Elaine, In the arms of the angels xx

I was sitting at my computer tonight trying to write a blog..but somehow no words could come, my fingers felt so foreign to the keyboard, Elaine constantly on my mind.

Tears were welling up in my eyes when Esteban walked up behind me and touched my shoulders gently… maybe you’ve already written what you need to say before, he said to me… I wiped my tears and looked at him as if he was talking another language… he walked away, I put my fingers over the keyboard again and closed my eyes… maybe he was right.
So I started reading my blog, and thats when I realized he was right, I had written it before.. the 5th October 2010. Only difference was, this time Elaine had actually gone to heaven….

Numb

October 5, 2010 by estosgirl | Edit

About a year ago I became part of a sisterhood that changed my life forever, and I became friends with  the most amazing women I have ever met. We talk on an almost daily basis, sharing in every detail of our lives, we are sister’s, together in the good and the bad, we share the highs the lows and everything in between. I can’t imagine life without my sisters……

I have not been living with the lights off or even in denial, I have faced this mutation head on from the start, but this week I met something called REALITY , and man does it suck…

I woke up yesterday to the news that one of my  Sisters was in hospital and not expected to live. The message seemed to swirl in my head, I stood up from the computer and walked away, thinking that maybe when I looked again it would say something different, maybe I had read it wrong…Surely it can’t be right, there had to have been some kind of mistake. In that very moment for the first time in my life I felt vulnerable, I felt scared beyond words, I felt that maybe all the surgeries I am doing to save my life have been a waste, as death will find me anyway. I felt almost lost, empty and alone.

As the day went on tears seemed to come easily, I felt like a child who was lost in a crowd and was desperately seeking a familiar face. I had very little words to say as everything I wanted to say got lost in the sobs that my body could no longer control, still I could not get my head around the fact that I was about to lose a wonderful friend who was far to young to die. Then came the anger, I HATE this mutation, I HATE that it is robbing me of my friends and family, I HATE that it controls my life, I HATE that I HATE it….

The day became a blur and I was constantly checking the computer for an update, maybe the doctor’s had gotten it wrong…Then the reality of seeing these words really started to sink in:

Hi Karin
I am sending messages to some of ELaines Brca sisters to give the full story but she does not know the extent of her problem and as you will understand I have confiscated her phones till she knows so she cannot find out by accident. SHe had a headache on Thursday and she looked like she had had a stroke so I called an ambulance and she went in to Poole GEneral. ON Friday I was told she had had a massive bleed in her brain and it may have been due to a tumour about a third the size of her brain which is suspected to be a secondary to her breast cancer. TO the doctors surprise she lived through Friday night and at present is recovering but could relapse anytime. SHe was lucid when I left her tonight but a bit confused possibly due to tiredness. WE hope to get her back to BIrmingham in the next few days to QEH hospital where she may or may not get radio or chemotherapy but in the long run the tumour is likely to be terminal.
I am sorry to be the bearer of such bad news and feel like I am living a nightmare.
PLease feel free to pass the message on.

I must have read this message at least a hundred times, yet I still don’t believe it, I can’t believe it, I refuse to believe it. I am not ready to lose Elaine, I’m not ready to lose anyone, I’m not ready to face reality either…

Helpless is how I feel 2day, Elaine I wish we weren’t so far away, a simple hug & a smile, I’d like to stay and sit a while. I’d like to hold your hand & say, Magic wand please make this go away. Elaine, stay strong my special friend, this surely can not be the end…

Elaine,

If I could go back a week and tell you something, it would be something that you already knew, something that I am glad I told you often. I am so proud of you for everything you have ever done in your life. I am proud to be your friend and sister, I’m also lucky to be both.  I love you to the moon Elaine, love your little kiwi xoxo

………………………………………………………………………………………………………….

so that’s what I wrote then, what would I add to it now?

Elaine, you were such a great warrior, and real fighter with inspirational spirit.

An angel walked the path  last night, she made her journey home…she was such a special friend to many, it’s heartbreaking to see her go. In heaven she’ll be free of pain, on earth never forgotten. Fly free my friend, your star shines bright, the brightest star in the sky tonight x love you — with Elaine Graham Hardy.

Down but not out

The last couple of months have been a little hard on me emotionally…. For the longest of times I have buried myself in helping others (which is extremely rewarding) with BRCA and other issues… one day a couple of months ago, I realized that while I was doing this, I was ignoring what was going on with me… whilst busy trying to fix everyone else, I failed to recognize that I was feeling broken myself….I needed to take some “time out” and really truly accept the person I have become, not the person my boobs were holding hostage…. I have discovered new things to love about myself and instead of seeing things as a negative I have turned them into a positive…

I am so lucky to be part of a wonderful group of friends and an organization such as FORCE…

I am a PREVIVOR hear me ROAR!

Happy HBOC week everyone xxx

When is enough Enough?

I have had a long bumpy road since I had my PBM February 2010… many complications, many surgeries, many tears. In March 2011 I had my implants replaced due to grade 4 capsular contracture. My surgery was harder on me than I had anticipated and so was the pain, but everything seemed to have gone well and my surgeon was happy with the results (admittedly she said I would need some tweaking). One side seems to have behaved nicely the other side is a little more rebelious!

So I find myself asking when is enough ENOUGH?

I feel like my life has been on hold since I started the surgeries,  simply existing and not actually living, so I have decided that for now Enough is Enough and I am going to try and find me again and not the scared lonely person I have been.

Here’s to the road ahead, may it be a bump free exciting ride!

June

I am attending FORCE’S 6th annual conference in Orlando, Florida in June. I must admit that is something that keeps me motivated and distracted from all that is going on.

I can’t wait to meet up with all the wonderful woman I met last year and some new ones that are going this year. How life changing is it going to be for someone to experience such a place of knowledge and non judgement.

http://www.facingourrisk.org/

Is it June yet!!!

I

I am so tired right now that I can barely speak let alone think! busy weekend catching up with family and friends, 2 birthday parties and 3.5weeks post op from reconstruction for the second time…

I really don’t have anything to say today!

Hope

I hope a cure is found for all cancers

I hope that my children don’t have the BRCA gene

I hope I get to see my children grow up

I hope I get to see my friends and family grow old

I hope that the world finds peace

 

 

Genetic testing: when your at high risk of HBOC

The majority of breast cancers are described as sporadic because they develop spontaneously in an individual after the chromosomes in a cell are damaged by external factors such as radiation or chemical exposure. This damage allows the cell to multiply in an uncontrolled way. Further defects in the bodies regulatory systems must also occur to allow the cancer to grow and spread.

5% of breast cancer is thought to be due to an inherited abnormality. In these cases an abnormal gene has been passed on from the parents. This inherited abnormality means that the first step in the process of cancer transformation is already entrenched in the cell and therefore cancer is much more likely to develop. There are presumed to be many genes involved in the development of cancer. 2 specific genes have been identified that increase breast cancer risk. They are referred to as BRCA1 and BRCA2, and were first discovered in the early 1990s. Both of these genes code for proteins that are normally involved in repairing damage to the DNA of the cell and thereby stopping cancer from forming. If someone inherits an abnormal gene then this protein is defective and cannot do it’s job properly. There is consequently a much higher risk of breast and ovarian cancer in people with this abnormality. Tests can be performed to identify these genetic abnormalities in women who have a strong family history of breast and/or ovarian cancer.

when to consider testing:

• 2 or more first or second degree relatives with breast or ovarian cancer plus:
• Additional relatives with breast or ovarian cancer.
• Breast and ovarian cancer in same person
• Bilateral breast cancer
• Breast cancer in a male relative.
• Breast cancer diagnosed before age 40 years.
• Ovarian cancer diagnosed before age 50 years.
• Jewish ancestry.
• Member of family with confirmed BRCA abnormality.
• Note: A first degree relative is defined as mother, sister or daughter.
• A second degree relative is defined as aunt, nephew, niece, or grandparent.

Referral: (NZ ONLY)

 

The Regional genetics service has offices in Auckland, Wellington and Christchurch.

Cost: free

The first step is an interview to collect details of the family history.

There will also be discussion about the implications of testing. This will cover questions such as:

• Do you actually want to know that you have a very high risk of developing a potentially fatal disease?
• How will your family react to this information?
• Will it create anxiety for other female family members?
• What about testing children in the family and discussing this risk with them?
• Will there be implications for future medical insurance or job applications?

Once a decision is made to proceed the process of genetic testing is complex and costly. The general approach is to first test an affected family member as the chance of finding an abnormal gene is higher in these individuals.If they test positive then other family members will be offered testing.

A blood sample is sent to an Australian laboratory. It may take 4- 6 months to get a result.

If you test positive you will be given options

Surviellance: your medical team will monitor you closely to make sure there are no changes, regular CA125 tests will be carried out as well as ultrasounds, mri’s and mammograms

Prophylactic Tamoxifen: is thought to reduce risk of getting breast cancer by 30 – 50%. It is associated with a range of side effects ranging from hot flushes to increased risk of endometrial cancer and deep vein thrombosis.
Prophylactic oophorectomy (removal of the ovaries): In premenopausal women this procedure has a similar benefit to Tamoxifen in terms of risk reduction and also avoids the need for ovarian surveillance which is at best imprecise and unreliable.

Prophylactic mastectomy and breast reconstruction: This is a big operation, but available data suggests that it may reduce risk by up to 90%.

Please note: I am not a medical professional, only speaking from experience.

 

FORCE Facing Our Risk Of Cancer Empowered

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…..

 

 

Estrogen, living without it…

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