For this episode of Karger’s The Waiting Room Podcast, we spoke with Bernie Price about her patient journey, her experiences after a gynecological cancer and hysterectomy, as well as the healthcare system as such.

Bernie Price is an endometrial cancer survivor. She is a Transformational Mindset and Life coach, Tai Chi instructor and athlete. Furthermore, she serves as an advocate for women going through menopause.

The booklet “Fast Facts for Patients: Sexual and Reproductive Health After Gynaecological Cancer” mentioned in the podcast episode can be downloaded online free of charge.

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

Podcast Interview

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Transcript

Hello Bernie, and welcome to The Waiting Room podcast. Good to have you here.

Hello, Alex, and I’m delighted to be here. I’m a podcast fan. So, to actually do them, I mean, I haven’t done that many, but I love it. So, thank you for asking me.

My pleasure. Now, let’s jump right in and start with the first question, which would be: Please tell us a bit about yourself and your patient journey.

Well, I’ll talk, I’ll just tell you something about me. I’m a mind coach, and so I help people coach the mindset. I’ve got a daughter of 28. I only ever had one child. Always had really good health. I never had issues with health because exercise and food has always been important to me. And then during lockdown, I started to experience some bleeding. Now, I had gone through, I had gone through the menopause. So, in fact, I went through the menopause, Alex, the day I got divorced. It’s that interesting? It’s like: ‘Your job’s done now!’ And then, so, I was in a dance class and I noticed I was bleeding. And the year prior, I’d had some gastro surgery.

So, during lockdown I had a number of things, like a bolt out of the blue. And I contacted the doctor, and the doctor said: ‘Oh, it’s adhesions, you know, it’ll just be scar tissue.’ And doctors were really hard to get hold of at that time. And it was all by phone and it was mainly locums, but there was like, what I would call an Inner Ding inside me that said: ‘This doesn’t feel right.’ So, I got an appointment by phone with my own GP and she said to me: ‘Have you had any more symptoms?’ And I said: ‘No, just this bleeding. I’ve been advised it’s adhesions.’ And she said: ‘Look, I don’t want to alert you, but I’m going to just get you checked on. We, in the UK, we have a two-week Fast Track program. ‘I’m going to put you through that just to rule anything out.’

And I always remember her saying to me: ‘Don’t lose any sleep.’ So, I put it to the back of my mind. I’m a mind coach, I had something there ready to look at it. And then I went for a biopsy and I went for an ultrasound scan, and four days later I got a phone call because that was the way that they could deliver the news because it was impossible to get into hospital, that we found the very early grade A of endometrial cancer. Womb cancer. And it was interesting, Alex, because it didn’t have a reaction. I think the body’s designed to go almost into numbness. And: ‘But we’d like you to come in and meet with the surgeon who will do your surgery. And we’d like …’ So, that was in December. ‘And we’d like you to come in and have the operation on Valentine’s Day, February the fourteenth.’ The perfect timing!

So, I had my menopause the day I got divorced. And I had my hysterectomy on Valentine’s Day. That’s just really interesting. [laughs] So, I did all the pre-ops. I didn’t feel ill. There was no other symptoms. The only thing I did notice, actually, just thinking about it, was, I noticed that when you’re growing up, when you’re a young woman, you get sore breasts. That was the other symptom I noticed, that, and I thought now they’re going bigger. And I thought, well, I’ve never had big breasts, just positive, never linking the two. Anyway, it was an overdose, it was too much estrogen in my body, apparently so. So, on the fourteenth of February I went for the operation.

Operation went really well, except I had some scar tissue from having had some bowel surgery the year before. Because the year before I had to have a temporary stoma because I’d had an appendix burst. So, there was two operations within a year. So, all went fine, and it was really where, after, I was then discharged from hospital two days later, and that’s when I started to notice the issues that I was experiencing, particularly around emotion, mindset, etc. So, surgery was perfect. Went, you know, went like a breeze. It was when I got home, I started to feel not me.

Okay. Now that’s probably linked to that, I thought to which extent were sort of like that loss of identity, of feeling not very well and sexual wellbeing as well important to you after the operation? You just started to mention it.

Yeah, yes. So, the first question I had for them in the hospital was, would I be, cause, you know, I had been with my partner for three years and, you know, how will this affect me sexually? You know, will I carry on as normal? And they said: ‘Well, you have to let it heal, etc.’ That was the main advice I got in the hospital, and they were lovely. The nurses are just, you know, crazy busy, aren’t they? So: ‘Yeah, you’ll be fine. Just don’t do anything for eight weeks and life will be okay.’

And I noticed, probably two weeks after I came out, I felt, well, first of all, when you’ve had a hysterectomy, your tummy feels, it sounds as if it’s got, it’s a barrel, because there’s all this space. So, it’s all this space inside you and you don’t know what’s going where. So, that would have been helpful to know. Okay, so there was the sexual: ‘Will I be okay?’ ‘Yes, you will.’ Where do all my organs go? I didn’t even think to ask that question. And I’ve got some advice for people at the end of our session to talk about questions.

I then remember phoning up my GP and I got through to a nurse, and I think this is pretty commonplace now. And I said: ‘I don’t know who I am. I’m a confident woman, you know, I do coaching for my work. I help people get their mindset. I start, I cannot stop crying and I feel like, I felt like the barrel, felt like the empty vessel.’ And, you know, she was doing her best. She said, ‘Oh’, she said, ‘you’ve been through a lot. I think you would do well with going on antidepressants.’ And I went: ‘I’m not depressed. I’m not depressed.’ I went: ‘I know because I know enough about physiology, that my body’s hormones are all over the place probably.

So, even though I’d had the menopause, I still had ovaries, and they still would have been producing. And also your kidneys produce estrogen. So, when you had been stripped of estrogen, although maybe a little bit from the kidneys, and I said: ‘I don’t need antidepressants. I need my hormones sorting out.’ So what I did, Alex, was, persistence is my middle name. I believe there’s always a way. And I believe that if you, I always remember a dental hygienist saying to me once: ‘You have to be the itchiest itch and push for what you need.’ Right? So, I contacted the doctor and I said: ‘I don’t feel right. I don’t feel my hormones are right, and I know enough about my body.’

What I was surprised at was there was no aftercare, really. It was more the surgical procedure. Surgical, and I’m not criticizing, I think they’ve got resource issues. And when I’d had the stoma operation, which I’m glad to say is all reversed, I had a visit, I had a scar nurse come around. I had a lot of support. When I had the hysterectomy, it was going to be you’ll have a follow-up, You’ll have a follow-up at the hospital. What would have been great had been a phone call to say: ‘How were you feeling?’

And you didn’t get that?

Not how, you know, I didn’t get that. I didn’t get that. And the hospital, the hospital were great surgically. You can’t fault them, and the surgeon who did it was fantastic. But my persistent pushing got me referred to Paula Briggs at Liverpool Women’s Hospital, and she did, I can’t remember the timeframe, but she followed up fairly quickly with a telephone appointment. And what Paula was interested in was a) how the operation had gone, but more so how I felt.

And she did, she asked a lot of questions, and I said, you know, as I said to you, I said: ‘I don’t know who I am, I’ve lost my identity, my sleeping was up the wall.’ And she said: ‘You’re hormone-deficient.’ And what Paula then did is she took action. She said: ‘Right, we’re going to try you on a dose of estradiol and also testosterone’, which they’re now starting to use for women because we produce it. And I can honestly say, within the space of maybe a month, maybe less, because time gets blurred, doesn’t it, when you’ve been through it, I started to feel like me again. I started to feel like, you know, I was back to myself. I could, do you know how it felt before? I felt like an adolescent. You know, when an adolescent’s hormones are all over the place. That’s when I knew I wasn’t depressed.

So, Paula noticed that I’m quite persistent and asked if I would become a participant to help write a book for the NHS that would be distributed to ladies who were going to go through this, but also used in, I think, nurses training, nurses who look after. Because, somebody said I was quite vocal, but I was always constructively vocal, so I was invited. Would I, would I be a participant virtually to contribute what was lacking in my treatment, what was good and what was lacking. And we’ve now, or they produced a fantastic book which actually would help a woman know the emotional, know the emotional side of it, but also so that they’ve got…

Because I think knowledge and information and insight get you to know what the questions are you can ask. You know, should I be on hormone replacement therapy? Can I come and talk to somebody? So, I contributed to that book and it’s lovely. I’ve seen it. So, for me, I was always determined to make something that can be seen as an illness into a positive outcome for other women. Paula then asked me to do a podcast. So, this is the second podcast I’ve done. And then she said to me, she said: ‘You know, the nurses and all people who work at Liverpool Women’s, they’re going through menopause, a lot of them. Would you come and do a workshop with them? Because, you know, you’re a mind coach, you’ve been through it, you know, you’ve had that experience of what it feels like to feel empty and vacant.’

So, probably about October, can’t remember, I went to Liverpool’s Women Hospital, and we had about, I don’t know, 60 nurses who are not only treating women who are suffering, but they’re also suffering themselves. And the feedback was fantastic. It was, you know, ‘these are tools for life’. ‘I suddenly, I suddenly know how to ask the question.’ I know what I, because I think a woman has to do things herself, like exercise, like eat well, think about things like how do I get up in the morning and think about how I want my day to be. All the mindset stuff that I would do. It’s not going to solve the hormone issue, but it is a piece of the pie.

So, then Paula said: ‘Should we do something like this again long-term?’, so that’s, I’m hoping to work with Liverpool Women’s Hospital, we haven’t figured it out yet, to understand how we can help women, first of all, become empowered, understand what are the questions they could ask, but also what they can do for themselves as well. Because there was a, I didn’t want to exercise, and I’m a big exerciser, so I got a rebounder because it’s gentle on the body and I started rebounding. And I did stretching. I went back to the gym. I eventually went back to dance classes. I teach tai chi, so that’s really good for balance in the body. So, there’s a lot that women can do that might not know how to do or where to go to do it or might not feel like doing it. So, the whole experience, whilst I didn’t get the support and I would have ideally needed, pushed me to be an advocate for women who were going through this cause they suffer. They can suffer a lot.

Excellent. Many thanks for that overview, and that’s really inspiring. And you answered my next questions too in one go.

Sorry. [laughs]

Don’t worry about it. One particular aspect I like to focus on is quality of life and especially mental health. Now, you already mentioned that you did, that you concentrated on physical activity and that it’s very important. Did you have any other strategies or hobbies that kept you, like, going or helped get on your feet again?

Yes, I had a coach. So, I got a coach, and I worked with a coach. And this is why I’m passionate about it, because not everybody can afford coaching. So, I think there needs to be a way that we can help women. But I had a coach. She specializes in helping women navigate the transition in their lives because actually, if you look at this, once you’ve got everything balanced physically and, physically as in hormones, exercise as in health, you know, that’s really important because we know that it produces dopamine, it produces endorphins, all the good neurotransmitters that make you. So, when you’ve been through an experience like an operation, all your brain neurotransmitters are depleted.

So, I did things like I took amino acids, I worked with a coach. I kept very close to my women tribe. So, I always think the wisdom of women is really helpful, particularly those who’ve been through it. So, you know, my yoga teacher, who’s 81, fantastic woman; I took advice from her. I made sure that I went to classes, and I know on the NHS you can access classes. Not just classes for physical health but also for mental health as well. I picked the phone up and I made sure, they say that you become like the top five people you surround yourself with.

So, I made sure that the people I was talking to in my friends and family group brought positive energy. So that was really important. To exercise, big part. Food was a really big part. I went on high-protein; amino acids was a big part because that rebalances the brain, which will be depleted. But I made sure that I kept in touch with my tribe and I went, and I made sure I went out and had coffees with them, you know, because I have a very busy job. So, it’s important to be with uplifting people. And sometimes when I’m coaching people and I say, you become like the top five people you spend time with, your client, whether it’s male, female, will go: ‘Well, I haven’t got a chance, because mine are miserable at home!’.

But in your tribe or in your group of people, there will be people who you can talk to. You can pick the phone up. So, one thing that I think is useful for women to know: Every business has a board of directors to make them successful. I believe every human being should have a board of directors. And on that board of directors, I’ve got a friend, for example, that if ever my mindset needs a pattern interrupt, I phone her up. If ever I need some insight or a question I can’t figure out, I phone another friend up. If I feel like I need a laugh, I’ll phone my brother up. My daughter is on my board. So, it’s important to think about who have you got that surrounds you? Cause you wouldn’t use the same person for everything. Does that make sense, Alex?

That makes absolutely sense. It’s a bit like Who Wants to Be a Millionaire? And you need that perfect question for that perfect person, for that particular question, which only that person is going to be able to answer and to help you with.

And, you know, a couple of other things as well. We always, well, we often expect our partner to be all those members of the board. Yeah. And they cannot be, and then we think they’re unreasonable. But one of the things I think is interesting to share, I was asked by Nuffield Hospital to go and talk as a keynote speaker to about 180 radiographers, nurses, doctors, etc.

Now, my background is: I was a top bodybuilding champion, so I said, they wanted me to talk about champion mindset and when I went I thought, ‘Okay, well I can talk about winning and I can talk about that. But actually the biggest win I’ve ever had is traversing through these illnesses that suddenly came along like the universe hit you across the back of the knees with a cricket bat.’ So, I started talking to the chief sister or the matron, and she went, ‘Oh, are you going to talk about winning the Uverse?’ And I said, ‘Well’, I said, ‘I’m not sure actually, because I have gone through a series of illnesses. You know, one was having a stoma, I also broke my wrist, and then hysterectomy with cancer.’ And she said: ‘That’s your winning story!’.

So, I hadn’t prepared it. I just spoke to 180 people. And what was really interesting, the men came up to me and said: ‘You know, that’s really helpful to know what you’ve been through because we could do with help to help us understand our wives, our partners who are going through this, because we don’t know what we would …’ I mean, they’re very logical, men, ‘Oh, it’ll pass’, etc. But, and they said: ‘If we had more information or more help, that would help us to support them, that when they’re sitting in the chair crying, ‘I don’t know who I am’, and they say, ‘Of course you know who you are! You’re my wife!’, that they will be able to help them and just listen to them.

So, that was really powerful as well. So, I think there’s something about how do we help the men in our world understand the same way we need to understand about prostrate cancer with men. Because, with prostate cancer, they have all of their testosterone taken out. That’s what a friend’s going through at the moment, and he’s going through a really difficult time. So, that was interesting. Can we do more to help men or provide them with resources? And a couple of other things that I think are important. There’s lots of booklets that the NHS have around endometrial cancer, ovarian cancer, breast cancer.

And when you’ve left your appointment, they gave you the booklets. I think we need more than that. I think somebody needs to talk you through, and I know they don’t have a lot of time, because some people will take those booklets and they’ll put them on the side table because they’re not in the place to read yet. Some people will, some people won’t. I think this booklet that I’ve been part of contributing to is a very different kind. It’s about the, there should be some introduction. Here are some booklets to really understand surgically, but also emotionally. So, I know I’ve got a resource there.

And then the other thing I want to suggest for anybody that’s going to go through this or is going through it, when I was in hospital just recovering from the operation the first day, there was a lovely, lovely lady, very unassertive, who, they had misplaced her handbag, and in her handbag was her phone. And I said to her: ‘Ask the nurses to go and find it.’ And she said: ‘Oh, I couldn’t possibly, they’re too busy.’ And what I noticed a pattern of is women will not often ask questions because they think the nurse is too busy. So they will suffer there with anxiety.

I, you know, I asked questions and I prepared questions, particularly around the surgical side of it. And my surgeon, who was wonderful, Sally Pennington, said: ‘Gosh, you’ve really done your homework. Before you go into any operation: What’s going to happen to me? How will I feel? What support is available?’ Because the surgical side tends not to deal with the hormonal side, which is Paula Briggs was so powerful for me. She’s, that lady’s helped transform my life back to who I was. But, ladies, if you’re listening to this: Ask the questions, anything you do need to know, because they won’t be able to mind read what’s in your head that you need to know. That’s one of the most powerful things I think that will give them confidence if they’re going through this.

Wow! Now we’ve almost reached the end of the interview. And my last question for you is: What does your life look like, the life of Bernie Price, look like nowadays? How has it changed?

It’s changed, well, I still do all the exercise. I still do all the food. I still have a very uplifted mindset. I think it’s changed in the respect that I’ve been through a journey. And I think that because I, well, now I know that because I’ve been through the journey, it’s given me volition to help other women. And, and also it’s really brought a sense of real gratitude for health and also that this can be, this menopause doesn’t mean the end of a woman. It’s the start of your radiant self because you haven’t got all that stuff going on.

So, my life’s great. I’m coaching quite a lot of more women now, but I’ve got so much gratitude and I feel a real pull, which is why I talk, Paula and I talk together about could we do something more where I can use my gift as a coach? So, it’s brought a gift into me, which is to turn something that was, could have been miserable and I could have chosen to hang onto that mindset into: I’m free now! I could do what I want, and that’s what it’s done. It’s just, it’s just upped me into a space of gratitude and more resourcefulness actually.

And I really like that positive attitude and outlook on things. And I think that’s probably a major factor in handling such a diagnosis and the situation and coping with it.

It is, because I think just finally people hear cancer and here are the things that humans do: They catastrophize, they delete what they’ve just heard and they mind read. And everybody’s brain does it. So, you hear it, you hear that, you’ve got cancer. I didn’t do this because I know that that’s what humans do, and I have got the resources because that’s what I’m trying to do. But some women will just catastrophize and it’ll put them in some misery, which is why I’m so, so driven to find a way to help them to do their part of keeping your mind calm, knowing that there’s a greater success at the outcome, all those strategies, and keeping a sense of gratitude. And finding the top five people to surround yourself with because you become like them.

So, in short, the answer to your question is, I think I’m more than who I was before. I don’t mean that big-headed. I think I have more appreciation, more gratitude, more importance of mindset, looking after yourself physically, and this desire to help women not suffer.

Excellent. Many thanks. I think that’s a great way to end this interview. Thanks a lot for your time and your thoughts and your advice. It’s very much appreciated.

I have absolutely loved it. And if only one person gets something from this, then we’ve changed a life.