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024: When Fear Kills... let's talk about Secondary Breast Cancer

Updated: Jun 22, 2021


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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.


Tassia Haines:

Blog: https://pinkisnotmycolour.weebly.com/concept-art.html

Instagram: https://www.instagram.com/tassiahaines

Art Page on Instagram: https://www.instagram.com/creeching_koshka

Twitter: https://twitter.com/TassiaHaines


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Transcript

Tammey Grable-Woodford

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.


Tammey Grable-Woodford

Could you tell us a little bit about you?


Tassia Haines

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.


Tassia Haines

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.


Tassia Haines

So.


Tammey Grable-Woodford

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.


So.


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?


Tassia Haines

Yes, that's right.


Tammey Grable-Woodford

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?


Tassia Haines

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.


Tammey Grable-Woodford

You are in the right place, you don't have to apologize for that.


Tassia Haines

Cheers. Cheers to my friend. The thought that breast cancer. Can you help me, Tammey?


Tammey Grable-Woodford

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.


Tassia Haines

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 so