Iceni

audio
Age at interview
68

Iceni (68 years old) worked as a family counsellor and is now working as a writer. She has three grown children.

Iceni received her diagnosis in 1997 and had a lumpectomy. After this, she learned that not all the cancer cells had been removed and that she needed chemotherapy and extra radiation.  In 2003 she felt another lump in her breast where the scar tissue was. This time she was treated with a radical mastectomy and hormone therapy for 6 years. Discovering the recurrence was a frustrating moment for Iceni as she wished that her first treatments had been more thorough. Even though it has been more than 11 years since her second diagnosis and treatment, she is still living with the consequences of the illness. For example, Iceni is still searching for an affordable bra with a prosthesis, something that is not covered under medicare in in her province. She has only one bra and is unable to afford another one herself. The bra’s esthetical function is much less important for Iceni then the physical support she has from the bra for the rest of her body.  It helps her to maintain better balance with her movements and she feels more like a normal person in public. Iceni’s body has changed to such an extent from the radiation treatment that she notices the damage to her lungs and has breathing problems. Iceni also has experienced pain during intercourse because of the damage to her sexual organs. As a result, Iceni’s relationship on an intimate level changed. This is a subject that she finds difficult to bring up with health care professionals as it is painful and embarrassing to share this. Living in a rural area is another challenge as costs may increase rapidly if she needs to travel to services, and at the same time only limited services are available in the area where she lives. Overall, however, Iceni is a strong self-reliant woman that enjoys sharing her experiences with laughter and jokes.

Time since diagnosis
11 - 20 years
Phase of treatment
Remission

Audioclips

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So they decided they wouldn’t give it to me the second time so they put me on that Arimidex for 6 years and there’s no studies on that either. It’s usually  five, and I was on it for six and some doctor came down from (city in Alberta) at the Cancer Clinic and talked to me and he said, “ What treatment?” and he says, “No stop.” He says, “Stop, Yeah don’t take it anymore.” “So okay good for me,” I said because did have a lot of side-effects, you know, diarrhea isn’t pleasant and vomiting and the shakes and the headaches and all sorts of stuff.

Interviewer: How did you manage to continue if you had so many bad side-effects?

I’m very stubborn and you know I thought well, if this is going to stop the cancer from coming back I’ll go through it I just got on with it. It was mainly in the morning when I took it but I was in pain and distress for 6 years. It’s a way of life. You can get used to anything and maybe I was too dumb to go and say I can’t take this anymore but no I just put up with it.

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Well like I say, I’ve got some very, very good, dear and close friends that would listen. But then you don’t want to feel like you’re whining. “Oh I feel ya, ya you know” because I’m a very private person in that respect, unless I’m lying on the floor in agony or something. But another thing as I say my, acquaintances, don’t walk across the street when you see me, because some people would and some people stopped coming. My son couldn’t visit me. Every time I phoned him he had a cold but he was crying this big, tough guy and I said “What’s…” “Oh allergies.” And he wouldn’t talk to me. He wouldn’t visit me, he couldn’t face it and I understood that, of course, but some people might have been hurt but I understood he couldn’t face it. He could not visit me. Then I would have friends walk to the other side of the street because they don’t know what to say. Just say “Hi how are you?” I’m not going to stand and say “Well I’ve got this and I have that and they cut this.” Just show that “How are you doing?” But people are scared of it and they’re afraid of it, afraid of sick people and scared of cancer because people think oh if she drinks out of that glass I’ll get it. There is still that attitude, that if you touch somebody or breathe some, they’ll get it. What my other friend who’s had… she got breast cancer, now it’s in her bones, it’s travelling, she goes up to (name city in SK) for treatment she said “You know I don’t know.” I say “I know” but yeah I had a lot of support.

My children they didn’t understand what I was actually going through, pain. They were very impatient, got their own lives run, run, run. Not that they wouldn’t have helped me but after a month of…they didn’t say but I got the impression, “Well get on with it will ya.” But working, children of their own, busy lives. I stayed with one of my daughters for a while but it wasn’t home. I wanted to be home on my own. It would have been nice to have a nurse but not the family. They handled it well, I’ve never talked to them about it really, I know they were upset, like I say, my son went to church and that’s so funny. He’s not a church goer and when I found out, I thought that was hilarious. That’s the funniest thing. He’s never been since either. He had tea with the old ladies or something, he didn’t tell me but I was getting told. I didn’t say anything but that was funny.

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Well treat them as you would normally treat them but help them out more without having to be asked. Don’t be afraid to lift something for them or carry something because independent people might be struggling and wouldn’t say “Can you help me with these?” Just be aware that they can’t do the things they did before. Any little help is much appreciated. You don’t want to keep saying “Can you lift that? Could you get that?” Just think. Just try to see the other person’s point of view, how they feel.

I’ll forget that you know. I write things down a lot make myself notes but another thing don’t get impatient with your family. I mean your family… don’t get impatient with that person, even if they look well and sound well they might be feeling horrible inside because they can’t lift that bucket or that bag and they struggle with it. Just help or ask “Is there anything we can do? Can we cut your grass or can we do that?”

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Yes, I thought they should have taken my breast the first time, that’s what I thought. I thought "Bloody hell!" That’s what I thought, if they’d only... because I was prepared for them to take my breast. I thought I would lose my breast, I was all prepared. The second time I wasn’t prepared, I was more upset. I thought "Oh it’s come back." I thought they’d just take another lump out but they said we’re going to take the whole thing and under my arm and everything else. So yes, I was mad about that.

I was pissed off to be honest, that if they’d only bloody well done that first. And it was shocking that I did get cancer again and then to think I had to lose it again, I thought "Gees!" So yes, I was more upset the second time.

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I feel very strongly about that but I feel very strongly that women should have a voice in their treatment. They should know more in everything. They should know and not be afraid to ask the doctors questions. They’re not Gods, they might act like some of them superior but they’re not. No! So they do intimidate people especially when you’re sick. And you don’t want them to be bothered or you’re scared to ask. So I would advise breast cancer, or any cancer patients, to have a family member or good friend always with them so they can hear or tape record it. But always have somebody to say “She doesn’t feel well.” You’re too sick, you want to get somebody else to get in bad with the doctor rather than you get another needle. It’s what I’m saying, you don’t want to piss the doctor off, so you’re not going to ask questions that you think might be irrelevant or whatever. So if you’ve got somebody with you, like a daughter or a friend, to say “Well she has to know.” That’s not afraid to ask.

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But, sex no. I don’t have sex, no because some... there was some damage there.

Interviewer: Oh so you had to stop?

I’m celibate yeah! jeez...

Interviewer: Because of the treatment?

Yeah because of yeah, which is horrible because nobody tells you that. It doesn’t stop you from being loving and doing other things but not actual intercourse. I remember when I had my pap test a year after, and she said "Oh intercourse is out." I said "What!" She says "No you can’t." I say "Why?" She says "Because you’re a mess in there." I say "Well what do you mean?" She says "Well you must have had radiation for cancer down there." I said "No." So I never got to the bottom of that, how that happened and it’s too painful.

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I was on Arimidex for 6 years and I had nine bad side effects out of the 11. It was horrible. Finally some doctor came down from another province and said "Stop that." But it was to kill all my hormones so I feel like I’ve aged 10 years for every year because no estrogen means arthritis and all sorts of rapid stuff that you get when you get older without your ovaries or whatever.

If I hadn’t had those anti-hormone pills for 6 years I wouldn’t feel so creaky and achy and wrinkly as I would have done had I not had those. I would have sort of aged gradually I think, and maybe have aches and pains gradually because I would have had estrogen.

That drained me dry of estrogen that was the worst part. I could put up with the cancer and that, but it was this premature ageing with no estrogen. Women need estrogen, some of these movie stars they’re 80 and they’ve got estrogen still because they’re getting it. And so, I think that was the worst part. That was rapid, within about a year of being on those pills, I was aching and out of sorts and hurting and stuff. And I realize that I’m ageing as well but there’s a difference.

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I’m not the same person that I was before I had cancer, so I know it puts a heck of a strain on your body. I don’t think you recover from that. You recover from the cancer but not the stress and strain that was on your body because I’m not the same. I’m older, of course, but I don’t think that did me any good having that. I put weight on because I wasn’t doing what I normally do; dancing and everything else. It certainly slowed me down. I’m still running around doing... I’m in the drama group, I’m in the line dancing, I’m in the gardening club, I’m in all of that but not as much. I used to like to travel and camp and everything, I don’t care for that now. But yeah I wouldn’t recommend it to anybody.