How to Empower... Working with Cancer
Series 4 Episode 5
In this inspiring episode of the How to Empower podcast series, host Katy Bennett engages in a crucial conversation about the often-overlooked challenges of working with cancer. Joining the discussion are speakers Barbara Wilson, Founder and Director of Working with Cancer, a social enterprise dedicated to supporting individuals affected by cancer in their return to the workforce, and Martin Groom, Director at PwC. Together, they unpack the unique journeys of those living with cancer, exploring the hurdles and misconceptions. This episode highlights the struggles and emphasises the importance of creating a workplace culture that fosters understanding, support, and recovery. Tune in to discover how Working with Cancer is making a difference and how employers can contribute to a more inclusive and compassionate work environment.
Transcript
Katy Bennett: Hello and welcome to another episode of the How to Empower Podcast series. Today we'll be discussing the topic of working with cancer, shedding light on the struggles faced by cancer patients and what employers and peers can do to make it easier to talk about. Today I'm joined by Barbara Wilson, founder and director of Working with Cancer. Hi Barbara.
Barbara Wilson: Hello.
Katy Bennett: And Martin Groom, director in the Workforce team at PwC. Hi Martin.
Martin Groom: Hello.
Katy Bennett: Before delving into the questions I wanted to set the scene for listeners, sharing some of the startling statistics behind cancer. In our lifetimes one in two of us will be diagnosed with cancer. Fewer than two thirds of employees diagnosed with cancer return to work or are still working a year after getting a diagnosis. Job loss is experienced by up to 53% of people living with cancer. And unemployment can be 1.4 times higher than for people who do not have cancer. In light of this our aim today is to shed more light on the realities faced by so many people, challenge common misconceptions and encourage more open conversations. So Barbara, if I could start with you, could you share your experiences with us?
Barbara Wilson: Okay well I was diagnosed with cancer in 2005, with breast cancer. I had three surgeries, chemotherapy and radiotherapy. I was working then as an HR Director in the city for a large investment management company. I found it very difficult to manage my own return to work and that showed me how difficult it was in general for people to manage work and cancer. So that led me to setting up the company in 2014 when allegedly I'd already retired. And we work throughout the UK and Europe supporting anyone affected by cancer at any stage to return to work, manage work or find work.
Katy Bennett: Brilliant. Thank you Barbara. And Martin could you share a bit about your story please?
Martin Groom: Sure. So I was diagnosed with advanced prostate cancer in October ‘22 and at that point went through I guess the journey that a lot of men go through. And I guess that's a topic that it would be good for us to talk a bit about today. Because I think us fellas take a different approach to this disease and these conditions. And I think we need to start kind of opening the doors and getting people to think more about what they can do for themselves and to try and get ahead of prevention and early treatment. A couple of things I guess that stand out for me, probably the most challenging time was in between being told there's something seriously wrong with you and then being told this is what's wrong with you and here's the plan and this is what we're going to do and this is what you can expect. So that was a period for me of probably about two months. And I found that, of the whole journey, probably the most difficult. And I think it's worth us exploring at some stage what support can be provided and what people should be reaching out to get help with. After that it was possible for me, fortunately thanks to the support and help of PwC, to be able to step back from work for a while and look after myself and really maximise the opportunity to get better.
Katy Bennett: Thank you, Martin and I'll stay with you if that's okay. Just would be really interesting to hear, were there any signs in your journey that helped you early on, anything you kind of say to listeners to keep an eye out for or you noticed?
Martin Groom: Again with prostate cancer in particular men of a certain age start to notice some differences. And I think we need to be open to that and we need to get men to look out for it. Everything I've learned suggests really once over the age of 45 and certainly over the age of 50, you should be looking out for, you know, how many times you get up during the night and so forth. Key thing if you have the opportunity to have a company medical you should take it and not shy away from it. And second key thing if you are over 50 and you’re male, you must absolutely, you must get a PSA test.
Katy Bennett: And Barbara obviously you've got your own experience but you work with many people with cancer. Any kind of tips you'd like to add on?
Barbara Wilson: Well I think it's quite interesting because for example with my experience I didn't have any clue that I was ill at all until I'd had a mammogram which I actually had commissioned myself because I knew I had, as they described it, lumpy breasts. And I had a lot of cancer in my family. What I would say is I absolutely agree with Martin. It's important to manage your health. So if screening is offered, take it up. If like me there's a lot of cancer in your family, push for checks. If you're somebody who has the benefit of private health care make sure you use it. And I think the other thing is to self advocate. So if you feel there's a change in your body, a pain or an ache that you just can't explain and your GP, bless them, says ‘oh well go see a physio’, there was something on the radio about this yesterday, if you still feel unwell or feel that's not right, self advocate. Take responsibility for your own health because no one else will.
Katy Bennett: Thank you. And presumably for those you know I know many people don't want to go and ask. They're worried and they're scared what the news might be. But presumably the first step really does need to be to go and get that help and to ask those questions.
Barbara Wilson: Yeah it is scary. It is really scary. I had relatives, you know when I was a little girl, one relative who had breast cancer which probably could have been dealt with very well. And she was so frightened she just let it go and she died. And I think fear is terribly debilitating. It doesn't actually solve anything. And the worry can be debilitating too. The worry, the anxiety, don't let that ruin your life. Find out what's happening and get it fixed. Prostate cancer, breast cancer, many cancers these days can be managed very well. They can be treated very well. The survival rates are increasing all the time.
Katy Bennett: And I guess this leads onto the next thing I want to talk about which you know historically even now lots of people don't really want to talk about cancer. And presumably that can feed the fear and feed those barriers. But how can we have more open conversations about this?
Barbara Wilson: In my experience it's about the organisation setting the right culture and making it okay to talk about cancer in the workplace. I think the City has particular problems. The City of London as it were. People are concerned about their careers. They don't want to be seen as damaged. I think Martin will comment on this, I think men are particularly prone to that. The only way to deal with that is by making it okay to talk about these things. There are some cultures where again it's very difficult and there's a real stigma. Not talking about things doesn't actually solve the issue. And many companies will lose very talented people because they have made it difficult for their employees, if not impossible, to talk about cancer openly and honestly.
Martin Groom: Yeah I couldn't agree more, Barbara. For everyone to try to beat this condition we've got to do three things in my view. The first is at the very outset, get that medical, get that help, seek advice. Be as open as you can to find out what's wrong with me and not hide away, as you've already said. The second is to speak openly about it. You know, the main reason I'm here today is because if we don't start speaking about this and having much wider conversations and being transparent and honest and not embarrassed then more people are going to get sick and more people are going to die. Sadly the day that I got the news that I'm pretty much clear now I met a very good friend who announced to me that he was about to go off for four or five months because he has colon cancer. We think they've caught it but no one would ever have known. He wouldn't have known. He just happened to be talking to some people who talked about symptoms and quietly went off to his GP, got a bit of a check done. Suddenly he was in front of a consultant and thank goodness, I'm going to use extreme language, he's saved. He's going to be okay. But you know, a bit like my case, another few weeks and that's what it can be sometimes just a few weeks and then it's either too late or it's a damn sight more difficult to treat. And a lot less straightforward.
Katy Bennett: Yeah.
Martin Groom: The third thing then is when you're going through this and again I'm probably addressing the male population again, talk to people about how you are and what's going on and what treatment you're getting and how you're feeling, and talk to friends and talk to relatives. In my case I talked to anybody that would stand still. Because I just felt it was really important for people to know. I had a couple of colleagues in the workplace say to me it's really good that you're being quite open about this because you know there's 300 fellas sitting around this floor. And I'm sure very few of them will have thought about this. So you know to become a bit of an advocate for diagnosis and treatment and openness and honesty is really important to me.
Katy Bennett: Well thank you and I'm glad to hear that you are well. It's really good to hear. I guess you touched on that, Martin, some of the barriers that people face and experience when they're, you know, living with cancer and trying to get the right support for that. Barbara in your experience what do you think those key barriers that you see time and time and again are?
Barbara Wilson: Yeah there are lots. I mean one of the issues is that there are over 200 different cancers and everyone's experience of cancer is very different. So, for example, there are many different forms of breast cancer. But even if somebody has the same form of breast cancer as me and the same treatment, because of our different physiology we may have very different reactions. So one of the barriers is the assumptions and expectations that people make of themselves and others. So for example you know I have clients where a manager will say ‘well I know about cancer because my mum had that’ or ‘my dad had that’. But we're all different. So assumptions about what somebody can do or can't do get in the way. One of the assumptions is, is that once treatment’s finished it's done. Okay so you're now cured. Or potentially if you're not cured you're going to die. When actually, returning to work, managing your life after cancer, is a process. It's not an event. Recovery from cancer is not linear. It's a roller coaster. There are good days and bad days. There are good months and bad months. And what happens is typically, as Martin may know, the side effects of some of the medication can be debilitating. So, somebody may return to work not feeling too bad not really starting their medication yet and they have no idea what side effects are going to impact them. Which may be cognitive dysfunction, fatigue, which we can talk about for ages, if you're a woman you may suddenly experience severe menopausal symptoms. All those things will affect your ability to work. So you go back to work feeling pretty good. Suddenly the medication kicks in. You feel terrible. You lose confidence in yourself, your boss loses confidence in yourself. Or it maybe you've come back to work for several weeks and you've been doing well. Suddenly you're not so good, you lose confidence. Should I tell my boss? Should I tell my family? I don't want to give them bad news. Maybe the cancer’s come back. So all of those things: lack of knowledge, lack of awareness about cancer, managing uncertainty about your wellness, your situation, your career, all of those things hinder conversations. It's very tough. So if you think of the classic iceberg analogy, active treatment and finishing active treatment is just the tip of that iceberg. There's an awful lot that follows after cancer treatment and it's important that people understand that. And once you understand it you can manage it and work with it effectively.
Katy Bennett: Thank you. And Martin I could see you nodding then and you know I know we spoke a bit before this about some of the misconceptions about what cancer is and what living with cancer’s like. Would really love to hear some more of your thoughts.
Martin Groom: Yeah if I hark back to what Barbara has just said. I kind of wander around telling people, I've consolidated it. Fear, and Barbara has already said fear, and that's massive for everybody, even if they are the biggest, bravest soul walking this planet. Embarrassment. And we can't get away from embarrassment, especially in men, especially when we're talking prostate or colon or anything down there. It's just all a bit difficult. And finally I think there's a pride thing. The pride thing for men is about 'well I'm the big brave strong protector and therefore my pride is damaged if actually I'm suddenly seen to have a weakness.’ For women, who are often actually very much more stoic than men, the pride thing is that ‘I've got to carry on for my family, for the kids, for the relationship and I can't be seen to be weak.’ It is all absolute nonsense because at the end of the day nothing matters more than your health, your well being and getting through this and trying to get back to, I was going to say normal. Let's say a new normal. Because I think we all agree on that. What happens during the cancer? I mean I can only give you my personal reflection.
Katy Bennett: Sure
Martin Groom: Fatigue is something that I have become completely fascinated with because I didn't understand what fatigue really was. People said to me you'll get very tired. Forget that. You know, I've made people laugh because I have got halfway through mowing the lawn and had to literally stop because I couldn't push the lawn mower anymore. I've had to sit down on the wall, both whilst mowing the lawn but also whilst trying to walk the dog, sit down on a neighbour's wall and I can't get home. And that has felt, fortunately I'm the kind of person I could smile about it and even laugh about it and kind of go I understand what's going on. It's okay. A lot of people wouldn't find that. A lot of people I think would be mortified by it. Fatigue, it’s like you've been completely unplugged. It's a complete lack of power, energy going to the battery. And most people I believe that have cancer treatment, because it's the treatment that at the end of the day causes it, will suffer from that. Barbara talks very fondly about brain fog. That has happened. I've gone again to walk the dog and forgotten exactly where I was going. I've gone to drive the car and had to just stop and take a moment and go oh yes I know where I'm going now. You've got no control over any of this. And then the final one obviously for me as a man which was difficult but all I could do was smile about is what I describe as crying over my pizza. And that's exactly what happened: Sunday evening, sitting around with the family, all very happy, all having a conversation and suddenly the tears start. Because if it's a hormone treatment based plan it does have some very strange effects on your emotions. And again as a man you're just not used to that. You know, unless you are a kind of person that tends to be a bit more emotional, then you wouldn't be used to suddenly bursting into tears. And of course everybody is asking you what's wrong, what's wrong. There's not anything specifically wrong. There's no control over this. So those are the things that I would pull out. Really interesting to hear Barbara talk about what happens at the end as you start to finish treatment and you're well. So I'm walking around saying ‘I'm cancer free, isn't that good?’ Do I feel exactly like I did in the summer of ‘22? No, I don't. There's something, I'm not quite the same person. I've got a different outlook and perspective. But physically I'm also just a little bit different. And I guess that might take quite some time before I start to feel like that again.
Barbara Wilson: Can I just add?
Katy Bennett: Please, please.
Barbara Wilson: The one thing that's really not understood about cancer is the psychological impact. And because often people think of cancer as a physical illness. So organisations will have wellness programmes where they talk about mental health and talk about physical health. Well frankly the psychological impact of cancer is probably more significant and long lasting than the physical impact. You can manage physical symptoms. What you can't manage is walking down a corridor where you are suddenly triggered back into thinking about ‘that corridor reminds me of the hospital where I was treated.’ The fear of recurrence lasts, for most people, forever. And there's a terrific book if people are interested, not a book, an article, by a clinical psychologist called Peter Harvey. And it's called After The Treatment Finishes Then What? And it's about the psychological impact of cancer. And he says in his article something to the effect, I'm paraphrasing, whoever you are, whatever you do, whatever your personality, a diagnosis of cancer changes your life irrevocably. Very powerful words. It's very important that people understand the fact that cancer affects you in many ways. Confronting your own mortality, which is what we all do, is not a great place to be. And you wouldn't be human if you didn't feel that psychological and emotional stress that a diagnosis of cancer brings about. So people often think they're going mad or they've lost the plot or they'll go to GP for pills to cure their depression when actually what they're feeling is just the normal reaction to a cancer diagnosis.
Martin Groom: And then sitting alongside all that, is that many of us are in fairly demanding jobs.
Katy Bennett: Yeah.
Martin Groom: And then actually we could almost run another episode on how do you manage this workplace both when you're diagnosed, when you're suffering with cancer, when you're going through the treatment and afterwards. Because I like to think I'm a reasonably upbeat and reasonably in control kinda guy. But even now I do walk around the floor and every now and again I think oh yeah but actually I've had cancer and I don't know if I'll be able to do that. And it's only momentary for me. For other people it might not be momentary, for other people it might be a much bigger issue. But it definitely sits there. And you look around and there is also this very strange question in your mind of what are people thinking about me or saying about me or how do they view me now? I try to view myself as exactly the same as I was even though I'm not. So what chance does everybody else stand at that point? Because they're all looking and go oh yeah it's nice to see Martin back. And then what? And I don't know. But it creates a tension in you and it creates a hesitation in you I think. And I think that needs to be understood or at least appreciated by people when you return to work after a cancer journey.
Katy Bennett: Yeah thank you for sharing that. I suspect that will resonate with many listeners trying to…it's sometimes hard to almost articulate all of these different things going on at the same time and how they impact you. So thank you both for sharing those. I want to move on and Martin you kind of touched on this to the…positive is the wrong word, but the kind of I suppose constructive question of, for people listening who perhaps are in HR, in leadership, what can organisations do to support people in this situation?
Barbara Wilson: Shall I start?
Katy Bennett: Please.
Barbara Wilson: I think I may have sort of hinted earlier, it's important that the organisation makes it okay to talk about cancer in the workplace. So some people may have heard, I hope, of the Working with Cancer Pledge campaign, which I think Pricewaterhouse have signed, PwC has signed the pledge.
Katy Bennett: Yes.
Barbara Wilson: And I think doing that, making talking about cancer in the workplace normal, acceptable, is a huge start. I think the other thing is not to just focus on medical treatment because there is a huge gap in services when people finish their treatment between that point, their active treatment, and being back at work. There are very few services around that will support somebody managing that reintegration back into the workplace. Now, you know, we and other organisations will provide support to fill that gap and to continue filling that until the person feels properly settled back at work. I think that's very important. A lot of organisations will focus on, you know, private health which is great, and occupational health support, which is great, and an employee assistance programme, which can be fine. But it's about managing that transition that most organisations don't really understand which is really, really important. And may I say there's a lot of research been done that shows that the line manager can make the biggest difference as to whether somebody returns to work successfully. So it's very important to train and educate line managers so that they understand how best to support somebody who's coming back to work.
Katy Bennett: And that's really interesting and I'm going to come to you in a moment Martin but I just want to ask a follow up because I suspect just as I did when you said that I thought well I manage people. What could I do in this situation? Do you have, I know that you could talk about this for hours and I'm asking for the 30 second summary, but are there one or two things that you would say to a line manager to have in mind if they're supporting somebody in their team with cancer?
Barbara Wilson: Okay so the first thing is to have a sensitive and empathetic conversation with the individual to find out about their cancer, what treatment they're having and what support would be helpful. There'll probably be lots of policies and benefits within the organisation that the manager or the individual may not be aware about. So it's important to have that conversation. I would say there are four stages when a manager needs to have a proper structured conversation with the individual along with HR, if HR is normally involved. One is at the point of diagnosis, to find out what's going on. Secondly when active treatment begins to find out what that person wants to do in terms of staying in touch with work. Thirdly, just a few weeks before returning to work to have a proper conversation about a return to work plan. And the fourth is then to keep in touch and have regular conversations with that person, to check if, for example if you've made reasonable adjustments, they are being properly used and whether other adjustments might be necessary. Silence is not golden. There are lots of times to talk to the person and understand what's going on for them.
Katy Bennett: Great thank you, and Martin and anything you want to kind of add to that?
Martin Groom: Not really. I mean Barbara's captured it perfectly. For me I got a good level of support. I had an empathetic line manager who was appropriate, was sensitive and I have felt that this firm has supported me. It's interesting, once you're back the treadmill is fairly quickly set to normal speed and I think the individual needs to then get a grip. And Barbara and I have talked about this separately around, often enough, it can be the individual that determines what speed they want that to go at. I think you've got to just take a step back and say am I ready to be the person I was 18 months, two years, three years, however long it was ago? And what I've been wrestling with is trying to manage my time, my stakeholders, my relationships so that I can continue to recover. Because whilst, as I've already said, you know, hopefully I'm physically through what I needed to get through, there are moments when I'm not quite up to it yet and I need to just press pause. I don't know if the organisation fully understands that if I'm really honest. But that's up to me to educate them.
Katy Bennett: Yeah. Thank you. So as we draw to a close I had two final questions for both of you. The first I suppose and we've talked about this a little bit already but is there kind of one piece of advice you'd like to share with people who are either struggling with cancer or caring for somebody who's in that situation?
Barbara Wilson: There's a famous psychologist called Julia Samuel who's written a book called This Too Shall Pass. This too shall pass. You'll get through it but you need to get the support you want and need in order to help you do that.
Martin Groom: For me it's the much more pragmatic side. I would now advise, suggest, recommend that you sit down with the person that is going through this and have a jolly good conversation and a strong cup of coffee and say how are you feeling? How are you really? What are you able to do? What are you not able to do? And most importantly what would be helpful for me to do to help you on this journey? And that really applies to everybody both at home and at work because as Barbara has pointed out very eloquently everybody is different. So what one person might need, want, is going to be completely different to the next person. And until you sit down and talk to them and have that conversation and be transparent, again, you're not really going to know.
Katy Bennett: Thank you. And finally we ask every guest on our podcast to let us know what makes you feel empowered.
Barbara Wilson: I've thought long and hard about that. I think I was an employee for many years. I now run my own company. I think I'm of an age and a time in life particularly having got through cancer when it's great to be able to do what you want to do when you want to do it. And I think being in control of your life is a huge benefit if you can engineer that. I think certainly having a cancer diagnosis and getting through it, most people will have a better sense of themselves, of what they want out of life. But then it's important that you remember that and go for it. And I guess that's what I've done, but it took over 70 years for me to get there.
Katy Bennett: Martin.
Martin Groom: Easy for me to answer this one. As we draw to a close, what makes me feel empowered given this particular subject? It's knowing that people have got my back.
Katy Bennett: Thank you. That brings us to the close of another episode of the How to Empower podcast series. This has been a great conversation and I'd like to thank Barbara and Martin for their time and for sharing their stories and thoughts. To you, our listeners thank you for tuning in. For more information please visit the ‘Working With Cancer’ website at workingwithcancer.co.uk. And remember, if you have any concerns about your health speak to a medical professional. Lastly don't forget to share your thoughts and stories on social media using the how to empower hashtag. #HowToEmpower.
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