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FORCE (Facing Our Risk Of Cancer Empowered) is a non profit organization very close to my heart. I was frustrated and lonely when I couldn’t find a support network in New Zealand and was both relieved and overjoyed when I found FORCE. http://www.facingourrisk.org/

Last year I was lucky (which is really an understatement) to receive a scholarship to attend the annual conference in Orlando, Florida. Never in my life have I felt so understood, and part of something so wonderful. It actually changed my life, it helped me understand, it helped me acknowledge, it helped me accept and it certainly empowered. I was among hundreds of woman just like me. None of us were “different”, we shared, we laughed, we cried.

I wanted to share the experience, I wanted to help be a support, I wanted to help spread the word, so when FORCE branched out and started up international support groups, I very eagerly took on the roll for coordinator in New Zealand.  http://www.facingourrisk.org/FORCE_community/local_groups/int-newzealand.php I will never forget the first support group meeting, the feeling of being able to help, to share and to let people know they weren’t alone and didn’t have to be.

I am going back to the conference this year, this time as a speaker on the international experience,  I feel overwhelmed with emotion when I think of all the good that FORCE does and am so happy to be even just a little part of that.

But FORCE wouldn’t exist if it wasn’t for one extraordinary woman named Sue Friedman.

Dr. Sue Friedman was practicing small animal medicine in south Florida in 1996 when she was diagnosed “out of the blue” at age 33 with what appeared to be sporadic breast cancer. At the time, she was unaware of any familial risk factors for hereditary cancer. After her treatment, however, Sue realized from an article about hereditary breast cancer that she had several indications for a mutation. She pursued genetic counseling, and in 1997 she tested positive for a BRCA2 mutation.

Shocked that her health care team didn’t alert her to the possibility of being at high risk, and disappointed at having to make critical treatment decisions without knowing of her mutation, Sue acted so others could benefit from her misfortune. She founded FORCE in 1999 to fill the information void for individuals and families with hereditary cancer, and to help them advocate for themselves. Under her direction, FORCE has grown into the de facto voice of the hereditary breast and ovarian cancer community, filling the unique and unmet support needs for those who are navigating risk management and treatment decisions.

With FORCE, no one needs to face hereditary breast and ovarian cancer alone. After five years as the organization’s executive director and maintaining her own busy practice, Sue left veterinary medicine to direct FORCE full-time. Since then, the organization has established itself as an unequaled source of research, advocacy, support, and information regarding risk management, prevention, and awareness. In 2004, Sue relocated her family and FORCE headquarters to Tampa to work more closely with researchers to improve options and care for high-risk women.

Sue is my hero…..

 

 

I had my ooph in July 2009 and my “womanhood” Doctor refused me any form of HRT, with being BRCA+ she wouldn’t allow the risk. So after I had my mastectomies, I went back to her and said “what about now”? I’ve almost zeroed the risk of breast cancer and would really benefit from some sort of Estrogen. I had researched studies so it wasn’t like I was going into her office and saying “oh I had coffee with so and so the other day and they said Estrogen is the latest fad”! Her answer was still the same….NO, but she offered some alternatives, like herbal or antidepressants….

So I have asked to be referred to a “menopausal specialist”…

How do we manage the side effects of  surgical menopause?

The side effects of oophorectomy may be alleviated by medicines other than hormonal replacement. Non-hormonal biphosphonates (such as Fosamax and Actonel) increase bone strength and are available as once-a-week pills. Low-dose Selective Serotonin Reuptake Inhibitors (e.g. Paxil, Prozac) alleviate vasomotor menopausal symptoms, i.e. “hot flashes”

In general, HRT is somewhat controversial due to the known carcinogenic and thrombogenic properties of ESTROGEN however, many physicians and patients feel the benefits outweigh the risks in women who may face serious health and quality of life issues as a consequence of early surgical menopause. The ovarian hormones estrogen, progesterone, and testosterone are involved in the regulation of hundreds of bodily functions; it is believed by some doctors that hormone therapy programs mitigate surgical menopause side effects such as increased risk of cardiovascular disease, and female sexual dysfunction.

Short-term hormone replacement with estrogen has negligible effect on overall mortality for high-risk BRCA carriers. Based on computer simulations overall mortality appears to be marginally higher for short term HRT after oophorectomy or marginally lower for short term HRT after oophorectomy in combination with mastectomy. This result can probably be generalized to other women at high risk in whom short term (i.e., one- or two-year) treatment with estrogen for hot flashes, may be acceptable.

So I await eagerly an appointment (and second opinion) this is such a controversial topic, I know and everyone has their opinions (and I am not a medical person)…

For now I live without Estrogen….

 

 

 

Depression

Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behaviour, feelings and physical well-being. It may include feelings of sadness, anxiety, emptiness, hopelessness, worthlessness, guilt, irritability, or restlessness.

Depressed people may lose interest in activities that once were pleasurable, or suffer cognitive impairments (difficulty concentrating, remembering details, or making decisions). They may contemplate or attempt suicide. Their weight may change dramatically. Insomnia, excessive sleeping, fatigue, loss of energy, or aches, pains or digestive problems that are resistant to treatment may be present. Depression can cause pervasive problems in an individual’s life through its (often unconscious) changes to behaviour (e.g. a pygmalion effect of expecting poor social performance, and ultimately pushing people away).

I suffer from depression…. It took along time to accept it, even longer to admit it. I believed that my depression was my fault, and I deserved it. It started just after I had my oophorectomy and sucked me into a deep dark hole that I thought would be impossible to get out of, I felt alone and scared.

When I went to my doctor to talk with him about it, he actually said that people were so afraid of the word depression because it made some people feel like they had some sort of disease, and that depression is actually quite common….

How common is depression? It’s very common. One in six New Zealanders will experience a major depressive disorder at some time in their life. It’s more common among females (one in fi ve females, compared to one in eight males). One in seven young New Zealanders experience a major depressive disorder before the age of 24. Depression increases the risk of suicide by 20 times.

what can cause it?

There’s no simple answer to this – usually it’s a combination of things that happen to a person. Research indicates that ongoing diffi culties, such as long term unemployment, alcohol problems, chronic illness, or living in an abusive or uncaring relationship, are more likely to cause depression than recent stressful situations. Sometimes there’s no obvious reason. But certain factors can put you at higher risk. These include: Family • A family or personal history of depression.• Conflict or violence within your family.• Bad things that happened when you were a child• Death or loss of someone close.• Breaking up with a partner.• Falling out with someone you care about.• Traumatic or life threatening events.• Too much pressure and stress at work, school or university.• Feeling you’re being bullied or undermined.• Losing your job or being unemployed for a long time.• Having a head injury or other trauma, epilepsy, or a long term or serious illness. • Some women experience depression during or after childbirth.

If you want to talk to a trained counsellor about how you’re feeling, or you’ve got any questions, you can: • Call the Depression Helpline on 0800 111 757 (New Zealand only) or visit http://www.depression.org.nz

Please know that you are not alone

 

 

 

 

calling heaven

I lost my Aunt 6 years ago to cancer, we were as close as you would expect a mother and daughter to be, in fact I often felt cheated that she wasn’t actually my mother. When she had accepted that her time on earth wasn’t going to be for much longer, she decided to move to Australia to see her grandchildren grow up.  Shortly after she left, I got a new job and Esteban and I were planning our wedding. I was working 70hours a week in a very demanding job, but no matter what, all the staff knew I had to be out of there by 6pm Wednesday’s no matter what… Wednesday’s were the days that Aunty would call me, 6.30pm every Wednesday night. I would get home, take my hair out, grab a snack and curl up on the couch with the phone. No matter how good or bad my week had been up until then, that call always made things so much better. The same thing happened on a Saturday night, only it would be me calling her, like clockwork every single week.

I missed her so much, I hated the distance, I hated that she was sick from the chemo, I hated that she had cancer to start with…. I always would say, why don’t I come for a visit? and she would always simply say, I will call you here when I need you, and that was that.

Esteban and I married in November, we chose our own vows and as the celebrant was reading them out, she said “and Karin and Esteban are saddened by all who could not be present today, especially her Aunt Gaye who is ill in Australia”, and tear slid down my cheek.  She was the first call I made after the wedding, and she sounded so excited as I told her about how everything was and how wonderful the day was. She was so happy that I had found Esto, she even had given me her “approval” to fool around with him when she met him!

I knew that that Christmas would be her last, I carefully chose her gift, a doll, not just any doll but a beautiful ceramic angel with a gold dress and beautiful curly blond hair, she was on a swing with such a carefree expression on her face. She rang me to say the box had arrived and that she was putting it away until Christmas day, I asked her not to, that I wanted her to open it now so she could truly enjoy the beauty of it. My cousin ended up coming on the phone as my Aunt had broken down in tears when she opened it, she loved the meaning of it, and had it hung above her bed.

Christmas came and went, and life went on. Then I got that heart stopping call, very weakly she said “I’m not doing so great, the doctors given me 8weeks”, oh I said, so you wan’t me to come now? “yes she said, I need you now”… I will never in my life forget that night, I put the phone down and fell to the floor, I could barely breath, why? why? why? I kept asking Esto, he stayed silent, just hugging me. Although I knew this day would come, I wasn’t ready….

My cousin Heather was waiting for me at the airport, we clung to one another as she told me that the night before my Aunt had been taken into hospital, we had to wait an agonizing 8hours to get a flight to where she was. Heather and I talked all night, we were so bonded by this wonderful woman and it was breaking my heart to know that this would be my last visit.

I walked into her hospital room, and she turned and looked at me, we both smiled, I took her hand and she thanked me for coming. “I told you when you needed me, I would come”… the only thing is, I said “I didn’t come to watch you die ok”? The nurse came in and Heather excused us from the room, we walked into the hallway and fell into each others arms, Heather had been there the whole time so she had seen the decline, I only had the memory of her when she left a couple of years earlier……It was hard to see. That was Friday, exactly one week since the doctor had given her 8 weeks.

She died that Sunday, and I wasn’t in the room. I didn’t see her die, but my heart did break. I swear that after everyone left and I was standing in the room looking at her so peaceful and no longer in pain, a red rose sitting brightly on her chest, I felt her put her arms around me.

I was talking with a friend the other day and we were talking about if you had one wish what would it be, and mine  surprised her. My wish would be for it to be 6.30pm Wednesday night, me curled up on the couch with the phone in my hand talking to my Aunty, I would record that conversation to keep forever, the one when she said “I love you like a daughter and although not your not biologically mine, you are in my heart like a daughter. Try not to forget that you create your own happiness, you have life and you have love, you don’t need much more than that, the conversation would end like it always did with, I love you.

If only I could call heaven…………

 

being BRCA

I am a mutant hear me roar… well lately it’s been a bit more like a meow… The last two weeks have been really hard on me both physically and emotionally. My last surgery hurt more than my original mastectomy (I was just having the faulty implants replaced) and I wasn’t really prepared for the flood of depression I suffered immediately afterwards. The regret (yes regret) the anger, frustration and ugliness.

I started to feel engulfed in misery and pain, and self pity… then last night I had a visit from my niece. She’s only 18 and we got talking about my Mum who is battling ovarian cancer, she asked lots of questions  about the cancer and the gene and what testing was like. It took me back to that place I was before I was diagnosed BRCA, the place where the hardest decision I had to make was what kind of gourmet dinner I was going to whip up or what outfit I was going to wear, and for a split second wanted to be back at that place again. But I’m not, I’m here living with my BRCA status, embracing the future and trying to beat the odds. She asked me what my journey had been like, I told her with all honesty and she asked to see my implants and the scars, I shyly showed her the implants (they aren’t quite right yet) but proudly showed her the scars.

After more talking she turned to me and said, “your really good at talking about BRCA, have you thought about doing it for a job?” I do it as a job I said, I AM A BRCA MUTANT HEAR ME ROAR

After my exchange surgery last July, I thought that my life would develop some form of normality (not  sure what I was expecting really) but some how my body just refused to accept the implants and did everything it could to extract them (and make my life miserable at the same time). So I had grade IV capsular contracture and and needed the implants changed…

fast forward to now March 2011…… surgery didn’t go to plan (what a surprise) my surgeon had to scrape my ribs to get the capsular out and I bled more than usual too…. recovery, spent 7 hours in recovery throwing up. Actually, when I woke up I thought I must have still been on the operating table, my pain was off the chart. Two days later and the pain had somewhat subsided (went from 10/10 to 7/10) and was sent home. I peeked at my new boobs, and daydreamed about how great they were going to feel, how exciting it would be to be pain free and how my life could now go back to normal….

8days post op and I was back in hospital, this time with DVT, the doctor needed to check my wounds after I had been given the blood thiner to make sure I hadn’t bled out my incisions… we both looked together…. and that’s when I noticed my body had done the same thing it had done a year before…. pushed the implant to the side and created lumps through it. The other implant sat perkily upon my chest as if sitting up in pride, saying well I didn’t fail!

So now I sit here and wonder how far do I go? how much does my body hate me? will I ever be pain free? and yes I do ask myself, what the hell have I done? and I feel a tinge of regret, yeah I do.. I hate to say it but it’s how I feel right at this moment.

My wonderfully supportive husband said to me last night, there is only so far you can push your body before the odds go against us… and he’s right… but I don’t know that I can live with the alternative of pain and boobs that make me hate myself.

Maybe that’s the solution, maybe I need to learn to love myself…

effen cancer

I was talking recently with an elderly lady who lives on our street. She was saddened by the loss of one her friends and said “well I suppose I am at that age when everyone starts dying”….

she’s at THAT age? I very politely said to her, “well I’m not sure there is such an age when you start losing your friends” her reply was “what would you know?” It’s not like you would be losing friends at your age”. Well the thing is I am losing friends at my age. I am losing friends to bloody cancer. Every day I wake up I’m reminded that, I live with the enormous odds that I or one of my friends could be diagnosed at any time with breast or ovarian cancer. That’s one of the things you become aware of when your BRCA+.

Please don’t take people for granted, live everyday as if it were your last and most importantly tell the people close to you how much you love them, you never know when it might be to late.