Karen - Interview 30

Age at interview: 48

Brief Outline: Karen was diagnosed with ovarian cancer and had a full hysterectomy between chemotherapy sessions. Now in remission, Karen has discovered she carries the BRCA1 mutation.

Background: Karen is a barber. She is divorced and has 2 grown up children. Ethnic background/nationality: White Caucasian

More about me...

 Karen started to feel unwell a year ago and was given tablets to stop her needing the toilet all the time. After an operation for a prolapse, Karen started to feel worse and she was eventually diagnosed with ovarian cancer that had spread to her lymph nodes, right lung and diaphragm. The treatment was four sets of chemotherapy, followed by a full hysterectomy and two further sets of chemo. Karen is now in remission and describes how she was determined to get rid of the cancer by remaining strong and positive throughout the treatment process.

Since then, Karen has found out she has the mutation 2 on the BRCA1 gene, by taking part in the GCapp study. Karen was pleased to find this out as she now knows she has a higher risk of breast cancer and ‘forewarned is forearmed’. She is also pleased that her daughters will be able to be tested and monitored more closely in the future. Karen strongly advises women to follow up on any vague symptoms that could be related to ovarian cancer including a loss of appetite and unusual bowel habits.

 

Karen was unaware that Ovarian cancer was prevalent in Ashkenazi Jewish women and was shocked when she was diagnosed with it.

So, you know, it’s a shock. You never ever in a million years think it’s going to be you. And I didn’t know until I got it and started hearing that this one’s got it, and that one’s got it. People that my friends know, you know, I wasn’t aware that it was actually quite prolific in Ashkenazi Jewish people. I just, I just you wouldn’t know. No ideas. Never had been sent anything about it or… I wasn’t even aware of the symptoms. You know, had I been aware of the symptoms and I might have been a bit more pushy at my original doctors, but I certainly would have been a bit more concerned at my new doctors, but because I wasn’t aware it was masked by the fact that I had this prolapse, you know, which could have caused the problem. So it was… I really think doctors need to do the blood test first and foremost to rule it out instantly.

Karen describes how tired she gets working as a barber in the city.

I just think I’m 49 this month. I’m a barber in the city. Do I want to be a barber at 59? And please God I live that long. You know, now I’m getting better and better, I do have to think that far ahead, and the answer is no. And to be honest I don’t think the guys will want me doing their hair, even though thankfully, I have a great clientele, very loyal, and there’s a lot to be said for experience. And I don’t go to work looking like an old lady. So, you know, but another ten years I don’t want to be doing it. I’m going to have to work, I’m a single mum; I can’t not work. So I’m sort of trying to think, what can I do that I can earn enough money to live, that isn’t going to be exhausting as standing cutting hair all day and getting the train to and from the city and I’m, I’m sort of in the throes of doing that now. It might not be for the next few years, you know, because I love my job, and I love the people I work with and I love my clients. You know, I, we laugh on and off all day. But I’m realistic and I think being realistic I won’t be doing it in ten years time, so I need to have something in place that I’m not going to have a big drop in my money, because I earn little now. I earn peanuts. You know, you only work a few days a week, it’s not en… and I can’t work any more. I just won’t be able to get up. I’m just so tired. 

Karen was excluded from her Synagogue when she got divorced. She has rejoined a different Synagogue but would not particularly look for support from them.

And have you got support from the Jewish Community? The Synagogue?

 

I wasn’t actually a member of the Synagogue. I … When I got divorced I was treated so badly by my last, by the Synagogue that I was a member of with my husband. The minute he informed them we were getting divorced, they basically kicked me out. Kicked me off the membership and then asked me to do security at the Hebrew classes that my kids were going to. So I told them that I’m not the member, ask their father. But I was actually very put out by it. And I decided not to become a member of the Synagogue. But when I got sick I thought oh I don’t want the girls to have major problems should I die with burial and … because there’s all these laws and… So I became a member of [synagogue] and they email me, and but, I’m not that way inclined. I’m not… I mean I would never have ham or bacon in the house or anything like that, but I’m not a real… I’m more a Zionist then Jewish if you know what I mean. I love Israel, and love the, very proud to be Jewish and all that, but I don’t go around, you know, looking for a Rabbi to talk to, [laughs] even though there was one when we went to Poland. He was fantastic, brilliant to listen to, but he’s one of… But [Rabbi] he’s one on his own. He’s not your average normal run of the mill rabbi. So, yes…. No, not for me [laughs]. Thanks.

 

Karen was advised to 'treat the disease with the contempt it deserves' and thinks this was good advice.

Well, if you’re thinking about getting tested, be prepared for not hearing what you don’t want to hear, but treat it that it’s good to know, rather than being oblivious. For someone that’s been diagnosed, I was given by someone who’s been in and out of remission with ovarian cancer, who’s a friend of, a friend of mine. When I saw her, literally just as I found out, she said to me, “Treat the disease with the contempt it deserves.” And that’s exactly what I did. I did. And even though I was lying there and I could feel… because it goes, the chemo, to your nerve endings, and you get these shooting pains and you feel like rubbish. I laid there and I thought bring it on. The more I hurt, the more ill I feel, even though I didn’t walk around like I was that ill, the better it was. I just thought ‘good, get it’. And that’s it. Just stay positive. It is really the key. Do not let it think for one minute; this disease, treat it like it’s your enemy and do not, for once let it see that you’re weak and that you’re going to let it get you. Because it will, if you, it will. It might not. But it certainly has more of a chance. You really have to be positively mental, you know, ahead of it. And that’s all I can say really because that’s all that I did and still here. Thank God. Yes.

 

Karen had a pelvic clearance after an initial prolapsed repair.

I had a full hyster… after the initial prolapse repair I then had a full hysterectomy. They call it a pelvic clearance and they removed the omentum because it was in that as well, which is everyone has it, it’s like a thin layer of fat that covers certain organs to protect from tropical diseases and stuff, and they removed that as well. It doesn’t grow back. I thought I was going to come out really thin [laughs]. I was getting all excited. I also asked for a tummy tuck. But they, “Said no I’m sorry but we’re cutting you the way, it would look a bit weird,” [laughs]. So I didn’t get that either [laughs]. But no I wasn’t thinner. It made no odds whatsoever [laughs]. He did say, “Don’t go anywhere where you could get a tropical disease,” because I haven’t got that to protect the organs now. 

 

That’s gone. So, yes, and that was the surgery. And they’re very pleased with the surgery, he got…. He said there might be a few little tiny microscopic crescents left, because they can’t literally, you’d be there for hours and hours and hours trying to remove every cancer cell. But the second, the last two chemos should have killed those off, and they call it mopping up after surgery. Anything tiny that might be left, hopefully the last two chemos just zapped it. And so far, so good. So obviously it’s done a certain degree of zapping. But you know, time will tell. I’ve just got to keep being positive and carrying on with my life really.

 

Karen received fantastic support from Chai Cancer Care when she was unwell and would like to give something back by volunteering herself.

Did you get any support from Chai Cancer Care?

 

Oh fantastic yes. I had a counsellor called [name], a mad Israeli woman who was brilliant. She made me laugh. She actually said I didn’t really need counselling, but she liked chatting to me anyway. So we went. So I went and we talked about shopping and stuff. [laughs] And my girls. She … I dragged my two along to the first meeting. They were fuming with me. They were not interested at all. They said they’d got their friends to talk to. So I had to leave it at that. 

 

But I kept going back they’ve actually phoned and left a message, which I haven’t got back to her yet, just to see how I … you know, to follow through and see how I am months down the line. And I went and I had some massages. Obviously very gentle. You’re not allowed anything deep tissue. But found it really therapeutic and it was all free. You know, you give donations to what you can afford at the time, but basically if you can’t afford anything then you don’t pay anything. Fantastic place. I really think it’s a fantastic place. No I’d definitely recommend it, and I definitely will in a year or so, when I’ve gone through the two years, go back and say, “Right I’m now, please God, still in remission, you know, and would like to volunteer,” especially if I’m not working full time. I feel I’ve got to do something. So yes…

 

Karen was pleased to take part in the GCaPPs study because she hadn't realised she could be at risk of getting breast cancer after having ovarian cancer.

Can you tell me a bit about having the genetic test?

 

Yes. I, bizarrely just after I came into remission, I got through the door a flyer from GCcaPPs doing a study on ovarian cancer which is prolific in Ashkenazi Jewish people and I read it, and I thought I’d like to know if I’ve got the gene, because I had no idea whatsoever. So I contacted them, had an interview, talked at length about it. What getting the results might be. It wasn’t guaranteed that I’d actually be tested. I think they look into it all. Was contacted then that I would be tested, and quite a few months later I was contacted that I needed to go get the results, and the results were I do carry BRCA 1 and BRCA 2 I carry the mutation 2 in BRCA 1 gene. So I do carry the ovar… that gene that would cause ovarian cancer, prostrate or breast cancer in men or women which means to say that I could still get breast cancer. It’s just because I’ve had ovarian cancer, doesn’t mean to say I can’t get breast cancer. So I still need to be very aware. And now I know that, I actually will be more, because I actually didn’t know that. You know, I thought once I had that… but, you know, while they’re testing me for everything else, I could still get breast cancer. I didn’t even know that.

 

And my daughters - I’ve talked to them. They want to be tested because I think that forewarned is forearmed. Had I known that I carried the gene and with the symptoms that I got and knew what the symptoms were, and what to look out for, I think I’d have been a lot more determined with my doctors. Not the ones I’m with now, the old ones, to be checked, instead of just given pills, because I needed the loo so much. Because when that started was when my cancer started. So, yes.  

Karen is grateful to know she carries the BRCA mutation because her daughters will now be tested earlier and closely monitored.

How did you feel when you found that you were carrying it [the BRCA1 gene]?

 

Actually, fine. I think had I not had the cancer, I might not have been so fine. I might have thought oh gosh, you know, I’ve got a big chance now of getting… very pleased to know that I really need to be careful and watch out for breast cancer now, because I wouldn’t have known that. And just hope my girls haven’t got it. But if they have, I’m really glad that we know and that they will be tested much earlier. She said that if we get on the genetic program they will start giving them mammograms at 30 instead of 50, and that they will have the blood test to see what’s happening. Well fantastic, because it is called the silent killer; ovarian cancer, and as I’m an example of… I had no idea, even with going through the whole medical system that I had it until the obvious symptoms showed which by then, you’ve well on the way. So no if I have and if they have, then I’m glad that I know and that, that they’ll be tested. At least, at least I know, you know, got them on some sort of testing earlier than they would have been or been totally oblivious to it. You know the same thing could have happened. 

Karen has got a visit to Auschwitz off her "bucket list".

Something I’ve always wanted to, don’t ask me why, well I know why because both my girls went with the school to Auschwitz and I was very intere… obviously being Jewish, very interested in it, and once I heard what they had to say about it and everything, I thought I want to do that, and I think every Jewish person should do it, that hasn’t been, because it’s just, now I’ve been, I just, it’s just ‘oh my God how that ever happened?’ And to anyone, regardless of colour, faith, whatever they are, it should never happen again. And unfortunately in the world, even now genocide is happening and I just think it’s just, it’s just awful, really awful, and it really got me. 

 

But I did think to myself, building up to going to Poland because when we came out the room, when I was told I was in remission and the professor had said about doing everything now, but at that point, I think my brother would have paid for anything, because he was just so happy because we’re very close because I was okay. I could have said the Seychelles. I could have said I’ve never been to Dubai, I haven’t been to India. I could have said anything. No I said Poland for the day [laughs]. But I’m glad I’ve been. Now I’ve done it I’m really glad that I said that, because probably prom… because he wanted to do it for me, it did make me do it, so I’m glad. I’ve got that off my bucket list.