Shared Stories & Ideas

If you have anything you’d like to share with the group such as tips, ideas, stories, suggestions, information, etc. Then e mail or post it to me via our contact us details. I’d love to hear from you.

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Sex and the Single Breast Cancer Survivor

With the widening public awareness of breast cancer, and with younger women being diagnosed every year, a new sub-group is emerging: The single young woman with a breast cancer diagnosis.

The diagnosis of breast cancer from a singles point of view offers a set of different dilemmas and challenges to the ones faced by women with partners and children.

I was 35 and single when I was diagnosed. I'm now 37 and still single. I've attempted two serious relationships during this time and two not so serious ones.

One of the main difficulties that I've had, coming at this disease from a single perspective, is the sense that to a certain extent, I'm doing this alone.  Or to put it another way, that I don't have a 'significant other' to share my journey with.

Don't get me wrong, my family and friends have offered me tremendous support but at the end of the day they go home to their lives and I go home to mine.

When I come home at night after having one of my depressing days and feeling overwhelmed by the journey, I don't have the support and the loving, nurturing arms of a close companion to hold me and share my grief. At the same time when I have a great moment, sitting in a park looking at the beautiful trees and thinking, it could be worse, I could be dead, and not be able to see this beauty again and when I think that my life is so important and there is so much for me to embrace, there is also no one to share this with.

Another significant issue for me is how to search for a good relationship from this new place as a single breast cancer survivor.

I'd never really thought that I'd be looking for a mate from the perspective of having had a life threatening disease. If there's one way you can significantly deplete your single stocks in one fell swoop - telling a prospective partner that you've had breast cancer isn't a bad way of doing it!

I've had issues with the questions of: Should I tell? When to tell? Two weeks? One month? Six? If I do tell, will he go running and screaming into the night? I think how I would react if someone told me something big like, "I've had cancer." I'd like to think that I wouldn't be solely focused, and so fearful of its impact on me that I'd be too frightened to pursue a relationship with someone I really liked. But honestly, I can't say definitively that I would.

There's also the lingering question I've had when a relationship hasn't worked out: Was it because of my cancer?

It's also a matter of coming to a relationship with my confidence depleted. The feelings of being a bit faulty and the huge issue of the way my breast now looks.

Personally, I'm quite proud of my scar. My war wound! But my breast does look and feel different. Radiation and scar tissue has left my breast generally sore and the scar area is very delicate. I'm a bit more physically and emotionally fragile than I once was. How do I share this with a prospective partner who I haven't built up years of intimacy with?

Treatment and its effects have opened up new problem areas to do with the change to me physically, and issues surrounding intimacy. I'm on a double whammy mix of hormonal therapy: Zoladex implants, (I'm coming up to my 21st month of a 24 month treatment plan in April) and a further 3 years of Tamoxifen. This has sent me into a bizarre world of induced menopause at 37.

This dress rehearsal for the real deal has been distressing. When my Mum would tell me she was having a hot flush and have to take a bit of time out, I'd think it couldn't be THAT big a deal. I've since apologised to her profusely!

I've gotten used to them as part of my daily routine. (I have, on average, about three to four a day. Sometimes more, sometimes less and usually wake up at least once a night having one) I'm practised in the art of quickly disrobing, as this sudden onset of heat and sometimes nausea overwhelms me. The best way to describe it is walking into a sauna that's too hot and being immediately overheated throughout my entire body. Night sweats are also a problem. There's nothing like waking up in the middle of the night drenched, or in the morning covered with the remnants of a sweaty, sticky residue!

Sex is another biggy. It's painful! The dry vagina syndrome associated with menopause has made sex for me less than pleasant and problematic for a fledgling relationship.

The ramifications of possible infertility have also been enormous and impacted directly on my treatment decision. I was given two options by my oncologist: Chemotherapy/Tamoxifen. Or the newer (at least in Australia) Zoladex/Tamoxifen therapy. I chose the later option because of the possibility that I could become infertile with the Chemotherapy treatment. At that time the loss of my fertility, even though the risk was low, was still a risk that I wasn't emotionally able to take.

I've always wanted to have children with the right man. I'm still searching for him and if I find him, I will have to make a decision on either continuing my treatment until I'm 40, significantly reducing my chances of conceiving, or stopping treatment altogether and attempting to have a child, with all the health implications that this would entail.

Despite this there are many positives for me, a single woman, as I travel along my cancer journey.

I can pursue my own interests and take up new opportunities without worrying about the impact on my family. I don't have to worry about managing my own health and that of my immediate family’s physical and emotional well being. Or worry about nurturing my partner and children, as well as myself. I'm free to take care of myself, first and foremost.

I've achieved much that I've been proud of since my diagnosis. I've gone back to university this year and in many ways my life is fuller than ever... Yes, I still get lonely.  Being alone and lonely (the terms that go hand in hand with society’s perception of being single) are seen as the saddest of all states to find yourself in... Being lonely and in my case, having had a life threatening illness, worse still.... I don't know. Maybe it's not as bad as we think.

Melinda McCormack, 15 April 2007

 

Mary Macheras-Magias, Diagnosed aged 33

 

UNTITLED

 

 

“Lift your arm dear.

Hold still.

Hold old did you say you were?”

Uncomfortable silence.

Not knowing where to look.

“Just hold on dear. I need to speak to the radiologist.”

 

I know the signs.

I’ve been here before you see.

People running to confer.

People looking anxious,

But not looking at me.

 

“How long have you had the lump?

When did you first notice it?

Who found it?

So you’re 33!”

Silence.

 

More tests – this time mammogram.

Painful

Lift

Squeeze

No dignity – just mechanical movements

That lead to the inevitable conclusion

 

“We suspect you have cancer.

You will need more tests.”

Needle aspiration, core biopsy.

Tears, Fears.

 

 

First operation results not good.

“We’re afraid we must remove your breast.”

“Fine lets plan it soon.”

“Wouldn’t you like time to discuss this with someone?”

“What’s to discuss?

The final conclusion will be the same.

I have no choice.”

 

Friends have been amazed at my strength.

I don’t see myself as particularly strong.

Selfish perhaps.

I’ve burdened them with the finer details of my illness and treatment.

 

They’re crying for me.  They’re reaching for me.

This has helped. I’ve been able to move forward.

Discuss the next step.

See things rationally.

I can’t be the one crying.

I need to be the one fighting.

 

Irony

Paradoxes

Pain and suffering

Cancer is all this

There is no doubt.

 

I have new eyes since I embarked on this journey.

From the day of diagnosis on

I’ve been forced to move forward

Look at things differently

Appreciate more

Love more

Live more.

 

Mary Macheras-Magias

Age at diagnosis:           33

Year of diagnosis:         1999

At time of diagnosis Mary was working as a secondary teacher and her sone was aged 4.  She has had a mastectomy, her treatment included chemotherapy and radiation therapy.  She had a Tram Flap reconstruction 20 months later.  She is a founder and chairperson of Young Action on Breast Cancer, and has developed many initiatives around young women’s issues, including a national email link; the Up Close and Personal Forum for young women; and was a working party member for the development of National Breast Cancer Centre (NBCC) Clinical Guidelines for the Management of Young Women with Breast Cancer.  She is an active member of Breast Cancer Action Group (BCAG), and is a consumer representative for BCNA.  She is also a YWCA Encore Instructor (After Breast Cancer exercise program).  Last December Mary travelled to Sri Lanka with other young breast cancer survivors and helped build houses for an impoverished community living in a shanty town built next to the city tip.

 

Joanne Smith's Story: The Diagnosis- March 16th 2005.

The Diagnosis- March 16^th 2005.

 

“Yes, well it has been confirmed….” the surgeon said as he uncomfortably sat down at his desk. The desk separated us. I sat still and was dumbfounded; I had been diagnosed with breast cancer at age 32. I wanted to shout, to scream, everything felt like it was moving in slow motion, as though I had woken up out of a haze when he said those words. My husband sat there, he too in a state of shock. We had been married for 14 months and had planned to try and start a family in 2005, this news had thrown these plans into disarray. I felt my dreams for the future disappear in an instant.  He said I would need surgery, chemotherapy and radiotherapy. I was scared, I had never been in hospital. What would the treatment be like? I’m too young to die I thought, this isn’t fair. I recall as we left his room he handed me the name of a fertility specialist to make an appointment with. “What do I need a fertility specialist for?” I thought.  Reflecting back, my mind had started to shut down to protect me, it was too much to take in. I left the surgeon’s room in shock, no tears, I couldn’t even cry. I had just been diagnosed with breast cancer.

 

My mind raced ahead and I began to think about all the people close to me that had been overcome by cancer, my father, grandmother’s, friend’s parents, friend’s friends. We left the consultation rooms out into the night of Melbourne, to the sound of traffic, the traffic lights turned to green, trams rushed by, people went about their daily lives. Yet at that point, I felt my life was at stand still, I felt like an observer to life, it was passing by and I was caught in shock. How would I break such news to my family, friends and what would they say, how would I deal with their reactions, how would I say it will be okay, when I didn’t know that myself? I recall the first calls, of calling my eldest brother and telling him to come over, it was a time that I wanted my family to be gathered around me, sticking together. As we drove home through Melbourne’s familiar streets, the surroundings were still the same, yet I felt something huge had changed for me and my husband and that life would never be the same again. Upon this realisation, tears started to fall.

 

There were a lot of decisions to make in a short period of time. One major concern was the impact the chemotherapy would have on my fertility. It was all a bit uncertain, and some of the options were not thoroughly grounded in substantial research. I felt that I had to decide quickly and it was strange to be talking about fertility issues when I was dealing with facing my own mortality. To try and hold them together was a challenge. I just want to be here I thought. Yet, we held onto hope, and wanted to do all that we could to keep the options open. My husband and I decided to freeze embryos prior to the chemotherapy and I also opted to take Zoladex injections whilst on chemotherapy. It was a surreal experience turning up to the IVF clinic , amongst women who were trying desperately to have children and the Nurses greeting us with excitement, yet I didn’t feel excited. I was dealing with more than possible infertility, it was just one of many issues.

 

As friends and family had babies, and experienced fatigued from pregnancy I was experiencing the side effects from chemotherapy and radiotherapy. It was a challenge to continue to live life as “normal”. For life had immeasurably changed. I begun to feel teary around babies, and noticed women in the street who were pregnant, attending friends children’s birthdays, christenings left me feeling emotional and sad. I was genuinely happy for my friends, yet I felt a sense of grief and felt empty inside. I felt isolated from my friends, how could they really understand exactly what I was grappling with? I wrestled with many dilemmas. How could I acknowledge my own feelings and experience and be open to the joy friends were experiencing of having a baby or being pregnant? If I shared with them how I was feeling, what would they say? Would I make them feel uncomfortable, guilty for having kids? I didn’t want to be the thorn in their side. If I shared my feelings they might treat me differently as though I were fragile or feel they couldn’t share with me their lives, yet all I wanted was some sensitivity. When talk turned to babies a part of me wanted my experience to be acknowledged too and not shunned away from or talked about, as this only caused me to feel even more isolated. It was like I was treading a fine line. I knew that these dilemmas would continue to impact on me after treatment and that I would need to learn to live beyond them, and come to a place of acceptance, this would require patience and time.

 

It is now a year since I was diagnosed.  I have completed 10 months of treatment, which involved two operations, IVF treatment, 10 chemotherapy treatments and 6 weeks of radiotherapy. When I reflect on the last year and what things helped me during the tough times these have been the support from my husband, family and friends. It has also included becoming involved in a Buddhist healing meditation group, doing mosaics, buying/doing something nurturing after each chemotherapy, going away for weekends during treatment to focus on something external (nature I found to be a good healer), when I had my down days, allowing myself to feel however I was feeling without beating myself up and then accepting that it would pass, eating well and exercising, being informed, going to Breacan, attending support groups, speaking to other young women who had experienced breast cancer and marking different phases with rituals and holding onto hope.

 

A turning point for me was going away on a holiday to mark the completion of treatment. Whilst on holiday in Western Australia, at sunset looking out at the ocean I shredded one by one the cards from my radiotherapy appointments and threw them into the ocean. There were tears shed and it was a hard thing to do, to let go of the pain of the last year, a significant part of my life which would have an ongoing impact, yet it was liberating, a part of me that had been hurt could now begin to heal and I was entering a different phase of the journey, a scary phase yet also a time of opportunity.

 

For the last year I feel I have been climbing a mountain! It has been challenging, unpredictable, humbling, an adventure and at times I feel I have become more alive and have been jolted out of the square I was living in. I have changed and the experience has highlighted to me my own resilience and ability to deal with adversity. Like a mountain, some days the clouds hang over me, other days I can see and feel the sunshine. I am gradually learning how to live with this contrast. 

 

 

Joanne Smith 16/3/06

Thanks for your June newsletter.   I was wondering if you could forward the email you sent regarding herceptin.  I recently started on herceptin (after getting a local reoccurence).  I was also part of the control group for 2 years before this. I also have a fertility success sorry. I have just had my third baby nearly three years after my original diagnosis.  Everything was going really well until I noticed some lumpiness near my original surgery three weeks before my baby was due. We decided to get baby out early which was fine by me (I was over being pregnant!)  The Mercy hospital was fantastic. It was decided that I would not go home after having the baby but to be transferred downstairs to Mercy Private for my operation and Luke my new baby would become a boarder in the nursery on the ninth floor. I finally left hospital ten days later with my beautiful baby, minus a breast.  I breastfed my two older children but this little one has been on a bottle from the start.   I was unsure about it at the beginning but four months down the track we are both doing really well and getting lots of sleep! Jane

 I have recently given birth to a beautiful baby girl Caitlin Elizabeth, born 15 June 2005. This has been the most wonderful experience in my life, twice as sweet of course given that 12 months prior I was having my last chemo session and then just starting my radiotherapy. A year ago I hardly dared to think about my fertility and whether I might be able to conceive. Given my age of 39 at the time of diagnosis, my husband and I decided to do a cycle of IVF before I started my chemo and were lucky enough to freeze 6 embryos. I finished my breast cancer treatment at the end of July and then with the encouragement of my Oncologist put my name down for the Herceptin trial into which I was accepted. In September I visited my Oncologist and he advised that I had been randomised into the 'control group' for the Herceptin trial. He was very disappointed, I decided what is meant to be is meant to be and tried not to be disheartened by this news. On the positive side he gave us the OK to try and get pregnant although at this point my cycle had not returned since the completion of my chemo in June. So thinking to myself one step at a time, I'll have to wait to ensure my cycle returns before I even know if I can try to get pregnant my husband and I decided it wouldn't matter now if we used no contraception at all.Looking back on the dates, I obviously was pregnant within a week of my Oncologist giving us the OK, so I fell pregnant on my first ovulation and didn't even know it at the time!  (My husband thinks it must have almost been an immaculate conception given that our sex life had obviously dwindled greatly during the treatment cycles!) Our little girl is now 10 weeks old and I successfully breast fed her from one breast for 5 weeks when I was then offered the chance to receive Herceptin for a 12 month period so I have now weaned her and had my first cycle of Herceptin. Given the wonderful news of the success of Herceptin I really feel I have had my cake and am now eating it too ( a baby and having Herceptin). We are also lucky enough to still have our 6 frozen embryos so when my herceptin treatment is completed in 12 months time, we hope to try to conceive using these. I hope my positive experience will give some hope and encouragement to others who are wondering about their fertility after breast cancer. Wow, miracles really do happen, I feel so very blessed.  Lisa

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