Transcript
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Speaker: Hello and welcome to Fit For My Age, the health and wellbeing podcast from Abysida. I am Michael Millward, the Managing Director of Abysida.
Speaker: Today, I'm finding out about what it's like to recover from a brain tumour from someone who has done exactly that, Jennifer White, who's done just that and so much more.
Speaker: Jennifer is based in Ontario, Canada, one of those places I have visited quite a lot. If I get the opportunity to visit again, I will make use of my membership of the Ultimate Travel Club to make all of my travel arrangements.
Speaker: That is because as a member of the Ultimate Travel Club, I travel at trade prices on flights, hotels, trains, holidays and so many more travel related purchases.
Speaker: You'll find a link with a built-in membership discount in the description. So just like me, you'll be able to travel at trade prices. Now that I have paid some bills, it is time to make an episode of Fit For My Age that will be well worth listening to, liking, downloading and subscribing to.
Speaker: One that will also be worth telling your friends, family and work colleagues about. Very importantly on Fit For My Age, we do not tell you what to think, but we do hope to make you think.
Speaker: Now, hello Jennifer. Hi Michael, how are you? I am extremely well, thank you very much and hope that you can very much say the same. am, I'm doing fine, thank you. Good to hear. It's been a long time since I have been to Ontario, but I've had some great times there. Which part are you based in? Because it's a big place.
Speaker: I'm down near Windsor, Ontario, which is close to the American border, o which is kind of interesting these days. We won't go there. We won't go there. But it certainly is an interesting time for U.S.-Canadian relationships and all the things that are going on. We could do an episode about what the differences are between being in Canada and crossing the border to America and how it's similar and different if if you like one day you could do that yes that actually might be quite interesting yes we'll we'll add that to the list of things to do but for today you are someone who's had a brain tumor and I think for lots of people that sounds very dramatic and it's a very serious condition to have it's very very serious but could you tell me a little bit about your brain tumor
Speaker: I can. So i was actually in retirement. I had been a nurse for over 30 years. And so I was enjoying my retirement and doing things that you love to do like travel and, you know, get invested in hobbies and that kind of thing. And one day i just was not feeling well. And my nurse brain kind of said to me you might be having a stroke.
Speaker: and so i got myself to hospital and they took me in and took me very seriously and quickly did some scans and they said, well, the good news is you're not having a stroke. The bad news is you have a large brain tumor and it's going to kill you sooner than later.
Speaker: Wow. That's a bit of a shock to hear. i It was shocking. It was very shocking to hear. and of course, being the nurse, I wanted to know, okay, where is it? What's it going to do? What's happening? yeah That is one of the things that always makes me wonder about people with medical training. If you are told that you have something, some type of illness, you know about it and you know how that is likely to progress. And when you're told that you have a brain tumor, that expression that you used, my nurse brain kicked in, and you ask that your medical colleagues completely different types of questions to
Speaker: the questions that someone like me would probably ask. You do. And sometimes you know too much. As you said, you know exactly what it means. And it was a death sentence.
Speaker: Wow. So I had to really pull myself together and figure out, okay, well, what are my options? And it turned out that um surgery was really the only option.
Speaker: And that was because when you have a brain tumor, real estate is everything. And because of the location of my tumor, which is it was at the base of my brain and wrapped around arteries, um it was going to squeeze those arteries off and cause a massive stroke.
Speaker: You mentioned surgery. with brain tumours and I suppose with head injuries in general, real estate is really important. And with my non medical knowledge, my understanding of what you mean by that is that if you have an injury, or a tumour in your head, there is nowhere or to so let go, you're not going to get a lump in your stomach, so to speak, if you have something in your abdomen, the the skin will stretch to allow it to expand. But inside your skull, there is
Speaker: nowhere for it to go other than to actually cause damage to your brain and the arteries that feed your brain with blood correct so it's pretty serious very serious your only option is surgery and i presume that had to happen very quickly um It did, although i was diagnosed just before Christmas.
Speaker: And because of the holidays, they had reduced the number of operating rooms that were available for use. And so I did have to wait until early January to actually have the tumor removed.
Speaker: So it wasn't a very nice Christmas with my family, I have to admit. No, I should think there's been all sorts of things on your mind during that time. But did you tell your family what was happening? go Oh, yes. Yes. In fact, um I was very clear with my family that the possibility that I would not survive was high. yeah And so, you know, we had the chats about wishes and and what one would like And I wrote my obituary and I wrote my will up and, you know, all the things that you have to do.
Speaker: Yes. Should that happen. Yeah. And I think that at times like that, telling people is very important because you shouldn't do these sorts of things alone.
Speaker: No. You do need the support of your friends and your family at these sorts of difficult times. Absolutely. Yeah. So you have the operations. And it's a success.
Speaker: Yes. Brilliant. It is. And I was grateful to be alive. The gift of life. Fantastic thing. Yeah, yeah. And, you know, I i had some deficits. First, I was in a coma, which was unexpected.
Speaker: Second, I didn't recognize my husband when I woke up. And I also had to relearn how to speak and walk. So there were some challenges ahead.
Speaker: That rolls off your tongue in such a nice, easy way. But let's let's just take a moment to... we say there are some challenges ahead that's massive mountains of challenges to relearn who the people are that your loved ones and then to be able to communicate and to take do things that we generally take for granted like walking that's that's major challenge Oh, that's so true.
Speaker: Yes, very true. I even had to, you know, relearn how to do simple things like brush my teeth. They walked me to the sink to to try and get me walking. It was more like they dragged me to the sink. Yeah.
Speaker: But I got there and they suggested that I you know brush my teeth. And I remember looking at the tools that you use to brush your teeth and not really connecting what they were or how to use them. So when that happens to you, you're pretty shocked. You're you're looking at things so differently. Is it the sort of thing where, like you say, you're saying,
Speaker: I know I should know what these things are and how to use them, but I just can't work it out. And that brings on the panic of what is happening to you.
Speaker: Yes, absolutely. When you go into the operation, is the expectation that there will be some element of skills that you need to relearn, some element of knowledge that you will need to relearn because your brain is going through the trauma of an operation?
Speaker: yes the impression i get is that it isn't possible to predict really what those types of skills and knowledge will be until it actually hits you after the operation you can't say it will definitely this definitely be that Well, again, it depends on what part of your brain has the tumor.
Speaker: Because mine was centrally located at the base of the brain, it actually overlaps several different key areas, such as motor skills and language.
Speaker: and memory and so I did have a small stroke during the operation which was not unexpected because of how delicate the surgery had to be but for me those were my deficits yeah so what is the process of recovery to get to the point where you are now how does that start Well, my surgery was in January of 2024. So I'm about two and a half years from the surgery. And it's taken pretty much two years to rebuild.
Speaker: um I first learned how to re-walk and that took about two months. And then language took longer. It took about six months.
Speaker: How long did it take before you recognized your husband? Well, um i don't know exactly. we We still have challenges in the relationship because he has 30 years of memories and I don't.
Speaker: And so i came to know him as my husband, but I don't remember him as my husband. That's an interesting way to look at it. He's still your husband.
Speaker: You know that he's your husband. but you haven't got the same memories that he has. You must be late able to get away with all sorts of things then now. but Well, you know, my personality changed a bit after the brain surgery and my interests changed. So what had brought us together originally 30 years ago was no longer there. So we've been creating a new relationship basically from the surgery forward.
Speaker: getting to know each other again, finding common ground, finding common interests. So it's it's been challenging. I can imagine. Well, I haven't had brain tumor, but it sounds like such a major rebuilding of life beyond the physical things that you've had to relearn.
Speaker: That must have been a bigger challenge than learning to walk again. Yes, it has been. And, you know, it's important that people understand that everybody's experience is unique to them.
Speaker: um For me, this has been devastating and yet positive in that I looked at rebuilding as an opportunity.
Speaker: I chose not to do the, oh, gosh, I've lost everything, feelings. And even though I grieved it, I have chosen to look forward and to create a new path that I never would have have had, had this not happened.
Speaker: So when one door closes, and another the door opens, if you have the right mindset to actually create the opportunity from it. Exactly. I mean, i I was grateful to be alive. To me, that was everything.
Speaker: Yes. And when you're alive, you have the capacity to try new things. If you're dead, you're dead. But if you're alive, there's hope. And with hope, there's curiosity and dreaming and challenging and trying.
Speaker: And that's kind of where I was coming from. Yes. For you and also... You need the buy-in, I suppose, of your husband and your family and your friends to that process as well.
Speaker: Yes, and and even that was a challenge. Because I was so focused on trying to create a new existence where I was serving and I was finding joy and I was contributing to the world, my husband said to me, you're too focused on trying to recreate this new new life that you're kind of forgetting about us.
Speaker: And I realized that, yes, you're you're right, because I wasn't focused on him. i was focused on me. And that was very different. Yes.
Speaker: He sounds like a great man. He is. He is a good guy. He's been a real angel for me. Good stuff. What sort of things were part of your reinvention? What sort of things did you did you take up? Well, um as part of my speech therapy, because things weren't progressing as fast as we would have liked them to, um my speech therapist said to me, why don't you try writing things down?
Speaker: and And when I realized that I could actually express myself in words as opposed to speaking, I realized that writing was kind of enjoyable.
Speaker: And so writing as a skill helped me to rewire my brain. And one of the things that I did was I went and I found some courses that would allow me to learn the art of writing fiction.
Speaker: And by doing that, I was challenging my brain to to get it together, basically, and start progressing. And again, the rewiring process helped me to be able to grow and heal.
Speaker: Yes, that's very interesting because writing fiction means you've got to be creative, so you've got to use your imagination. Exactly. Rather than if you're writing something that isn't fiction, you've got to deal with facts and figures and verifying them. But it must have been more difficult, more of a challenge to create fiction.
Speaker: than it would have been to write something that was, here's my memoir of my treatment, etc. Here's the fiction. That must have been more challenging. Fiction actually helped me to get some memories back.
Speaker: Because as I was thinking about and using my imagination and my creativity, I was thinking, I've got all of these years of nursing background.
Speaker: that had tons of stories in them, but I couldn't really remember them. But as I started writing down ideas, things started coming back.
Speaker: And I would check with my family, check with friends, check with colleagues that I had worked with to say, am I remembering this or am I making this up?
Speaker: And they were able to validate that what I was saying and thinking had in fact happened. So that felt good. it empowered me to know, okay, things are starting to happen and my brain is starting to regenerate what I felt I had lost.
Speaker: Why do you say regenerate what you thought you'd lost? Yeah. Well, because i knew i knew that I had a filing cabinet in my head of memories that I just couldn't access. And so by writing, i was able to somehow retrieve that information, and it started coming back.
Speaker: So when I was writing my medical thrillers, I was taking memories that were kind of scattered, and pulling them together into something that made sense yes i can see what you mean the the structure of the creating the fiction okay it provided the opportunity for you to start organizing that filing cabinet in your brain again and pulled the stories in yes exactly right yeah so what sort of fiction were you writing or are you writing
Speaker: So I am writing a series of medical thrillers using my nursing background as well as my experience as a patient. I created a character who's my protagonist, who is a nurse, who's younger than I am, but is a nurse.
Speaker: And she had had brain surgery as well. And I gave her some of the deficits that I had. And I put her back into working in an environment that I had worked in, which was an intensive care unit.
Speaker: And I had her struggle with some of the the challenges that I had, like memory loss and and a bit of speech issues and a bit of fatigue and the the medications that you have to take.
Speaker: And I built a story around that And that allowed me to express how I was feeling myself through this character.
Speaker: So it was very healing, actually. It's a way of getting how you are feeling out in a most neutral way. You're telling the characters in the book how you feel rather than telling people around you.
Speaker: Yes. Yes. That's right. So I basically created the character who was me and expressed my thoughts and feelings and frustrations and anger right through the character.
Speaker: What is the character called? Her name is Abby Roberts and she's a registered nurse. Abby Roberts, a registered nurse who works in intensive care.
Speaker: Yes. So in the first book, she works in an intensive care unit, and there's a story that evolves from that. In the second book that um is going to be published very soon, it's called Terror at the Manor.
Speaker: And I used my... my history of being a director of nursing in nursing homes and running nursing departments and crafting a story around some of the things that I saw happen in nursing homes here in Canada and created a thriller But it also inspires discussion.
Speaker: And I say that because what I've done is I've taken um complex medical issues that are happening today across the world, like burnout of nurses and nursing shortages and tight budgets and inability to access medications and those kinds of things.
Speaker: And i incorporated them into the stories. So as people are reading the stories, they're going to go, oh, I never thought about that. Gee, I wonder if that's something we need to look at.
Speaker: is You're using the experiences of a character that is based on a real character, yourself, and placing them in the context of what is really happening within healthcare, not just in Canada, but all over the world. The shortage nurses, shortage of drugs, all sorts of various different things. right So yeah what was the first book what was the first book called?
Speaker: The Triggering Scent is the first book. no The Triggering Scent. Tell me some more because that's what That's if people are in intensive care, then it sort of evokes the idea that scent is one of those senses that although someone may be in intensive care in a coma, they can, they might still be able to smell things.
Speaker: Yes, there is certainly that possibility. And we assume that people can hear things too. And i recall, yes um like I could probably pick out specific nurses by their voice because I remember hearing things, I guess, while I was in my coma.
Speaker: you know, reassurance and them telling me what they were going to do and and that kind of thing. But you're right. When you have a brain tumor and you have deficits, parts of your brain take over for parts that are missing. So you may have a stronger awareness of scent or smells.
Speaker: You may have a stronger awareness of sounds or voices, those kinds of things. So yes, I deliberately chose that as a way that um the character becomes aware of something traumatic that happened. Ooh, something traumatic that happens.
Speaker: It's, um I want to ask you, but I think that might be a bit of a spoiler for the book. It might be.
Speaker: But this sounds as if it's it's something that has now become something of a passion in its own right. Your your new activity is this this character and also not just writing the fiction, but bringing in the the reality of healthcare in the 21st century and raising awareness of those issues within the context of a novel in in perhaps the same sort of way as people like Charles Dickens did around the issues 19th century Victorian England.
Speaker: Exactly. um You know, the the key to the books is to entertain, but it doesn't hurt to throw in real life logistics that people can relate to. So it's not a um a story that's out of this world. It's a story that happened, that had ramifications and had, um you know, direct...
Speaker: um effect on people. So it's something people can understand and go, yeah, i can see that happening. Yes, I get that as well. It's like, yeah, this is the scenario, but it's from your lived experience.
Speaker: And this is what is happening in healthcare at the moment. And you bring that together to create something that the leader reader could actually go, yeah, I can imagine that happening or that's similar to the experience that I had when I was a patient. or I was visiting patient or even medical professional.
Speaker: Yes, and when you can relate to something like that, it it's it's more powerful because it um it brings sort of full circle your own experience. It validates it perhaps, and it also raises questions about what can we do better or should we make be making change?
Speaker: yes which is essentially where the whole sort of story starts, which is you having a traumatic experience and deciding that as a result of that, you were going to change and you were going to use it to your advantage. And now you're using it to the advantage of other people. You sound brilliant. We will put some links to your books, to your website and to the books in the description. But that, you know, I said to you, we'll talk for 30 minutes or so, and it has flown by, hasn't It's been so interesting.
Speaker: I know. It goes quickly. But I am really grateful for the time that you've spent with me today, and it's been absolutely enthralling to hear your story. I am so pleased that the speech therapy has worked so well because you would never know that you'd had to go through that, and I really do appreciate your time and wish you all the best for a continued recovery as well.
Speaker: Thank you so much. Thank you. I am Michael Millward, the Managing Director of Abusida, And in this episode of Fit for My Age, I have been having a conversation with Jennifer White, who has survived a brain tumour and discovered a whole new world as part of her recovery.
Speaker: At Fit for My Age, our aim is proactive positive ageing. Knowing the risks early is an important part of maintaining good health. That is why it we recommend the health assessments from Newark Test, especially their annual health test.
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Speaker: Remember, the aim of all the podcasts produced by Abbasida is not to tell you what to think, but we do hope to have made you think. Until the next episode of Fit for My Age, thank you for listening and goodbye.
