Updated: Jun 22, 2021
Does the topic of secondary breast cancer make you uncomfortable? Is it the invisible elephant in the room that no one's discussing? Have you had a concern about secondary breast cancer but didn't feel heard when you were talking with your provider or your providers? Secondary breast cancer and recurrence are both ongoing concerns in cancerland, and so today we're going to talk about it. My guest today is one of my international breast friends and describes herself as a cocktail slinging, art doing, zip-lining, horse rider before being diagnosed with secondary breast cancer at the age of just 28. Tassia Haines is an amazing advocate and has an incredible blog called Pink Is Not My Colour. Her writing style is rife with an authenticity that comes with a diagnosis like cancer. Join us as Tassia and I talk about fear, secondary breast cancer, and how it's not about dying with cancer, but how you choose to live with it.
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Hello and welcome to Your Killer Life, a podcast where we talk about the really real realities of a killer diagnosis like breast cancer with a focus on health, hope and happiness as we build an intentional killer life. I am your host, Tammey Grable-Woodford, and thank you for listening in.
I have a question. Does the topic of secondary breast cancer make you uncomfortable? Is it the invisible elephant in the room that no one's discussing?
Have you had a concern about secondary breast cancer but didn't feel heard when you were talking with your provider or your providers? Secondary breast cancer and recurrence are both ongoing concerns in cancer land, and so today we're going to talk about it. My guest today is one of my international breast friends and describes herself as a cocktail slinging, art doing, zip lining, horse rider, hopefully not at the same time, the zip line in the horse before secondary breast cancer at the age of just 28.
Tassia is an amazing advocate and has an incredible blog called Pink is Not My Colour. And she is joining us from Wales. And so color is C-O-L-O-U-R , which will be in the show notes.
Her writing style is rife with authenticity that comes with, well face it, a diagnosis like cancer and Tassia. I just love your tagline. It's not about dying with cancer, but how you choose to live with it.
Could you tell us a little bit about you?
Thank you Tammey that was lovely. Yeah, so basically I had primary breast cancer at twenty four. Yeah, 2016. I won't linger on that too much. Basically went through it. You know the usual chemotherapy, discectomy, had radiotherapy and then I was on remission. Essentially. You know what, it's like you're fixed now. Off you go.
So I went off to live my life for a bit, that's where the ziplining also and stuff came into it, and then at twenty eight, so January 2020, I was diagnosed. But on December the thirty first I went to a general practitioner, so the GP, with back pain. So I've been having all weeks of December, fell down the stairs at the start of December. Brilltiant. So I left it kind of a month and then it started getting worse and worse. I thought I better go and check this out.
So I went December 31st seen a back specialist. Long story short, because it is a long story, pretty much. I went back and forth to the general practitioner six times and I was assessed ten times. So by different people, including the supposed back specialists. And by January 30th, so not even a month later or just about a month later, whilst waiting for a kidney scan, I was driving to work one day with my partner and I felt really sick.
I opened the car door just to lean out and do what you've got to do. And kind of like I just felt the blood rush from my face and this blackness. And I. I just remember feeling the pain at the back of my spine when I sort of came to my legs were underneath the car. I kind of fell out and my cheek was on like the cold, wet pavement. I mean, it was January it was freezing. And I remember I opened up, and I had longer hair then, like a bob, was just on the floor.
And when I sort of, sorry to be graphic, kind of like vomited a little bit just like this white, foamy, it had started like running towards me. And I remember the panic thinking, oh, my God, this white foam is coming towards me. But I couldn't move because my my back and my spine and everything, it's like tightened up. So again, long story short, pretty much 14 hours later. Then I had the diagnosis of secondary breast cancer.
But by that point, if I'm honest, it wasn't really a shock to me to kind of like what we touched on earlier when we were talking, the idea of, it is just kind of like you're young, you're not going to get breast cancer, let alone secondary breast cancer. But what I was told in my end of treatment care after my primary cancer was that there is a thirty three percent chance of this coming back and killing you. The fact that it's not represented in charities, it's not represented by your medical team, they don't bring that information towards you.
I find that really scary. And then that pretty much started my my advocacy journey then, if you like. And yeah, I kind of found your podcasts and everything.
Well, your blog is amazing. And you caught my attention with When Fear Kills. And I'm going to come back to that before I do, I just want to say, I mean, look at you've been in the Daily Mail. There's a YouTube video of you talking about metastatic breast cancer in your 20s. And I'm going to link to all of that in the show notes for listeners or anyone who's watching on YouTube. So you'll be able to click that and follow that.
And before we talk about secondary breast cancer I do want to take a second, because I did I did want to pull up the definitions and I wanted to give those definitions not just off the top of my head, but recurrence of cancer, of course, is when cancer that is the same type as the original cancer comes back, although it may be in a different place, but a secondary cancer can develop after you've finished treatment for the first cancer.
And unlike recurrent, the secondary cancer is a different or new type of cancer diagnosis. And there are so many factors that play into that. And so when you, so you were secondary cancer and not recurrence?
Yes, that's right.
OK. And I knew that because I cheated and looked at your blog and totally read your stuff before we got together. But I wanted to give the opportunity to talk about that because one of the things that caught my attention and I didn't I didn't realize this, right? All of us in cancer land were kind of a you know, we're all on the same train and at different stops and eating in different meal cars. Right? There's all kinds of stuff going on.
And so I hadn't thought about secondary breast cancer being something that might require a trigger warning. And, you know, to your point, you're right. Like you ring the bell or you finished treatment or, you know, whatever your healing process in treatment is and you sort of think about being done. And yet I know for me personally, you know, that I have a weird pain for two days and I'm like, oh, my gosh, you must be the elbow cancer because my elbows in.
Right. Like, you just you have that constantly in the back of your mind. And so two things I really want to talk about, not just the trigger warning. And I made a note so we'll both remember and come back to this, but also age bias. But your blog post, does secondary breast cancer upset you to the point that you need a trigger warning? Can you talk to us a little bit about that and kind of what your experiences there?
Yeah, I'll keep some of it vague, just not drop various people in it, doxxing, that sort of thing, but a few incidences occurred last year. So like you said, I thought having been through primary cancer, too, like you just said, I thought we were all on the same train, all in the same boat. I didn't realize how sort of cliquey cancer communities can be. So shocking that was. I thought, wow, we've all got this life-altering illness in my case.
And Stage four case. Stage four, by the way, is metastatic secondary for anyone confused. Yeah. Is, wow, we're dying with it. So, you know, can, you know I got a pretty thick skin. I'm OK, but you don't need to be so mean kind of thing. So basically it would happen. I like to go to a lot of forums. I like to find a lot of younger women dealing with it. My process of dealing with it is just to talk, talk, talk, talk, talk till the cows come home.
So when I'm on certain forums and things, so you get into some discussion with people. And what I found is I've got to stop, start taking myself out of some younger women forums and start putting myself in secondary breast cancer forums specifically because, now I must stress it doesn't happen often, but it has happened a number of times to put me off. You will get maybe one in a couple of people who you talking about it, and then you you're not trying to bring the mood down or anything.
Say you sharing chemo tips or something like that. Then you might say something which they are, you know, stage four and you might say something that's on your mind thinking it's a safe space, like, well, I'm not sure if I'm going to live to my wedding. Yeah. You just if you can't speak openly in a cancer forum, where can you speak openly? And you might get some people because of some of it's anonymous to say like, oh, I don't think that's the place for this kind of conversation.
It's happened online as well. Certain charity in the UK, certain charity Facebook pages. There was a friend of mine who was featured on one of these on the charity Facebook page talking about her secondary cancer. And there were a few comments. They've been deleted, I understand, a few months ago. And there were people in the comments kind of saying, "I didn't need to see this on my Facebook page", you know, and it's really like, wow, I'm sorry that our life offends you.
But you you kind of the frustrating thing about this is the advocacy and raising awareness that we do it is not for us. It's too late for us, unfortunately. I mean, hell, if I knew there was a 33% that I might get it. I might have been a little bit more vigilant. I certainly would have pushed a lot harder not to have ten blinking assessments. So, yeah. So chemo brain.
You are in the right place, you don't have to apologize for that.
Cheers. Cheers to my friend. The thought that breast cancer. Can you help me, Tammey?
I sure can. Absolutely. Well you know, so we were talking about just in the forums and I find this so interesting because I know my personal perspective has always just been, you know, none of us asked for this shit show. Right? Like, we were just sort of drafted and we're all here going through it and doing the best that we can to live our best life with what we have going on. And everybody we're all at different stages.
We're all, you know, even you can have two people with the exact same type of cancer, with two different medical oncology recommendations, doing two different treatment regimens. And so you just you kind of never know. I know that from my own experience with my second opinions. Right. How drastically they varied. And so we are all in the same boat. And if we can't have grace and love and support for one another, I just I, I would only hope that we could find that regardless of the stage, regardless of gender, I've had a few male breast cancer survivors on.
And so it is a little heartbreaking. And at the same time, I can say that as someone who's been through it, I understand. Right, hurt people, hurt people, and not always intentionally as we grapple with the realities of really what cancer can look like and death, you know, I can't I can't speak for the UK, but I can speak for the states.
Like we don't like talking about that. So, you know, death is a tough topic.
And yet when you hear those words that you have cancer, you're mortality and death are are all of the sudden, you know, like a two by four to the forehead, it is something that you are facing and so,
I can understand some people wanting to, I guess, protect their their mind space for lack of a better way to put it. But at the same time, I would hope that we also have enough grace to understand that we have sisters and brothers in the same space, that need to have these conversations in an open, authentic, genuine, caring, loving way because we are all facing reality. Bottom line, yes, we are all walking towards the same destination, death and taxes. None of us get out of it.
But there is a whole new level of awareness that comes with a cancer diagnosis. And so I'm so sorry that you face that. And I will tell you, I will share I've noticed some of those similar things when I was first diagnosed and I was in a in a forum and said that I had metastases to my lymphatic system, to my lymph nodes as well as my dermis, I was immediately and not so nicely corrected that I had micromets. Otherwise I would be stage four.
And it was interesting to me because again, in that environment, you would hope that we're just lifting each other up and helping each other out. And I only knew what my doctor provided me right like I did. And I don't have a medical degree. Did not stay at a Motel six last night. This is not my area of expertise.
So, you know, I'm learning with everyone else. And I'm so sorry you had that experience. And I am still kind of surprised, especially from a charity aspect, that some of that would be deleted, because in many ways, when it comes to advocacy, it seems like an important part of the message. This is the reality that we're dealing with, and there is a real sense of urgency. There should be a real sense of urgency because of it.
Yeah, you're right, I mean, to be honest with you, speaking from the heart. After I was diagnosed with secondary breast cancer and I got worse, the first bit of chemo done and then I was on more regular treatment and I could walk, I started getting into advocacy, Because I thought there's got to be something more like personally, my health care wasn't great. I was let down by more doctors, not just in the diagnostics stage. I was let down by more doctors than I was, you know, made well.
So skeptical is a word. I never really felt like I could fully trust in them. So, yeah, the issue sort of came that's it right? I'm going to have to make some connections. Let's just get involved, throw myself in. And the more I started learning about secondary breast cancer death started to become the easy thing to deal with. I thought, well, I know I'm going to die of secondary breast cancer when it comes.
I don't know. The lifespan that's quoted a lot in the UK is two to three years and then other sources say three to five years, though they don't know exactly because they haven't even got the right data. We'll go into that in a second. And so basically it was like, wow, that is there's no consistency where you live. It's all throw caution to the wind. And the only thing you can rely on is the charities, which aren't let's just say they could be doing a lot better as well.
And again, I will elaborate on all that, not just screw everyone over and just be like everything's all well. I mean, I'm still alive. So obviously some things are going well. But I do think if I hadn't taken a lot of things into my own hands, I don't think I'd be sitting here talking to you right now. That's not say you don't listen to your doctor. That's just saying try to understand, like you've said before, be your own advocate.
Try and understand what's in front of you. Empower yourself. Doctors are not gods. Yes, they are educated in it. You should listen to them. But it's a conversation at the end of the day, not a dictatorship.So, yeah.
I love that you said that because self advocacy is so important. And I always joke that you're the the resident expert when it comes to your body because you've been living in it for however many years you've had it. And so you really, truly are. And it is a dialog. And so I kind of do want to go back and ask that question about age bias, because at, did you say you were twenty six when you had that secondary.
Twenty-eight. OK, so originally at twenty-four, in 2016, and then you were twenty-eight with the secondary. So twenty-eight you're still young. And you know the crazy thing about cancer is that I was super healthy at the age of forty-three and like literally doing pull-ups running every other day exercising and here I had a stage three B cancer growing inside of me. Who knew. Right? And so it's sort of this weird disease that until you know it's there and start monitoring it sometimes it's a really sneaky and so at the age of twenty-eight and you were horseback riding and ziplining and doing all these things.
So I can see where a doctor might at first think, oh well you're twenty-eight, you're active, you're doing all these things. It's probably just you twisted your back, you torqued a thing and yet ten times is a lot. And so I think that when it comes to patient advocacy, you know, my heart actually breaks for you, Tassia, because you shouldn't have had that moment in the car and on the highway to get somebody to listen.
And so what changes have you kind of made for yourself when it comes to self-advocacy after? Because I imagine you're a bit of a bulldog of a self-advocate after that.
Well, basically, since after the chemo and all the rest of it, I have been lucky, like I've been stable, growing slowly but within the parameters. So I'm happy on this treatment line. Before that, there were certain things. So basically when I was in hospital, every time a nurse would come in and give me my meds and line them up. What's that? What's the mg? How much? Why am I on that? Every time?
And think of this like four times a day in the hospital. And I did actually, again, not not badmouth the people that work in hospitals at all. Like I love them, but got a couple of occasions because they are human. A few agency nurses might have gotten some of my dosages wrong or the wrong meds, like someone maybe accidentally gave me another shot of paracetamol again. But then luckily because I was I was high on morphine, but I bloody knew what I was taking.
And then it kind of like I got a bit annoyed because when I left hospital, I was on a lot, I was on a high dosage of steroids for about a month. I needed them at the time. But long story short, because my life is just full of long story short and we'd be out all day if I went into it. I was on the steroids and they didn't really need to be longer than a week. So within the space of a month, I'd gone from like nine and a half stone to 13 stone.
No word of a lie, like, you know, my bag stretch is like being pregnant, but just like on steroids.
And what I went into the oncologist meeting and this was just before covid hit, by the way. So you can't really blame that you know, everyone blames it. But back then, it was legit, just issues due to certain miscommunications, hidden issues here and there. Again, I can't really go into it, but let's just say, yeah, I was on medication, I should have been on. And also, again, it was assumed that the cancer they had would be the same protein HER2 negative as I was on primary.
So HER2 is the protein that sort of covers the cancer cells? They assumed I would be that because it's like only a five percent chance. Turns out I was HER2 positive, so I'd been on the wrong medication for a month. So let's just say when it came to self advocacy, I felt like I learned the hard way of I need to be on it. So then I just researched myself well, what it meant forums and websites and just constantly.
And then when I joined MET UP UK, later last year it was brilliant because I literally have a question and is just full of knowledgeable women in that group. So it's just constantly like, what does this mean? What does that mean? And I'm getting that. I'm so thankful to have found that now.
But there's so many women that don't have that and it's scary. And they have to turn to the charities and the charities don't work around the clock and. Yeah.
And limited budgets because they're charities. And so they're you know, they're dependent on the funding that they can get through donations. But this is really important. So they it sounds like correct me if I'm wrong, it sounds like they assumed you had a recurrence, but you actually had a secondary cancer. Is that correct? Like they started by treating you as though it was the same cancer and it was just a recurrence of that. And then you had some additional testing and they found out it was not that it had changed or something had changed and it was a secondary or a different diagnosis?
I think it was more along the lines of they knew it was secondary because of the CAT scan they done. Because I should have mentioned earlier, my bad, it's breast cancer, but it's in the bones. And I basically got it from both my femurs, my hips, my ribs, my lumbar spine, all with the vertebrae, the neck and the skull. So from the extent of that and from the CT and MRIs, they could see that that was metastasized.
So that was secondary cancer. It wasn't like a local reoccurrence or anything like that. That's a good question. I actually consider that to be an option. But yeah, they just assumed that it might have just been.
Basically, breast cancer cells can mutate so what , Im not an expert, what I think happened is it was from the original primary I had, and even though there was no evidence that when I went into remission, it only takes one cell to find the right environment. And if you've got bad luck, that's the way it is. And yeah, I think it just mutated into HER2 positive and that's what got me to where I am now, eventually.
And I think it's also important to kind of pause for a moment and say, because we did both share experiences that were maybe not positive in some of the online groups and forums and things like that. And sometimes it's just not the right energy, not the right room, not the right right place. Because as you just said, there are those spaces where you have so many women and men who are sharing their experiences and so wonderfully open and authentic and genuine in their care and being taking care in how they are interacting with others who are on this journey.
And I know for me, you know, once you kind of find your home, you're like, this is this is great.
You're contributing to community. You have community. And especially with all the covid craziness being able to have, that has been absolutely amazing. And you're right, it's everywhere, from charities to forums to Facebook groups to Clubhouse rooms to like there is just there are a lot of us, a lot of us.
And yeah, once you find your your sort of like your your cancer community home, it's a really, really good feeling.
It's a club you don't want to be a part of.
But they kind of help you out at the same time because you found your people.
Yeah, sorry. No, you're absolutely right.
I think about how lonely and hard this would be. And, you know, it's just having at first when I was first diagnosed, of all the random things, a friend of mine said, hey, I have another friend who was just diagnosed with breast cancer. Can I connect the two of you? So we were diagnosed in the same month, and even though our treatments were different, our cancer types were different. And, you know, our choices in bilateral unilateral like mastectomy, all the things are different, but still kind of having a buddy to go through it.
Sadly, since then, I've had three other friends who've been diagnosed with cancer and so sort of had this tiny cohort of people I already knew and loved that, you know, like literally being with my friend and I being the first ones, you know, people saying, what is it look like when you're going through reconstruction and sharing photos and having those conversations, which was really so helpful. And, you know, then kind of stepping out from that and looking at some of the other groups and things, you know, and some of us went to in person groups.
I live in a very rural area. So the online thing worked for me. I'm a loving Clubhouse right now, the Clubhouse app for that, because that's just been fantastic. But finding that community is is really important. And I think the other thing interesting about the community is that sometimes I shouldn't say, sometimes too often you'll see a woman who will post a picture of something or ask a question and say, you know, this doesn't feel right and I can't reach my provider.
I don't know if I should go to the emergency room or not. I don't know. And it's, you know, with. Honestly, any major procedure, but, you know, when you have implants and you have cadaver tissue and you're going through reconstruction or even if it's your own tissue reconstruction, cellulitis is a real concern. MRSA, is a real concern like all of these things. And to have that knowledge base, that collective is so powerful and such a good resource.
Definitely, yeah, I agree.
So what would you really want, men and women who have had breast cancer to know about secondary breast cancer and how to advocate for themselves?
Cool, I'm glad you asked that. So, yeah, obviously in the U.K., things are a little bit different to the US. Everything I say can only say from my knowledge as someone who lives in the U.K., but I'm sure it must work similar where you are.
Other than the fact that we have the NHS, I'm imagining it's kind of similar. But anyway, I can go into from a British perspective. Sorry.
Yeah. So basically I just want to give a little bit of context for going into exactly what if that's OK. Well, earlier on when I said I was feeling disturbed about the things I've learned about secondary cancer, it went beyond like the clicks and trigger warnings and all that sort of thing.
It's basically feeling like being let down all the time, not just by your oncologists or whatever, but by your by your government, by the charities. So when I started doing more like self advocacy, I was doing a lot of research for my blog and I found Cancer Research UK is the biggest cancer research charity in the UK hence Cancer Research UK. In 2018 they turned over 634 million pounds.
And that's just in one year 2018, and it just made me think and I know in the grand scheme of things, 634 million might not be that much money, but I thought, well, isn't it mad they're generating that kind of money every single year?
But we still have to go through things like chemotherapy, which has been around since World War Two. That's interesting. So started digging a little bit more, a bit more and I saw secondary breast cancer, OK, so by then I had seen MET UP UK and the statistics presented forward and thirty one people die of breast cancer in the UK, it's the biggest killer of women under 50 in the UK. So all these shocking numbers are coming up to me.
And I thought, wow, the one that stuck out the most to me was thirty three percent of women that get breast cancer will go on to develop metastatic breast cancer. So one in three people. I thought that's huge. Surely that means that's represented in the charity. So I went to the biggest breast cancer charity in the UK, Breast Cancer Now. And they kind of help lobby the government. They put a bit of money into secondary research, clinical trials, that sort of thing.
And I thought this will be the one to go to and I couldn't find any transparent information. All I could find was they aim to make breast cancer a chronic illness by 2050. And I thought I could die right now and I could be reborn and live to the same age I am now and it'll still kill me by the time they have a path. So I thought and there was nothing there to sort of say what they were doing towards that.
It was just very not, it was a lack of transparency. So it's the forums I asked around one lady kindly sent me a screenshot of a chat she had with someone that some time ago and the number they came up with was Breast Cancer Now spent 18 percent of their budget towards secondary resources. And I thought, well, surely it should be at least thirty-three percent if you want to be diplomatic. And then I thought, well, secondary cancer, secondary breast cancer is the only breast cancer that kills. You can't die from primary breast cancer.
A secondary breast cancer will kill you. It is a death sentence, not flowering it up. That's what it is. And. Kind of the shying away from just that truth, you know, like this is what it is and kind of what we were talking about, some women that have had primary might feel a bit upset and for their own personal mental health, don't want to deal with it, but know it's a very real risk. One in three is a massive risk.
Everyone needs to be aware of it. So you sort of looking around and you realize no one's bought that, everyone seems really like, just completely apathetic, you know. I wrote in the blog, coined it myself, I loved it. I was like, well apathy kills more than direct action. So we need to take direct action on apathy. And that goes all the way up to the government. You know, like I said, the government put a mandate out in 2012 to find out how many people in the UK were actually living with metastatic breast cancer.
It still hasn't been done.
It's still you know, it's taken nine years to literally, literally count people with my illness and go and put it into the picture. That's it. I know they need to have a meeting about an audit and I'm like, why is this so hard? Yeah, so my little rant there. But this is what a lot of people don't understand. It's secondary breast cancer doesn't need to be the death sentence that it is. Really doesn't if we would give them access to more drugs that we can't get on the NHS, a lot of people have to crowdfund for their own drugs.
Also, there are silly rules that don't need to be there. So say if you have a certain type of chemo on line one of treatment and then say that treatment runs out, it's growing, you go on your line two. By the time you're on line three, you could have this option of this wonderful clinical trial drug. But because you've had this chemo trial one, you can't have that. Right? So these weird red tapes that don't need to exist.
They won't operate on you. They won't remove certain tumors because it's a little bit like, what's the point? Even though it will prolong your life. I personally believe that if they took even just the tools available to them now, I could, I would guess that I could probably live to be 60. I would be that confident if they literally used everything they could on me right now that they just don't. It's a money game, isn't it? But it feeds into itself until they collect data in the UK, then they don't actually know how urgent it is.
And then if they don't get the representation, then they're not going to collect data. So it's just constantly. Meanwhile, you know, I've lost eight friends since September. We are dying very quickly, especially since covid. It's a very real issue. It's very scary issue. Yeah. Sorry.
No, please don't apologize. I'm over here and I'm thinking to myself, like, there's so much data that's already known. They know that thirty three percent. One out of three. Right? And yeah. And and you have something we don't have in the States, which is NHS.
So I would hope there would be ICD codes that they could pull where they could get this information.
And so it's really interesting.
And as you're talking, I'm actually wondering to myself if part of it is because it doesn't fit the narrative of cancer survival, which I have a blog post from when I was first diagnosed talking about cancer math and how ridiculous it is because you're considered a survivor if you make it five years.
Right? And then but you can still end up with a secondary and you can end up with a recurrence, but you are still a survivor because you made it to five years.
And so it's like this wishy-washy math thing that happens where we count the data we want to count. And then I think there's also this. And you talk about the sexualization of breast cancer on your blog.
But I think there's also this, there are a couple of things. There's the sexualization. There's the warrior subculture where, you know, we're all warriors. And if we didn't fight it right, that's how we lost the battle. Right? I mean, that's not how it's said. But as a person who's diagnosed with cancer, that's how it sometimes feels. And I know not for everyone. And and I want to also say I support anyone who who that is a part of their healing process, their journey.
And they are absolutely can relate to that.
It wasn't something that related was relatable for me. And then also, when you think about I call October, the Cancer Awareness Month, I call it Cancer Cochella. Right? Like, so here we have Cancer Cochella every month where we acknowledge the fact that we don't have a cure and we're still, quote unquote, in a race for the cure and we're doing all these things for the cure. And while we're doing it, you have women who are literally fighting for their lives, but damn, their makeup is on point there.
Right. Like the imagery that is given to us and shown to us. And so as you were talking, it really had me wondering if part of it is that it just doesn't fit that cancer narrative or the optic that that that they want to work with. Or and by they, I don't even know who I mean, society, you know, whatever, that that is the standard, I'll just put it that way, the optic that is the social norm of what breast cancer is, because it does feel oftentimes with breast cancer, like we should be celebrating that we got a boob job, which we did not, that we should be grateful that we got the easy cancer.
Right, like all of these things that are said to us.
And then the reality is exactly what you're talking about, that, yes, it kills. My gosh, I wish I could write fast enough, but apathy, killing more, killing faster, killing more than direct action. I mean, that is absolutely true.
And for us to to really make a movement for understanding metastatic breast cancer, because that is something that has been I don't know if it's been overlooked or if it's just been that research has been on early detection, and because that's where it started, that is leaving us with the focus on primary cancer, I'm not sure.
I mean, of all the things you're saying there, like, strike a chord, because when you're talking about "who are they" first thing that came to my mind in the UK, at least, was the breast cancer charities that they are businesses.
At the end of the day, what is going to sell? What's going to make profits? I not naming names, but there are certain breast cancer charities. But the people on the boards are earning triple figure salaries. You know and there's people dying every day. Yet you can have advocacy group doing similar all the same work, actually lobbying, volunteering. And it blows my mind. But to get that they have to push that narrative. It's fluffy, it's pink, let's go for a run.
And I admit I was the same before I had cancer. I didn't know because you just you do what they tell you. We have so much information coming towards us. We need to filter what's relevant. So everyone is aware of breast cancer, like there's been enough done for people to know. That's the thing. That's the thing I need to be aware of. But then when it comes down to it, the.
They say then, like their mother or God forbid you or someone they know comes down with it, they're going to turn to the last thing that they remember to do with breast cancer. So it'll be one of those charities and they'll go on the website and they might use things like the language, like fight to survive, and da da da da da, they have to learn. They learn the language directly from that. Then they use it. It can work a lot of the time.
I know a lot of people I speak to hate the fight term, too, because it doesn't make sense. It's like what you fight in yourself, Grant.
But yeah, essentially, yeah, it boils down to that my brain is awfully cloudy.
You know, I think I actually talked for a long time and through a lot of things out there. So you unfortunately are dealing with my stream of consciousness as I was tackling that topic.
So I apologize to you.
For going back to it. I think, you know, seeing like women run marathons and pink, that's marketable, you know. Oh, my mother survived breast cancer 10 years ago. That's marketable everything. And then that's going to bring in. And, of course, you know, most of it does go towards things. I'm not saying it's a bad thing. All I'm saying is I feel like it could be done better.
It's just that.
Well, it is interesting because as you phrased it that way, sorry to interrupt.
As you phrased it that way, I was like, you're right. You know, primary cancer is more marketable because you can pitch a happy ending. And right now with secondary, although I will also say last night in the Clubhouse chat, there was someone who was talking about their husband who had survived 17 years with metastatic breast cancer.
So it's not that it's an immediate death sentence, but the fact is the end result is still there and that is a less marketable end result. But at the same time, when you're thinking about charity and research and and awareness, it it creates a true, genuine sense of urgency.
And it seems like that's the story that hopefully hopefully we'll start to see until I know in the States we're getting more attention towards metastatic breast cancer. But again, it's advocates and charities that are, you know, that are making that happen because the research has been sort of in that focus of primary.
Yeah, yeah, definitely good METUP UK, by the way, I don't know if you're aware is the sister group of MET UP which was made in America anyway.
So it's like, yeah, yeah actually came from you guys first, so I have to give you credit for that.
Awesome. Well, I'm glad. I'm so glad. And I know I have so many sisters and brothers with metastatic cancer that are I mean, you're just fierce advocates because you're right. You're fighting for the attention in the sea of primary cancer. And and unfortunately, it does feel a little bit like cancer research and advocacy is is kind of cobbled together. You know, you look at overall outcomes for women of color. You look at outcomes for men.
You you know, you look at subtypes and you know me. I'm ILC and lobular cancer being, you know, 10 to 15 percent of cancer diagnosis and so and also being different than ductal. So much so that we're starting to just research it. And so you have all these slivers of areas that need attention. And it really does feel and I need to find some scientists to come on on the show as well, because it does feel like it's really sort of piecemealed.
And I'm not quite sure where the direction is coming from for what it is that we're going to research next. But it is such an important topic. And you are also a success story because. And I think we kind of you know, we talked about it, but we also sped forward to a lot of other things.
When you had that incident in the car, you could not walk. And so I want to come back to that because there there are treatments. And even though you had the hiccups with the the wrong drugs initially based on the HER2 negative versus HER2 positive you now. Well, I'll just let you tell the story.
Yes. So I was lucky in the sense once all that was kind of sorted, you know, looking to move different oncologist's. All the rest of it had a wonderful secondary breast cancer nurse, so in the process of sort of moving over to a different hospital, a different oncologist, it was kind of like or used to be kind of stable at the minute. So let's not upset the apple cart and you stay under her. So basically this nurse who retiring now unfortunately for us, fortunately for her, the only secondary breast consternation Wales, by the way, she was wonderful.
So I kind of trusted her about if I needed anything. And the deal was with the other hospital. It was my oncologist for three years prior was that as soon as the sun came back and it wasn't quite so, it was questionable. I'd be straight back over there because I just didn't feel comfortable. But now, as things have gone, I've moved oncologist anyway. But in terms of going back to last year, I do have a tendency to waffle.
I am going back to last year.
The chemo was brutal. I think, up until July, I was very ill, I was very ill, I couldn't walk. I was in bed most days. My partner would like come up, bring me water. It would be a success story if I made it down into the living room to lie down on the couch then walk back upstairs to lay down. Just so ill. It was because the metastases in my bones were like mixed in with alarming nerves and things like that, so certain areas were numb. I was just sore, and then, you know, chemo's like it's just like I always say, it's like having a really bad flu.
After cycling one hundred miles, whilst being hit by a bus. Kind of what it felt like for me, this having that with bone met, which is really painful. Yeah. And basically with the oncologist I had it was whenever I said I got a pain, what's this pain? Was that it was all just fine. Take my morphine up your milligrams. And I'm like, I don't really want to keep up in my milligrams. So I kind of went against what he said.
And I'm not advocating this, but I felt within myself, I can do without this. So after the well, towards the end of chemo, I stopped. I started weaning myself off a strong painkiller called Pregabalin, and then I started weaning off the morphine slowly. And then around all this time when I was down to like the last couple of milligrams. I just went, I just cold-turkeyed it. One of the worst weeks of my life. I think I'd been on morphine since like end of January, so I just went "nope.".
Yeah, it was stupid. But, you know, like when you just so desperate to get off the drugs, like, I just. Yes. Drugs were saving me. And I take my Letrozole every day. I still have my three weekly Herceptin, don't get me wrong, drugs to save my life. But when it comes to those painkillers, those opioids, what I couldn't even see most days. I was I couldn't I couldn't quite they weren't working for me, all right.
For me. So I just stopped taking them. And slowly I started to walk downstairs. I walked to the car. I went for a drive. And it was literally every day I was like, oh, my God, I'm in the car today. The next day, oh, I walk to the front gate. It was just literally every day I'm happy to report like two weeks ago I went on four hour walk up the mountain.
So it's just this little little little little steps. But yeah, it is essentially just like you've got to do it, you're going to spend the rest of your life bedbound or. It did hurt. And I couldn't sit upright and I couldn't even lie straight, couldn't lie with my feet straight in my back straight. Now I can. Just every day you just doing a little bit every time. Yeah. Rome wasn't built in a day. Right?
I love that though, because that is, you know, active participation in our own care. And I also I'm not a huge fan of the opioids. And so I was kind of on the other end where I would just put myself through the pain before I would take them. And I remember one specific time where I was sitting on the couch and and Griff said to me, you need to take some pain meds. And I'm like, no, it's fine, it's fine. Because in my head, I was like, no, it's just it's like it's like fitness.
It's like anything else. It's going to hurt for a while that I'm going to figure it out. My body's going to adapt. And no, I took one and I needed it.
But it is that balance because you also you don't want to live in that fog. And I talked in one of my episodes just about the depression and the side effects from.
Yes, the pain medications are so important and the pain is sincerely present. It is significant. And I had never in my life experience the fatigue that comes with chronic pain, which is something that so many of us have. And yet at the same time, we're all trying to balance this quality of life in, with all of the tools that we have. But still being able to be present and live and do something like that, I mean, you have me in tears over here that you walked like that for for, you know, up a mountain, that the reason.
It's amazing. It's lovely.
It makes me so happy, so happy. So happy for you. But, you know, and you did that. And your doctor not that they're doing the wrong thing because they're trying to keep you comfortable as you go through something painful, horrendous and yucky. But that's that, I think, being in tune with your body and also with your desires in your heart and what you want out of this life, which is huge.
Absolutely, like just the trying bit at the end there, it is that I did need them at the start of the class. I needed them, hell, I needed them for five months. But at no point was that when the chemo was working and shrinking and they were in my nerves so much, there was no conversation facilitated. There was no you know, every answer was like, how are you? I feel a bit sick. Take more nausea. I was like, OK, more nausea medication. I've got a bit of pain.
Right. Take your thing. Take your morphine. It's like, yeah, but there needs to be a point where you going, well, if the cancer isn't, you know, maybe so painful that maybe we need to look at other things so, so thankful then for my secondary breast cancer nurse because she actually came to me with solutions instead of saying take nausea, eat small meals and practical advice. But yet going back to the apathy, I felt like it was apathy on my oncologists behalf of just like just take my meds rather than looking at my scans and thinking, well, you know, your tumor markers have gone down.
Maybe we can try this. I think what I'm trying to say is more of a proactive approach and all treatment, whether it comes from you or your oncologist, is always going to be a good thing.
Yeah, I know in the States and I was fortunate enough, I live near Seattle, so I always joke like we're the land of hiking and granola munching and, you know, we're all we're all tech hippies, basically.
So I had access to an integrative clinic where I had a Fabinho, which is a naturopathic oncologist who shared an office with a medical oncologist.
And even though they didn't always agree, it was for me great to have the perspectives of everybody, the recommendations of everybody, and then be able to take that, do my own research and sort of chart my healing path and is a naturopathic oncology thing in the UK?
It might be, but not that I'm aware of, that's never been offered to me all that is never something I actually do. Does anyone talk about, you know, you do get the odd odd I mean, really odd on-their-own renegade, the sort of like I'm going to do it my own way or whatever, but it's just not. Yeah, it would be interesting just to get all sides, because I do think it is just one narrative.If you like this. This is what it is.
Yeah, I think there's a real opportunity. And, you know, this is just me, I guess, on my soapbox. But such an opportunity to bring in nutrition, to bring in a supplementation to, you know, look at whole body health instead of just the focus on treating the disease, actually treat the whole person, I guess, is what I always say. Right. Like you're not treating a disease or treating a human, a whole human. And what does that entire environment look like?
Because face it, when we're diagnosed with cancer, our goal is to immediately create the most inhospitable, inhospitable environment for cancer to grow and to also be on the long into that bell curve. Right. None of us wants to be on the short side or even in the middle. We want to extend our life and our quality of life also matters as we do that.
So, yeah, so much opportunity for growth and advocacy and awareness in this area. And I'm so glad that so many of us and I will say this, too, those who are diagnosed with breast cancer, who do not feel like being an advocate, do not own it. You don't have to be out talking about it. You don't have to be on a podcast or in the Daily Mail talking about breast cancer. But if you are someone called to do that, your voice does matter and it does create impact and community for those who who are not in that space and for those who who will inevitably come behind us in this diagnosis.
So I want to talk about your blog for a second, I'm going to go back to that. So those for listeners, it's PinkIsNotMyColour.Weebly.Com. And I will put that in the show notes, like I said. And you kind of touched on that. You touched on total health. Right?
And, yes, your art, by the way, is so amazing for those that don't.
I will also say your Twitter account is fantastic because I love seeing your art out there, but so do you.
What do you have any sort of like final thoughts and recommendations and of course, any blog topic that you want to kind of touch on before we start to wrap up?
I think final thoughts and recommendations I will mention, again, just because I think it's such a great group like anyone that is thinking they have secondary breast cancer and they're thinking, I would actually like to do a bit more. I want to have a voice. I want have other than go beyond things like you can write to your MP, express your concerns about who would be active that way, help get in touch with MET UP UK.
OK, join us, we're always looking for more people. The more people we get behind this, the more we can put pressure on It's what Joe, she's the founder of MET UP UK shows like say, feet to the fire ladies, you've got to keep their feet to the fire. And I think anyone could. I was in that position last year. I was a bit like I want to want to do something. This isn't right. But I didn't know what to do.
I had a friend, Carolyn Gorman, and unfortunately, she was one of the people that I know that have died.
She became one of the 31 on September 22nd I believe and, you know, it was kind of by chance Joe got in touch with me. And she was like, oh, you know, you're going to Caroline's and bang. And then that set me off in that way. So I understand it's not easy to find these things. I was putting that out there now MET UP UK, if regular charities aren't doing it for you and you want an edgy group that actually does stuff Golab. When it comes to blog posts, things like that.
And I don't know, I wouldn't say anything to touch on in my blog. If I'm honest, my blog is more of like a thing for me. Selfishly, I keep it as my own little archive. That's what I like to put the things in the Daily Mail, total health,and my partner was on radio 10. Just so I know, right? This is what we said there, this is what is done for my own accountability. Because I'm terrible sometimes talking all fire and I need to know my context for everything.
So I've broken the blogs down into like stories. So it's literally like primary and secondary. And then it's you know I try to write the story, but as I was living it really descriptive. I'm a very visual person. I love to live in the present moment. So a lot of the story isn't so much like and then I went to hospital and then I was like, it's very much like, you know, about the atmosphere of the rooms.
And I kind of just really enjoyed writing them because selfishly, it made me feel like an out of body experience, like I weren't write about my own pain. I'm not writing about my own death. It's just like a way of expressing yourself and it's wonderful. And then people like it because people know me again in the updates from that. But then also I started hearing from people that I didn't know and they were like, I like you when you're like, oh, yeah, I really I really like your blog.
And I was like, people are reading that. All right. Wow.
OK, maybe I shouldn't swear so much and I don't know.
I say you just you stay true to you sis that's all I can say you stay true to you and your swearing is part of what, like, totally got me in there because I'm like, whoa, I didn't know this was a thing and wow. Yeah. Let's talk about it.
But yeah I guess I guess like the long winded answer, just essentially I feel like it would be an injustice, but just highlight anything in particular on my blog because it's so varied. It is litterally just the archive I work in project for all my secondary cancer effort starts with cartoons or whatever. So.
Yeah, and I love when you share your art on Twitter. So, so, so good. And thank you so much for being on the show today and talking about secondary breast cancer and metastatic cancer, breast cancer and also sharing with us perspectives from across the pond. And I know I have global listeners. And so, you know, when I talk about health care here in the States and even with you talking about health care in the UK, we still have listeners from all over the world as cancer is all people, all nations all over the world and including breast cancer, which a lot of folks don't know.
So tell me, though, before we finish up, what are your plans with your art?Because I keep telling you, you need to do a calendar, but.
I, very slow start with year this year. But I've been picking up a few things. You know, when is this podcast going to go out? I've been doing like a present for someone months.
OH, and so it'll be a couple of weeks, but, yeah, OK, I'll be that by the end of this month. So yeah, for those who are listening, we do a pre-record because I am at rural and don't have a great Internet, so we don't do these things live. So this will be the end of March.
Yeah, so, yeah, I can't say I've been working on that, but an individual together for her and drawing a cartoon, I do draw other things other than cartoons, but I need to pick that up again. I've been saying to a lot of MET UP UK girls, like, yes, I'll be back on it. I'm a terrible procrastinator. But once I start making cartoons again, they just come like weekly bam, bam, bam. But it's like when I stop it, that's when I know I've got so many ideas.
And I think that could be a hindrance sometimes isn't it is like when you've got so much content, like where do you start? This is nothing more daunting than a blank canvas or a blank piece of paper. And you like which one do I draw today? And, hell, I'm only talking about cartoons not, you know, conceptual art, but. Listen, if I was to do a stick figure, I would be overwhelmed with a blank sheet of paper.
So you just never know. So where can folks find you? I know we've got PinkIsNotMyColour.Weebly.com - is there any other place that you would want to send them to where they can see your art or just get a dose of Tassia?
Oh, i'm not really used to plugging myself. I guess my Instagram, just Tassia Haines, not many Tassia Haines in the world, fortunately or unfortunately.
One of a kind broke the mold.
Yeah, just my Instagram@tassiahaines and I've got like a little art Instagram at the site. Some people like to look. It's like no followers, nothing. Again, it's just like an online archive. It's more like realistic portraits of horses and I like Madonna, Madonna and things like that. That's called creeching_koshka is like creeching. And the koshka, it's like Clockwork Orange. Language nonstop I'm a bit geeky.
Nice. And then, of course, I found you on Twitter. So you've got Twitter out there as well.
Yes, I do have tweets. I'm kind of like new on Twitter I've had it for years, but I never use it and I realized it's a great place to get involved in the mass marches and mudslinging where it it wasn't good for me when I didn't have anything. So but I'm just living my life was healthy and my job was like Twitter, a lot of negative energy. I don't need that in my life now that I need people to know about things that are going on.
I'm like, yes, this is great. But yeah, Twitter, if you want to join me in nagging the UK government or anything like that, like, yeah, that's.
You are a model for advocacy. That's all I can say. And that's awesome. So, so good. We will have all of the links for Tassia and where you can find her, follow her and check out her art. All of that will be in the show notes or if you're watching on YouTube, it's right down below.
And I want to thank you for listening to Your Killer Life. Don't forget to like subscribe and more importantly, share, because the more we talk about breast cancer, the more we talk about metastatic breast cancer, the more open we are. In the conversations. I'm going to quote Joe and say keep their feet to the fire because and then I'm going to quote you. Oh, my goodness. I'm not going to quote you right, Tassia but, you know, apathy kills more. Was it more direct, more directly?
Apathy kills more than direct action, direct action is needed to kill apathy.
Yes, that. Thank you so much for that.
For more information about what you heard on today's show, check out all of the show notes and all of the links in the show notes or visit us at Your Killer Life dotcom. Don't forget to join us for a live after the show conversation on Clubhouse. And that happens Wednesdays at five thirty p.m. Pacific Time. And a little secret. We are going to be rolling out and after the show, live conversation on Instagram in the near future. So you'll be able to join us out there as well and until next time.
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Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.
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