Shelley

Shelley
Age at interview
48

Shelley (48 years old) is an educator and now works as a director for the Ministry of Education. Shelley has two young adult daughters and a son.

Shelley received her diagnosis in 2012 and will soon complete surgery to reconstruct both breasts. Shelley first suspected something was wrong when, as a trained Reiki master, she was helping a friend with Reiki treatment. Shelley and her friend both had a burning sensation during these treatments. Shelley in her right breast, and her friend on her back and side. Her friend decided to have a check-up and was eventually diagnosed with breast cancer. Shelley discussed her symptoms with her doctor it was decided that she would have a mammography as well. The mammography showed a little something and Shelley was asked to return in about 3-6 months. After 3 months Shelley decided that she had enough sleepless nights and got a second mammogram done. The next day she was called in to see the doctor who told her it was cancer and that she needed further testing. Yet, based on the results of the biopsy, she was told that the lump was benign. This good news did not reassure Shelley as she continued to feel an itch or a burn in her right breast and asked for more testing. Her doctor agreed to do an MRI and this confirmed that it was indeed breast cancer. Shelley choose to undergo a double mastectomy and immediate reconstruction through a DIEP flap. Even though she encountered problems with the reconstruction, she still encouraged women with breast cancer to choose the approach that they feel is best for them. It has been about three years since she told her teenage children about the diagnosis. Her children recently told her that it was ‘awesome’ that they had been encouraged to share the news with friends and family and to not have to keep it as a family secret. This is one of the reasons why Shelley wanted to share her story as she believes in the importance of sharing information and learning from others.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

Videoclips

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The other treatment that has been very successful with me has been acupuncture, to help manage hot flashes. Being jolted into menopause at 46. I’m still suffering the side effects of hot flashes that could go on throughout the 5 years of hormone treatment, but it does help. I find it helps immensely. It works for myself and for other patients I’ve heard it doesn’t help as much. But once you find your niche it’s a good thing and the doctors have been very accepting of the lymphedema massage therapy, the acupuncture, the Reiki treatments.

So I’ve done Reiki and I continue to do Reiki on myself as a trained Reiki, we call it a Reiki master, and I have success with it. It’s very calming. I also do yoga and the breathing meditation through yoga is phenomenal. I’m not where I used to be in yoga and all these poses. I’m lucky if I can get up from a downward dog now. It’s just, it’s different. So, again we’re fortunate enough to have cancer yoga classes that focus a lot on breathing and exercises to help with muscle and joint aches and pains and the muscle cramping that is often a side effect of chemo or the hormone therapy that I take. All these tools and toolkits and compression garments that I’ve been equipped with, helped me to get back to a normal life or a more new normal life is what I should say.

 

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And yet we’ve been able to work through that thankfully and that’s important I think in any relationship. And it’s not easy, it’s not easy and it’s not easy to talk about because it is a vulnerable topic. That is one area there’s not a lot of resources on to be honest and I don’t even know if I’m doing it justice in talking about it here. But talking about those feelings of why you feel vulnerable or unattractive or you’re scared that your husband won’t accept you with the new change, and having him express his fears to you as well is so important. You can’t keep that inside. And it was hard to initially talk about it but things have been great and we’ve just been fortunate in our relationship. Solid enough to not only respect each other physically but just emotionally. If you can’t or you don’t have that relationship to communicate, I would suggest you’ve got to find someone who can help you communicate on those levels. If there’s ever a time you need that extra touch, that extra hug, that extra level of intimacy, it would be in the post-recovery when you’re not feeling attractive at all. You’re not sure, your confidence has been shaken to the core, on that level.

Interviewer: Could you give me an example of your husband’s fears as well?

His fears were that I would not want to be intimate with him anymore. I mean, we’re young or we consider ourselves young. And we are intimate and we enjoy being intimate with each other so it’s, he knew my fears and he could see my fears. He could see my, not my disgust, it wasn’t a disgust, that’s not a good word, my... trepidation with the changes; the weight gain, the hair loss, all of these things, right. All of a sudden, I have no breasts, scars, swollen in areas I didn’t know I had areas to be swollen in, hysterectomy all of that, all of that comes down on you. You just think all of these changes. What did I read. I read loss of estrogen may result in loss of sexual desire, it may result in vaginal dryness, it may this, it may that, talk with your doctor.

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Even chemo brain, that was something that you read a little bit about. I did not anticipate... I thought "Oh, I won’t get chemo brain, I’m always reading, I’m always doing this." I couldn’t remember the word vacuum, I was describing the machine that picked up dirt off the floor. Little things that you take for granted every day, I couldn’t put together in a phrase... that was frustrating at times. So again, I’m at physio and I said to my therapist... she asks how things are going and I said "I think I’m losing my mind I can’t remember things, things that I’ve done every day I’ve taken for granted." Just the fine motor coordination things as well, not just the verbal. I would look at things going "I don’t know." When she said "Oh, you need to talk to so and so or come to this meeting or here’s a resource" It was like "Oh thank you I’m not losing my mind." This is part of this treatment but when you can’t find information on it... wow. 

It scares you and then you start thinking is cancer in my brain? Because you’re in a vulnerable place where you have no control. At work they were very good with my chemo brain and I came back and I said I’m not back with an A game. The one I had before I left, I’m hoping at best it would be on my B, C or D game. I’ll let you know. So everybody was great, they knew hot flashes would hit me hard. At first it was uncomfortable for me and for them, you know, you’re in a suit, you’re at a table and making decisions and whoosh! You are beet red and you’re like pour the water on me somebody. It’s become more of a joke now, everyone’s at ease with it. My brain thoughts, my speech patterns have come a long way compared to where they were when I started the back to work. Just again, it’s the routine getting back into the swing of work life and home life has helped me to recover as well definitely.

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Okay, so back in 2011 I was sort of dabbling with Reiki. Reiki is a transfer of energy. It’s an alternative style of therapy and I was working on myself, family and friends; and I was working my daughter’s friend’s mum’s back. She was having some pain and every time I was working on her back or her side she would get a burning sensation, and I would too (experience this burning sensation) on my breast. We kind of joked about that and I said, “You know what? Go get checked out,” and she did and she was diagnosed with breast cancer.

So my physical was coming up that summer of August (2011) and I had been working with her and giving her Reiki treatments throughout her chemotherapy and I had mentioned (this burning sensation) to my doctor. I said, “You know I do Reiki and every time I’m working on this patient or any time I’m working on myself and I pass my hands over my right breast I feel this sensation, like I could breastfeed somebody, kind of that tingling before the milk is let down sensation.” She said, “Oh you’re young, you’re 45, don’t worry about it.” She said, “It could be anything but let’s have a mammogram.” Like we couldn’t feel anything, I couldn’t, she couldn’t and so she said, “Well we’ll get a baseline mammogram.” So I went and I got a call back from it and I thought, “Oh boy what is this?” I went to the doctor for the results and she had told me not to worry. There’s a little bit of something but not to worry, come back in 3-6 months. But my vitamin B was low and my vitamin D was low so we started on that kind of (vitamin) therapy. I’m not overweight and I’m fairly active, and I eat fairly well. But she was pretty confident, as was I, that there was nothing.

But we decided on a 3-month retest with the mammogram because I thought I can’t go six months without sleep, let’s go 3 months. And so I went in November and the very next day I had a call back. I got the phone call to come into the office, which again, I thought, “No big deal, they must have found something else or just the results.” I was not expecting “you have cancer”. She told me that and when I heard the words “you have cancer” I can truly say I don’t remember much else.

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More to the fruit and vegetables. Yeah, I still have a hankering every once in a while for red meat but, we talk about balanced diets. I’ve talked to nutritionists, I’ve read many books on the benefits of a vegetarian diet or the whole grain diets. There’s so many different avenues. But I think for me what it comes down to is a balanced diet, and ensuring that the fruits and vegetables are not ignored and the water intake is so important for me to help cope with some of these new aches, pains, muscle cramps and things like that. The family love it. At first they weren’t too sure about the green drinks, I’ll be honest with you, but once they looked beyond the colour, it’s been a good thing and all of them juice. All of them make smoothies, and it’s a fun thing to do because what do we have. It always used to be, dad’s making the smoothies expect everything and the kitchen sink to go in it. Everyone has their vices and the green has been a staple so that has been good.

Even, with your, or with the way we look at buying groceries has definitely changed too. The grocery list, and no my house is not junk food free by any means. I probably still eat way too much junk food but I find if I say absolutely cut off, "No" I will crave it. If I have it in the house, it’s like "Okay it’s there if I want it, I don’t know if I want it." It’s just, it’s different. I don’t bake as much as I used to, if I do, it’s a lot of whole foods, different recipe books that I’ve come across. There’s so many wonderful online resources for making everything, whether it’s gluten free or just on a vegetarian or a vegan diet. Whatever is your fancy, but there’s many good things out there and I’m very lucky.

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I gave up laundry and dusting and a few household chores to the kids and they’re doing such a good job they can keep it. But it’s just... I don’t know how to describe that difference. And yet, it’s not so different from the normal. It’s how you approach your daily life at home and at work that was different for me. Things that I used to think were important are now secondary. My most important thing right now is my well being. If I’m not taken care of, I can’t take care of my husband and my kids or let them take care of me. I’m going to be rundown, it’s going to be tough on everybody. Before I was the last person I would think about. It was my family, then work, the dog, the neighbor's dog then me. I’m up on top and I’m okay with that. I don’t feel bad about that.

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So I had to learn to open up over the course of 16 chemo treatments to let other people in. It wasn’t just me fighting the cancer, it was me and my family; it was our friends, it was relatives, it was friends of friends, people who wanted to reach out and help.

Another area that I had to really open up was letting people to help me outside of sitting and helping me get to and from chemo. You take a pride in your family and being able to look after them and provide for them and when your world gets shaken up and you’re unable, physically unable, to do some of the things that you could do people want to help. They just don’t know how. And they’re afraid to ask and they might want to stay away. We started a family blog because so many people wanted to call or have us e-mail them and we thought how are we going to manage this?

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There’s a level of comfort there that I would always find in that. But the compassion and the empathy was second to none throughout my journey and when I did encounter somebody who maybe was having a bad day for whatever reason it was tough. I found that really tough on the recovery road and nobody’s perfect. Nobody, I’m not perfect nobody’s perfect, but whether it is, I guess it doesn’t matter what the patient is diagnosed with or dealing with to have the healthcare providers know that we want to get better too. We don’t want to be lingering in your offices or on the hospital wards or anywhere else. But we just don’t know and it becomes, again, patience and understanding and that compassion to help; to help us and allow us to help them in treating us. So patience would be is a virtue we’ll leave it at that.

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The kids all got home from school that afternoon. We sat them down. They were teenagers, first year university and two in high school and I let them know that I was diagnosed with cancer that a biopsy was going to happen and that’s all I knew. Lots of tears, lots of questions. The one thing I wanted them to know was that it was absolutely okay to text their friends, to let their friends know, to talk about it with their friends’ parents because at that age friends are their life. And then, they worry about themselves. Parents are somewhere down lower on that priority list. I didn’t want them to be scared in silence or alone and I wanted them to be able to ask me and my husband questions. That was something my husband and I had spoke about before we told the kids. Now that it’s been almost 3 years since that initial diagnosis, we’ve talked about how we told them and whether or not we should have said talk to your friends. They thought that was absolutely awesome that they didn’t feel they had to sneak and it was a secret that the family had. Their friends were open to ask us questions as well. It just so happened with my daughter going into nursing, and for her friends in nursing I became their test patient in many regards. It was a good learning experience but we always said "If you don’t know don’t be scared of what you don’t know, ask and if we don’t know the answer we would find the answer."

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The hardest part I think during that time was the waiting and knowing you had this cancer growing inside of you and you just want it out. You just want it out, but that sensation, it was always kind of lingering in the background, that burn that itch and, of course it’s on your mind. You don’t know what you know, what stage, how serious, is it located just in the breast, your mind goes everywhere. 

The 3-month period was tough. It’s always the idea that you might have something wrong was always lingering and I tried to find the reassurance that, “Okay I’m young, I’m healthy, I’m active, I don’t smoke, I never smoked, I should be okay, right? Cancer’s for old people.” It is not for old people, it does not discriminate against age, size, race, religion it will hit you hard and when it wants. And so the waiting period, I kept on moving and kept on doing what I do. It was the waiting period. Once it was confirmed until action started to take place that I found the toughest, as did my family.

Interviewer:  And that was also the period you didn’t know exactly which kind of cancer you had?

Correct what stage, what grade, is it spread, is it the primary source? All of these unknowns and yet it took time to get those answers but it was difficult and it was difficult on the kids, they didn’t want to leave my side. My husband took a leave from work as well, and that was all hard to get used to because you want to see them, continue on normally and you can see the pain in their faces and the stress level around. And you try to make it normal and we grew as a family, we really have a new level of respect for each other. The relationship with the kids and my husband and I grew during that time, that’s a benefit of something really awful that I’m fortunate enough to say that we continue to be a very close family as a result of it.

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So once that initial shock was over the next was the biopsy. The Breast Cancer Clinic phoned almost immediately to have the biopsy. During that biopsy, the doctor was having a hard time locating the lump it was so small. I believe once the autopsy (results) came in it was 1.2 cm and that initial biopsy came back benign. But what I knew was that as time was going on, and once it was confirmed that the sensation, that tingling that I had when I was doing Reiki, that initially kind of started this conversation, it started to become a burn. I never did feel a lump but I always had a burn or an itch on my right breast and it just seemed to intensify with every week as we were waiting and coming up to this. So when the biopsy came back benign I had said that to the doctor that I should be happy. I remember saying to her I should be happy. I’m not happy. (Added by Shelley after the interview: The radiologist who performed the biopsy also indicated she didn’t think she located the lump because it was hard to locate. She strongly suggested I ask for more tests too.)

Because she said Merry Christmas, Happy New Year it’s benign and I said hmm something is wrong and I listened to my body and I said that to her. I said, “I need something more,” and she did thankfully book me in for an MRI (Magnetic Resonance Imaging)* which happened about 2 weeks later and that did confirm ductal carcinoma throughout my breast and one invasive carcinoma, ductal carcinoma that resulted in a recommended mastectomy; and another biopsy, which they pinpointed right away when I went in for the second biopsy.

  • * MRI: Imaging test that creates a 3-dimensional picture of the body’s internal structures using magnetic force and radio frequencies.

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I didn’t know I had lymphedema, I knew something was wrong and I would say that to both my general practitioner as well as the oncologist. My arm feels so heavy, my back, my front feels like I’m carrying water and to find out that it’s not just in your mind and initially it was a side effect of surgery it will get better it will get better, but to have it validated and say, “No, we can help you. We can reduce this feeling, we can help you manage it and learn about it.” has been very empowering because I would think it would be quite overwhelming as initially you don’t know what to do. You don’t know. Is this cancer coming back? Is it not? Why am I feeling I have another arm growing out of my armpit. The sensation was overwhelming. Then to find out no this is valid this is, this is a side effect of treatments again was empowering to know that there are things you can do and things you can do differently to live with this condition, to manage it and hopefully reverse it at times and you know find that normal again. Yes that has been outstanding.

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I need to stand up and move every 30 to 45 minutes to prevent cramping in my torso and so that the lymph fluid doesn’t start pooling in parts of my body. So it’s important for me to exercise and I have bands and balls here at work and they provided me with a sit/stand desk so that I can continue my work. They’ve been very accommodating but it’s been a learning process.

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You know I got copies of all the reports and they were reviewed. My GP (General Practitioner) reviewed them, my oncologist reviewed them, I asked questions and I still am uncertain with the staging, the stage 3 that came with the cancer. Because, all the anecdotal notes and all of the other tests are early stage, small carcinoma, very small and when I look at what is advertised as Stage 0, Stage 1, Stage 2, Stage 3, Stage 4 in terms of size, spreading and lymph nodes, etc., that puts me at a Stage 1. So I’m confused as to why I’m a Stage 3. And I ask that, from time to time, and I get an explanation but I still don’t understand it. So maybe someday I will I don’t know, but I’ll keep asking, because maybe there’s something that I’m just not hearing, which could be.

Well initially, Stage 3 scared me because that’s one more step to Stage 4, which is metastatic, which is closer to death and I’m not ready to die. I have to say that right now, I’m not ready. I’m not going down without a really good fight. I plan on being a grandma, hopefully not for a few more years yet and see my kids get married so I can be a grandma and be involved in all of that stuff. Stage 3 scares me, it truly does scare me and I don’t know why. It’s a number. It’s like a dress size. Yeah I’d like to be a 4, well I’m not going to be a 4 but I like the dress so if I could pick what stage, yeah I’d love to be a Stage 1, and yet there’s no guarantee at any of these stages.

There’s no guarantees, that just because you had Stage 1 you won’t have a reoccurrence. I get that part and that is something my oncologist has said. Just because you’re Stage 3 doesn’t mean you’ll have a reoccurrence. It’s due to blah, blah, blah, blah. Nice. Okay. Thank you. I’m being totally honest here and you know, you laugh at it because, yeah you know the number. And is it because society has always put emphasis on a number, on your weight number, on your dress size number, on the staging of your cancer number? I don’t know. I don’t like Stage 3. I’ll live with it, of course, I don’t have a choice just like I’m going to live in my size 0. It is what it is and if at the end of the day I can say I’ve done the best I can with activity, with my nutrition, with my mental health, with my spiritual health, and if a reoccurrence comes back, I’ve done everything I feel I could do. Have I gone radical? No. Am I going to? No. I’m trying to balance here and I hope to heck it doesn’t come back. But if it does, I don’t want to have any regrets about something I did or didn’t do. And at this time I don’t feel I have those regrets because, as I said, I’m grateful. I’m trying the best I can at this time to do what I can do and I will do anything to be alive and to grow old and hopefully not miserable.

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I’ve been very open at work with all of the treatments, with the reconstruction that I’ve undergone here recently. We have many, many jokes and laughs about different things but people care, they truly do care and when I’m not feeling right for whatever reason, whether it’s tiredness, a new surgery is coming up or medical appointments that impacts me. And even though it’s a 6 month check, that week before I’m on edge and I don’t anticipate anything wrong but you never know. I didn’t anticipate cancer in the first place and I let my staff know as I do with family and friend of my up-coming appointments: “I’m sorry if I’m on edge I’m going to say sorry now in case I snap at you I don’t mean to,” they’re very good. I’m thankful, I’m so thankful to have relationships with not only my co-workers but my family to say “Yeah we know you’re maybe stressing a little bit more because of an upcoming appointment or test or whatever.” And they’ve been good, they’ve been good. Would I have asked for that in my previous life? I don’t know if I would have said to people “I’m not feeling good today leave me alone.” Or “I’m sorry.” I would have… I don’t know if I would have.  I’ve had to learn to open up that side of my life through this to improve work relationships, to improve communication and to let them know where I’m at on a daily basis.