coping with it? And it was the radiotherapy team

because they were the people who saw me every single day. They were the people who knew my name. They were the people who knew my birthday. And they were the people who knew by about the end of week two how I would probably be feeling. And they didn't wait for me to ask. said, I know this sounds a bit, it sounds like it wouldn't be important, but they said, how are you? And they didn't say, how was your cancer?

So was about me and my wellbeing and they were really interested in doing something to help.

They helped by not waiting until I had a problem. They helped by saying these are the things that might be coming up in the next few weeks and this is what we can do to help you. And they gave me amazing advice and gave me access to stuff I didn't know could have access to like lidocaine gel and things like that. yeah and of course the rest of the team fantastic and my CNS was wonderful but

they were the people I saw every single day and they were the people who knew when I was having a difficult time and they were the people who did something about it without even being asked. So yeah, they were the ones that kept me coming back. They really were.

Jo McNamara (17:21)
And it's interesting you use that phrase of coming back because a lot of radiotherapy regimes are daily apart from the weekends. And for us as therapeutic radiographers, radiation therapists, it can be quite kind of, yeah, well, it's just coming to the hospital every single day. But actually, you know, the way that you phrased it really does highlight how that can in itself be quite traumatic coming every single day, especially when you are on a regime that is for weeks.

Michael Anderson (17:28)
Yeah.

yeah.

Jo McNamara (17:51)
weeks.

Michael Anderson (17:51)
Yeah,

I mean your life is on hold for that period and that's why it sounds like an exaggeration but they did become a bit of an extension of my family because I saw them every day and they were more or less the same group of three or four people. You know the faces would change every now and then they'd rotate around a bit they allowed the odd day off.

But they were more or less for almost six weeks the same people I saw and they were the same people who moved me around on the couch and said, don't try to help. know, like they say all the time as you try and shuffle around. were the people who touched me, touched my body in ways that, know, only people who were very, very intimate with me normally touch me. And they did it without any sense of embarrassment. And they did it in a way that made me feel okay about myself

and unjudged and

that I could say absolutely anything to. And I did. You know, there were some days I came in in utter despair and said that I don't know if I can go through with this. And there'd be a few minutes chat with me in my hospital gown in the changing room about how I could get through it and I could do it. And that walk through onto the couch and the hand holding while my tattoos were lined up.

And I don't think, maybe you do, but I really don't think you people understand what a simple touch, a simple hand holding, the difference that can make between going through with treatment and saying I've just had enough.

Naman Julka-Anderson (19:25)
Thank you for sharing Michael. Yeah, it sounds very touching, literally.

With your support group, Michael, so with Bottom Line and everything you do, what has come up around conversations with stigma and sharing a diagnosis like this with their friends and family?

Michael Anderson (19:46)
It's one of the hardest things. In advance of a conference I went to in the summer last year, did a simple question about who you shared your diagnosis with and how you shared it. And I asked our members of the support group. And

a lot came back saying that they had either shared their diagnosis as bowel cancer rather than anal cancer. In some cases they shared it as bowel cancer with family members and not told family members they had anal cancer.

There are multiple stigmas around anal cancer. For a start, this is where in the body it is. And it's somewhere that people don't want to talk about. You don't have casual conversations on the boss about it, you know. And there hasn't been that person to talk about it like Deborah James did around bowel cancer

where she normalised conversations about bowel cancer, that hasn't happened. So it's still a very difficult path for your body to talk about. But then there's the added stuff around HPV and around the majority of anal cancer cases, anal cancer diagnosis being associated with HPV infection and HPV being largely a sexually transmitted virus. So, you know, and we know that.

Almost all sexually active adults at some point have an HPV infection and the vast majority of course don't go on to have any further complications for it. But just that it is normally sexually transmitted. And finally that the groups most affected by it are men who have sex with men and people who are HIV positive. So you just keep piling on these layers

of stuff that people have to get through and when they say I've got anal cancer and somebody goes off and googles it and sees all this other stuff and suddenly you're carrying that all on your back and I can completely understand

people saying I've got anal cancer and I have been tempted to say that in situations where I'm not sure what the reaction might be. So I fully understand it. But I also fully understand that the only way we're going to overcome the stigma is by people saying it. you know that people like me will appear on broadcasts like yours and say I am living with anal cancer

and it's going to take a lot of trying to get that message out. you know, there's the, what I think is a world first with the Aiden Cancer Awareness event in Belfast

which is about getting those words out. I tried to do that. I was asked to go on stand-up to cancer in December on channel 4. I was all set to have my little interview and say, I'm living with anal cancer. Then they said this bloke called King Charles had made a video about his own cancer. So was bumped to being on at the beginning when they said, I'm rejoined by Michael. Hello. And that was the end of my broadcast. But I'll get there. I'm determined to

Get there.

Jo McNamara (22:47)
If you're be bumped off by anyone Michael, at least it's the king isn't it?

Michael Anderson (22:49)
Yeah, yeah,

I suppose he's got more of a draw than Michael Anderson you know.

Jo McNamara (22:55)
We would dispute that, we would dispute that. So Michael, ⁓ in terms of kind of the treatment pathway then, did you experience any side effects and also thinking about, you know, living with and beyond cancer, are you experiencing any late effects now?

Michael Anderson (22:57)
Hahaha!

Yeah, during the treatment itself, everyone's different and I was stage two. And of course, other people's treatment journey is going to be different from mine. But for me, chemotherapy was really easy. I got through that very well indeed. I had brilliant anti-nausea medication. Radiotherapy was tough and it really was

at its hardest after treatment ended. The team told me it just keeps on working your body. It's not like you turn off the machine, it stops, it's there and it keeps working. And they did warn me that for a few weeks afterwards it would be quite difficult and they gave me bags of medication to take home to help with that. Lots of brilliant advice and especially do not get constipated was their number one advice

which was exactly the right advice to give. For me though, the late effects started to kick in probably about a year afterwards and there's still something I'm living with now. you know, it'll, I know that the lining of my anus is quite fragile because of the treatment. So I can bleed now and then, which is a bit scary, but because it was explained to me in advance that that could happen, it's not as scary as maybe as it would be.

But now I think again because I took part in a clinical trial of a different approach to treatment, the long-term impacts on me have been far milder than perhaps it would be for others going down the traditional treatment route. And again from the support group, I know some people are confronting very, very difficult

long-term impacts. But I think even me having a different approach to treatment, there are impacts that all of us have, especially around sex and intimacy. It can be a really, really difficult thing and a difficult thing for people to talk about. Because like I said, you're talking about anal cancer, you're talking about HPV and now you're talking about I want to get back to having sex.

For a lot of women, there's the long-term impact of things like vaginal stenosis, which does make resuming penetrative sex really difficult for them. For men who have sex with men, there's the impact of anal stenosis. And I think there needs to be more recognition of how

interventions could really help with that because I think when I suffered from anal stenosis and when I tried to get help with that there was a I'm not saying embarrassment but there was a feeling that maybe it was something no I'm 66 maybe it was something that I didn't really have to bother myself with anymore you know that thing about older people are not sexual people which is absolute nonsense of course

so looking back I really wish there'd been more work done with me before the end of treatment warning me that this is what might happen and this is what could be put in place to help me because I didn't really have to find my own way and the clinician at the Homerton Hospital Tamsin was astonishing with the help she tried to give me.

But the help she tried to give me was very limited with what was available on the NHS. And she did point me at other routes where I could maybe get help, but that was out of your own pocket. The NHS approach to is pretty basic, I've got to say.

The dilators they give you are absolutely awful. They look like you could buy them from B&Q to knock nails in. They're just awful. if this thing is supposed to make you feel ready for sex again, they're the least sexual things you've ever seen in your life. one of my big hopes is that with the recognition of the impact anal cancer has on people, jointly the recognition

that the impact it has on sex and intimacy because it can be immense, absolutely immense. And I think as well as the uncertainty about restarting your sex life, the fear of it is very real too about will I be damaged? And it's question I think a ⁓ lot of us have asked but very few of us have had a definitive answer.

I really want to see more around our well-being as the whole person after treatment ends.

Naman Julka-Anderson (27:25)
How have you found people have broached the conversation with sex and intimacy with their partner after they've been treated? Just from the support group and stuff, I'm just quite curious.

Michael Anderson (27:32)
Right I'm

just thinking of one that I was reading just at the weekend where she had decided off six months that she would quite like to start having a sex life again with her partner and they started and it was appalling but she didn't tell him

and she put up with it because she thought she was doing the right thing. She thought this was about getting back into having a sex life was putting up with the fact that it was appalling for a lot of other people. This is awful but it's that fear that when you broach it there's this unsaid thing about you're not dead.

Aren't you just grateful for that? That you're still alive. This is like some little bonus thing having a sex life that really you don't... Come on then.

I think for most of people in the support group they don't talk about it. They just don't ask about it. And a lot of the discussions we have in the support group, people say this is what I did. This is the shop I went to. This is the lubricant I bought. And I keep, you know, when I see that I keep thinking why?

Aren't those discussions happening in your clinicians office? And why aren't they giving you this advice rather than a group of people like us giving recommendations about which online shop you can go to?

Jo McNamara (28:48)
I

I could probably answer that as to maybe why it doesn't happen is because of the wide demographic of people that radiation therapists, radiation oncologists come across and some will want to talk about sex and intimacy, some won't. Also about the lack of knowledge. You know, I can hold my hands up and say my education around sex and intimacy and cancer through 20 odd years was really limited. It's only since doing Rad Chat that actually I've

Michael Anderson (29:12)
Mm-hmm. Yeah.

Jo McNamara (29:16)
learn so much about sex and intimacy in oncology and how to maybe broach the subject sensitively and personalise to who it is that we're talking to but there's just not a lot out there and I think it's so important that people listening who maybe are in the field and are healthcare professionals really listen to what you've said Michael around kind of just asking the question or if you don't know and you're not educated find out

Michael Anderson (29:18)
Yeah.

with this.

Yeah, that's exactly

it Jo. know, when you go in for your oncology appointments, you go through a set of questions around about, understand to me they're focused on your cancer. and then things like, your bowel movements, okay, what I'd really love is, have...

question around is there stuff in your life you'd like to talk about for them to make the offer rather than you sitting there thinking have I got the guts to say this is really bothering me and I'm getting really upset about it because you take a risk when you do that and you know there are some very simple things that can be done to make you feel more comfortable with the conversation. I've found

if somebody at the hospital was wearing a rainbow lanyard I thought yeah I can probably say to them yeah at the weekend my husband said

and not worry about what the reaction would be. So there's a combination of that and then coming forward with the question. But I agree with you Jo, it's not just about asking a blanket question, it's about looking at the person in front of you and thinking how you're going to ask that question. There are some people for whom the sort of question I might welcome could be utterly inappropriate and it's a really fine balancing act and you're only going to find that out if through

through the exposure you and Naman have had in the series of interviews and podcasts about the wide variety of deeds people have. And I just think for a lot of people in clinical settings, they're just running to keep up. And the idea of this extra stuff that will make treatment even better is, I'd love to do that, but I've got a clinic in five minutes. I've just got to run for it. How we get around that, I really don't know.

I know, but I'd love to see the day when that just becomes an ordinary part of the conversation.

Jo McNamara (31:33)
Yeah.

I also think as well when you're going through treatment, as you suggested, it's just about, I've just got to turn up and maybe sex and intimacy is the last thing on your mind. But then when you resume life, I was almost going to say normal life, it's never normal life after cancer, is it? But when you start to kind of, your side effects start to ease somewhat and maybe late effects develop, you then haven't got that security blanket of seeing therapeutic radiographers every day and actually that's

Michael Anderson (31:42)
Yes.

Okay.

Exactly.

Jo McNamara (32:03)
the time when maybe you do need that support to go is this normal, I've attempted to have sex and actually I can't or you know I'm suffering psychologically from everything I've been through and that's then impacting on my sex and relationship.

Michael Anderson (32:15)
you

Yeah.

Well, it's the ring the bell thing, isn't it? You see it all the time. Somebody joyously ringing the bell on their last day of treatment. didn't, there wasn't a bell where I was. And this assumption that that's the end. And for a lot of us, that is the start. Because that day

can feel like you're going off the end off off a cliff it really can for for six weeks my life was timetabled i knew where i had to be i knew who who i had to see i knew i got weekends off but it was i had six weeks of my life being i was looked after by somebody else i really didn't have to think a lot that day i walked out i went home i sat down and i realised i was on my own

and it's the living with cancer interventions that are missing from our treatment. And it's that three to six month checkup where the focus is purely on

clinically what's happening to you, but not psychologically and socially what's happening to you. But again, it's just understandable. When I think about going to clinic for my checkups and I walk in from a waiting room with another 50 people behind me all waiting to go in to see someone, I can fully understand why the oncologist is just going to get through it. But for some of us,

it's the psychosocial impacts that are as important or more important than the clinical, the physical impacts. And I think room has to be given for that. And the only way that's going to happen is if the questions are asked.

Naman Julka-Anderson (33:56)
I think this is where allied health professionals and nursing colleagues in kind of advanced practice or consultant roles really helps because

our whole degree is in oncology. And while maybe Jo and I didn't learn about this, obviously now it's very much in the curriculum. And obviously people can use Rad Chat to try and talk about it. I think we've talked about sex and intimacy a lot in our nearly 500 episodes. But I think for me, when I was trained to be a on-treatment review radiographer, we had a pro forma. So it was, you know, past medical history, pain, and sex and intimacy was never in there at the beginning. But then eventually I added it in. But that doesn't mean I was

Michael Anderson (34:25)
Yeah.

Naman Julka-Anderson (34:29)
great at talking about sex, I was still very timid and scared to do it and actually when I did open up the conversation a lot of people would then ask me about specific things and I got very shy because it's not something I talk about openly but I think now I'm very confident to do it and as Jo said it is because of Rad Chat, the people we've had on and maybe the safety of knowing that actually what we talk about on here is going to impact and help other people think actually maybe I could also ask that question in private.

Michael Anderson (34:31)
Yeah.

Yeah.

Mm-hmm.

Naman Julka-Anderson (34:55)
Obviously it doesn't mean in a waiting room you go and ask someone, have you got back to having sex? It might be one to one actually, have you considered what other forms of intimacy might help broach the topic about sex? What other aids are there? I think going back to the topic about what website, so in my role at Macmillan, we obviously did some work with Love Honey and actually we got some negativity because there was nursing outfits and stuff on the website so people thought, well, is Macmillan endorsing cosplay and stuff like that?

Michael Anderson (35:01)
Yeah.

you

Naman Julka-Anderson (35:22)
That's not what it is, it's about broaching the conversation about sex and intimacy. actually, even if someone is into that, that's still their decision, it doesn't mean that's what we're trying to talk about. But yeah, that's the other level of it, it's so difficult then to try and do it as a campaign, because there's always that negativity in a different angle.

Michael Anderson (35:31)
well

Yeah.

You really reminded me there of a conversation I had last year with somebody on the support group and he said he eventually summoned up the guys to say during his appointment I'm really having problems with sex and they gave him a leaflet and I said was it helpful and he said no because it wasn't about the sort of sex I have.

You can't make assumptions about what sort of sex life people want to go back to and you can only find that out if you're open and willing to listen and willing to be held up to a ridicule because the website's got nurses uniforms on it. None of us can make assumptions about the person who's sitting in front of us and what their life is like once they walk out to the office. We just can't

you're absolutely right now, those conversations are difficult for the patient but they're also incredibly difficult for the clinical staff too. And I don't think we've got to underestimate that and assume that the clinical staff are just going to go, hey, tell me everything about your sex life and let's get it back together. you know, sitting in office, we're two human beings talking to each other with all of those things going on inside of us.

Yeah, it's about how we normalise it. like you said, during your 500 or so podcasts and interviews, this is coming up again and again, which just indicates how important an issue it is.

Naman Julka-Anderson (36:54)
L.A.

you

Jo McNamara (37:07)
So Michael, you've talked a little bit about healthcare professionals giving support, but you also run the charity. Can you tell us a little bit about that, please?

Michael Anderson (37:15)
Yeah, so like I said, it was originally set up at the behest of Sandra Greenwood who just said, I'm really sick if I'm just staying up to 11 o'clock at night to get a support group in the USA. So that went really well, but after a while we realised we wanted to do more than just give people an arena where they could discuss things as important as that is

because the things that were being raised were things we wanted to do something about. And it's very difficult to do that unless you are a charity. So we morphed into a charity towards the end of 2024. I became ill with lung cancer. So things were sort of on hold a bit. But our main aim

right now we're not incredibly ambitious. Our first ambition is to just get the message out that anal cancer exists. Now sounds like a very simple thing to want to do but finding the avenues and the outlets for that information just proves really hard because yeah, anal cancer is one of those fluffy things that people want to talk about on Good Morning

the telly they don't want me sitting there talking about problems with my anus while people are having their corn flakes it's just really hard to get in there

Naman Julka-Anderson (38:27)
You say that Michael, but on those

shows they talk about how to have sex in your older age and stuff and menopause, so I don't know. Maybe you need to start harassing them and trying to get on there.

Michael Anderson (38:35)
If you've

got a contact, I don't mind which breakfast TV programme it is, but I'll get on there. The world of getting the... You're in a bit of a queue to try and get on stuff like that. And people, quite understandably, the big four, get the coverage. And that is right, because that's what affects the most people.

Rare cancers and anal cancers are rare cancer account for around half of the diagnosis of all cancers in the UK. And we're just not given a fair crack at the whip really as far as getting air time and getting information out. So that's why I was really excited about the Belfast Anal Cancer Awareness Event because just getting a group of people in

to talk about it and a group of people who then can go away and take that message with them. And it's exciting for me because again I was thinking about this last night. It'll be the in the six years since I was diagnosed I've only met three people with anal cancer face to face. I'll be in a room with other people with anal cancer and we'll be able to talk about stuff that we all understand. I don't think

I think maybe people can't understand quite what a huge thing that is for me. To be able to just sit with someone and they go, yeah, I know, and this is what happened to me. Rather than it happening online. The first person I met was only back in Leeds in the summer. That was the very first person I met face to face and that was after five years of diagnosis.

That's pretty sad, I think, that I haven't been able to have that interaction with another person with anal cancer. But the Belfast event is what I think is going to start increasing opportunities for that to happen.

Naman Julka-Anderson (40:18)
Yeah, and obviously we're very fortunate to be supported to be able to do that. Jo and I always have wonderful ideas, but it's actually being pulled off. then hopefully in 2027, rolling it out even further. And then I think, yeah, I think that's how it starts.

Michael Anderson (40:28)
Nationwide, nationwide. I

think it's great as well that it's happening in Belfast because in the UK we're terribly London centric and everything else has to happen in London. Getting it out to Belfast is brilliant, absolutely brilliant. And when I publicised it on the Bottom Line Help Group, there was real excitement by Bottom Line members in Northern Ireland. And I know several of them have signed up

and a couple who live in Dublin really want to make the trip up there for it. So I think you can overestimate just what an impact this is going to make on people in a part of our country that is often overlooked. yeah, it's brilliant event.

Naman Julka-Anderson (41:11)
Thank you. And that was part of the thinking was obviously around late effects supporting the team there. So Dr. Catherine Hanna, Sarah O'Hare and Alison Irwin who are in the team there. yeah, and obviously Rare Cancers are in the cancer plan now. So lots to hopefully look forward to to helping address these kind of issues that you've mentioned.

Michael Anderson (41:16)
Yeah.

Yeah.

Naman Julka-Anderson (41:35)
So Michael, coming to the end of the episode, we always like to end with top tips. You have given quite a few bits throughout the episode, but what else have you got for our listeners before we close?

Michael Anderson (41:43)
⁓ Top tips well around I suppose the the first top tip is around diagnosis. Now I think like I said in beginning a lot of us put with haemorrhoids. Don't.

I don't. I think your GP would far rather see a hundred no problem haemorrhoids than miss that one case of anal cancer. Honestly they would and that's exactly what my GP told me. The second thing would be if you are diagnosed with anal cancer

you've got a team of people at your hospital who are there to help. That is what they want to do. And do not be embarrassed about asking anything. They might know, but they can usually find somebody who does know. The third thing is...

Don't go through it alone. We're there as Bottomline. There are other support groups out there, but do not go through it alone because it eats you and you may think you've got through treatment and you've come out the unknown well. It comes back to hit you further down the line and the only way to do that is to share your experience with other people. We're here for you to share with if you want. There are other...

organisations you can do it to but please do not try and get through this by yourself.

Jo McNamara (43:02)
So a huge thank you again to I guess Michael Anderson for talking about his experience of anal cancer and Bottomline charity that he set up. So thank you all for listening to Rad Chat with myself, Jo McNamara and Naman Julka-Anderson. Please do go and check out the series all on anal cancer. Thank you very much.

Michael Anderson (43:19)
Bye.

Jo McNamara Rad Chat Host (43:19)
So what do you do now? Well you can use this episode as part of our free continual professional development accredited content which offers flexible learning that fits your busy schedule. Just check out the show notes for the reflective questions, links to literature and resources and link to the completed form to receive your accredited certificate.

Naman Julka-Anderson (43:38)
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Jo McNamara Rad Chat Host (43:48)
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Naman Julka-Anderson (44:01)
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Jo McNamara Rad Chat Host (44:16)
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