Jocelyn

Jocelyn
Age at interview
31

Jocelyn lives with her partner and works as a public affairs coordinator.

Jocelyn received her diagnosis in 2012 when she was 29 years old. While Jocelyn was reading a book one evening, she happened to scratch her breast and felt a fairly hard lump. She went to see her doctor the next day. He reassured her that it was probably nothing but that he would send her in for a mammogram. For Jocelyn, what followed went really fast after this test. Within 4-5 weeks after feeling the lump, she had her mastectomy together with the removal of 14 lymph nodes. Chemo and radiation followed. She is now on a short medical leave as she is going through her breast reconstruction process. She will undergo more surgery to remove a little indent on the surface of her breast. She has not yet decided if she wants to put a nipple tattoo on her new breast. It surprised Jocelyn that the tissue expanders under her skin were even more painful than the whole operation to move the muscle and skin from her back to the front. Another surprise was that the whole reconstruction process requires more than one or two surgeries; Jocelyn expects to undergo about five surgeries in total.

During the treatment process Jocelyn wondered about questions such as ‘what is beauty?’ and ‘what does it mean to be a woman?’ Was she still a woman without her boobs, eyelashes and having lost her fertility? Jocelyn was unable to pay for the extraction and freezing of her eggs. This means that she has about 20% change of being fertile after she finishes her hormone therapy in about four years. Her menstruation did return after the treatment. Because of the treatment her body had gone through the menopause.

Jocelyn is now volunteering to provide free transport for other patients to get to their cancer treatments. During her own treatment, she benefited from  this service, to make the two hour trips to the hospital from her home which had  helped  give her partner a break from the cancer and the driving. Jocelyn participated in a clinical trial on exercise and a second trial to test a cancer vaccine. She has mixed feelings about the second trial as it involves a lot of input and effort from her side. The plus side of being involved in the trial is that she undergoes a lot of testing which gives her some reassurance. Jocelyn feels lucky to have good medical coverage through her work, if she had developed cancer a few years earlier while at another job she would not have been so lucky.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Videoclips

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I was reading in bed in my bedroom without a shirt on and I was reading my book. I went to scratch my boob and I felt a craggy, like a pretty hard lump, inside it. It was big. I scratched it and I was like “What is that?” So I woke up my partner and I was like “What is this?” and he was like “Well I don’t know” and I went to the doctor the next day. They got me in right away and I was 29. So he was like “That’s kind of strange”. He said, “Oh it’s probably nothing because of your age because it’s so unlikely. But if you’re going to worry about it we’ll put you in for a mammogram and then we’ll see.” 

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It could come back. I do think about it. You can’t, now things are different. Before when something was wrong with me I’d go "Ah it’s fine it’s nothing." Now something’s wrong with me I go to the doctor right away and I’m like "What’s this thing." I had a mole removed, I would have never, again, I have a mole who cares, and now I’m paranoid. I react immediately. It’s... which might be a good thing because then they’ll find out if something’s wrong with me but they can’t tell you. They can’t actually tell you don’t have cancer anymore. They don’t know. The only way that they can really know is if you have blood cancer, because they can take the blood out and test the blood. But with tumours, they got to find them first and then biopsy them. It doesn’t work that way. I’m really worried about recurrence, I don’t know what to do if that happens to me, well one slice of salami at a time. Right now, I’m alive and I’m doing whatever I want and I’m going to party and work and pretend... you can’t control the future, something else bad could happen to you.

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This all happened at the beginning right after I was diagnosed. It moved pretty quickly. They sent me to a fertility doctor because I was 29, and I had 4 days to decide what the options were. You could either freeze your egg, they also had these pills that would make a barrier in your womb but they were supposed to make you a lot more sick during the treatments. And then there was another one that was only available in the States, which I might have done, where they put eggs in your arm... they put it in your arm and implant it here later it’s weird. They’re not covered, even if it’s a medical necessity it’s not covered.  Do you know how much it costs to freeze eggs, to extract them, freeze them? I don’t know, but I think just to extract them was about $ 4,000 and you have to pay for freezing and then there’s in vitro fertilization treatments and that doesn’t necessarily work. No! I wasn’t going to do that to me and my partner.

So I have a 20% chance of maybe still being fertile after I’m done my hormone therapy, which will be probably in about 4 years. I’ll be almost 36, by the time I could trust or trying. And that’s not old it’s just, it’s just not ideal. Maybe not for a first child, well it wasn’t my choice I guess that’s what it was. I probably would have waited that long anyways but we’ll see, I don’t know.

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Well there’s a group, I’m actually the secretary and I’m on the Board for a charity group, that we have here called Road to Hope and they drive patients or clients, I guess we call them, to their cancer treatments and back for free and I actually just drove a lady last Friday to a radiation treatment. It’s the first time I ever drove because I work full-time. It’s mostly retired people that are the drivers. They’re all volunteers and they drove me to lots of my appointments, not all of them, but I had to give my partner a break, you know? And after a while I got so sick about talking about cancer between each other. His life doesn’t need to be involved around my stupid cancer, like taking over everything. Does he have to come with me to every single freaking radiation treatment? I also stayed in the city with my sister for a bit during that time because you have to go every day for a week, go back home on the weekends but the driving program helped a lot. Most cities have that.

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When I first did reconstruction, I did…Okay! This is a real boob, this one has a fake one and I’m wearing a little paddy here (pointing at her chest). When you get a mastectomy, there’s nothing there. It’s just like a weird warped looking scar. It had a weird little cleave in it and it was just completely flat. And then, they put a tissue expander inside. They put this hard balloon in and every week I go to the surgeon and they go “Whoosh” and it fills up. It’s high, I could touch it with my chin because then when they put the implant in, it’ll come down a bit. That was so painful. I’ll never, I would never get a tissue expander it hurts. Maybe some people are different but I guess the area was just damaged already. It was so screwed up from the radiation and so screwed up from the surgeries that it hurt a lot. Then I finally had the implant put in and because I had a weird warpy scar, which happens sometimes, it wasn’t boob shaped. It was like  (indicating the shape with her hand). So 4 weeks ago he, my surgeon, who’s actually a really good surgeon, it’s really precise, he cut out the scar… looks like an eye like this. And he cut it out and he cut a piece of muscle and skin from my back. He brought it out front and he sewed it up. So there’s no weird scar there anymore. He was concerned about scars, I don’t care about scars, I care about shape but I still have an indent here and he said “I wasn’t ignoring your weird indent, there’s probably…we have to do some fat grafting." You can’t make a breast out of nothing. They can do really amazing things. Part of the reason that breast implants look the way they do is because they’re sitting behind a real breast. There is no breast there, it’s like putting a boob on your back or your knee and trying to make it look like the other one.

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I bought a book. I read another book called Intimacy After Breast Cancer. Because it’s an issue and no one talks about it, it’s a big deal. Part of the reason I feel so sorry for my partner, I was 29, he’s 29. I couldn’t have sex, who wants to have sex with chemo girl, like no one. I tried talking to my doctor about it, but he’s an old man and he doesn’t even... I had to go to a lady to do my pap smear up, at the hospital here. He’s, I don’t think he’s the right person to talk about it and what is somebody going to tell you. I did a little bit of reading, I mean, I did read that book. There’s just a lot of it too, is mental, there’s a huge, when you don’t have breasts, it’s pretty daunting to feel attractive when you have incredible scars. I don’t have... my legs, I have short fat little legs. My legs were not what is attractive about me, it was actually my chest, I had a nice looking chest... cleavage, I don’t have that anymore.