Betrayal: Body of Evidence…

"Betrayal" 2008 - photograph from the '1 in 9' exhibition by Tracey Derrick -- breast cancer journey

BETRAYAL…

“So, my future was clouded by new uncertainties – what are my chances of survival? The body tells a new story and so demands a reinterpretation of recent life history.

Is it no longer to be trusted? Why has it withheld such crucial evidence? Whose side is it on anyway? While the mind has been full of stories of life, the body has been planning another story: the threat of death” (Stacey: 1997:5).”


Did you experience a sense of betrayal at your diagnosis? How did you process these feelings?

 


TAKEAWAY: Episode 1, Act 1 of ‘I Am Woman Leap of Faith’ where Tracey Derrick is confronted with a turning point in her life and has to make the ultimate decision.

‘I Am Woman Leap of Faith’ television series: produced by Lauren Groenewald and Miki Redelinghuys of Plexus Films &  Lisa Chait (www.lifestories.co.za).

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Basic banana body builder

basic-banana-body-builderIf your appetite is suppressed, if you need to build up muscle, if you need to put weight on, or if you are worried about insufficient protein.

4ozs (100g) plain tofu (silken tofu makes a smoother drink)

1 pink (500ml, generous 2 cups) soya milk

2 bananas

2 tablespoons organic maple syrup

1 tablespoon slippery elm powder

2 teaspoons vanilla essence

Whizz together in a goblet blender or food processor until smooth and creamy

If you have difficult drinking from a glass, use a teaspoon and eat it from a small bowl like dessert, or add more soya milk to thin it and use a pretty straw.

 

Try any of these additions or flavour variations

2 tablespoons ground almonds

2 tablespoons cooked brown rice/millet/oats

Any fresh fruit – try mangoes for a real treat

Soaked or cooked dried fruits

1 teaspoon honey or concentrated apple juice

1 tablespoon organic, sugar-free preserves

THANKS TO DR ROSY DANIEL, WHO HAS GENEROUSLY SHARED THE CANCER LIFELINE RECIPES WITH US. THIS RECIPE IS FOR THE TOUGH TIMES, FOR USE WHEN YOU ARE VERY ILL, DURING TREATMENT, WHILE THE APPETITE IS POOR AND THE WEIGHT LOW.

 

My Diagnosis. My Partner.

A MUST-READ:
What If Husbands Had a GPS to Help Wives With Breast Cancer? 

 


This is an excellent article via the UK’s Breast Cancer Care organisation we hope you’ll find useful in its honest yet heartfelt approach in discussing the more complicated, painful issues around how a breast cancer diagnosis affects one’s partner.

What do partners of breast cancer patients care most about? In spite of what you may imagine or fear, studies show that the answer is simply this: Their loved one is alive and feeling well. The loss or alteration of a breast is almost meaningless in contrast. ‘I don’t care what they take from you as long as I can see your face’ is a common sentiment. Most caring partners (both men and women) see their lovers as having many parts to love, and as being more than the sum of those parts.

Nobody is promising there won’t be ups and downs. While you’re worrying about feeling less attractive, your partner is also dealing with worry, anxiety – and maybe even guilt, wondering: ‘Could I have been responsible? Could I in some way have contributed to the cancer? Will I become radioactive if I touch her, if I touch her breast? Is her cancer contagious?’ And (probably feeling guilty or frustrated — or a combination of both),:”When will I be able to worry about myself for a change?”

It may be hard for you to figure out your needs and concerns, let alone tell them to your partner. You don’t want to make light of what your partner has already done for you, so phrase your requests as carefully and positively as possible: ‘You’ve been working so hard, doing so much—and it’s made a huge difference. But what I really need right now is to be close to you and tell you what’s making me nervous and anxious. I need you to listen, and maybe just hold me.’

COMMUNICATION IS KEY!

Communication—talking to each other, listening to each other—is the basis of any intimate relationship. But most people haven’t a clue about how to talk about something as big as cancer. So here are some tips to get you started:

  • Find some time. Most couples have limited time together anyway. A breast cancer diagnosis just adds more distractions. Even when you do get to talk, there are so many interruptions the conversation may go nowhere. Schedule some time in a quiet place where you know you won’t be interrupted.
  • Start somewhere. Begin by talking about something comfortable and manageable—your vacation plans, even the weather. Once you’re talking, then you can work the conversation around to your fears, concerns, how the illness has changed you, and the importance of your relationship.
  • Talk, talk, talk. Even if your partner isn’t a good talker, that doesn’t mean he or she isn’t listening. You may need to do most of the talking yourself but, believe it or not, what you’re saying WILL be heard and it WILL sink in. Stop along the way to get feedback. Eye contact and touch can give your words greater meaning and emphasis.
  • Reassure your partner. Your partner may feel that you’ve got enough to deal with without listening to someone else’s fears and concerns. Make it clear that you WANT to hear how he or she is feeling, that you’re both in this together.
  • Bring in a third party. If you’re both having trouble communicating, a visit with a therapist can get the ball rolling.
  • Write it down. Sometimes it’s much easier to write how you’re feeling in the form of a letter or even a journal entry than to say it face to face.

Breast cancer is not good for relationships, but good relationships can be made stronger by sharing hardship. Your partner may have doubts – and miss and mourn the ‘old’ you, just as you yourself may be doing. But that doesn’t mean he or she is prepared to trade you in. ‘My husband stood by while I cried and screamed, and he hugged me when I let him get close enough, said Debra. ‘Our marriage is better now than it ever was before.’

Advocates for Breast Cancer - Diagnosis - Husband

Damaged Goods?

If you see yourself as damaged goods, you probably assume your partner feels as you do. But that simply isn’t a given.

One consequence of feeling less than lovable is fear of being abandoned. It’s true that in some cases a man sees his partner’s altered body as a personal reflection of his value—and just wants out. Other partners simply come apart under stress.

Overall, though, following a diagnosis of breast cancer, just as many women leave their husbands as are left by husbands. They don’t want to waste their time in an unfulfilling, unhappy marriage.

Flawed marriages don’t have to come apart, with or without breast cancer. Divorce rates are not higher among couples in which a woman has had breast cancer. Sometimes the shock of a cancer diagnosis pushes partners in a troubled relationship to consider the source of their problem and seek counseling.

Or YOU may be the one who responds unpredictably. One very independent woman became overwhelmed, uncertain, and very dependent when her breast cancer was diagnosed. This new ‘frailty’ devastated her, and her marriage went through a rough spell till she finally returned to something of her old self.

Talking, Telling & Supporting Each Other

It would be nice to have a partner who understands and helps you feel better as you work to get back your old confidence, but that may just be unrealistic. He or she is probably suffering, too, and may be less able to express that suffering than you are. So each of you have all this emotion buried somewhere inside.

Ginny could not understand her husband’s silence. ‘What’s the matter with you? Why don’t you talk to me about what’s happening? I have CANCER! I could die! Say SOMETHING!’ Ginny felt as though she was yelling at a stone wall.

Breast cancer has become so common that most men have someone close in their life who has suffered the disease. There’s no way to predict how any man will respond, but there is no doubt that many men are supportive and prepared to continue the relationship.

Women may find it easier to talk to one another, and lesbian partners may be particularly sensitive and supportive. It is also true, however, that a woman may feel especially vulnerable and personally threatened if her partner has breast cancer, knowing this disease is one that can affect her as well.

About the Writer:

Vicky Cosgrove was married nearly 20 years and had four children, ages 6 to 17, when she was diagnosed with breast cancer in February 2000. Yet after a year in which she had a bilateral mastectomy and reconstruction, chemotherapy and radiation, and began taking tamoxifen, she says her intimate life with her husband has never been better. ‘Maybe it has something to do with feeling that we shouldn’t waste our time, maybe it’s that I feel he’s even more in tune with my needs,’ she says. ‘But he’s just become a much more giving person.’

Advocates for Breast Cancer - Jennifer  and Angelo Merendino
Click on the PHOTO to watch Angelo Merendino explain how he handled his wife, Jennifer’s cancer: ‘I created to survive.’

TAKEAWAYS:

 

Survivor Day: Putting the ‘I’ in Survivor!

As we’ve been researching breast cancer survivorship online this week, we’ve been reminded just what a wide and deep subject ‘diagnosis’ really is. In fact, survivorship can almost only be 100% ‘defined’ clinically – because to each of us, it means something uniquely different. For example, some survivors believe in Pink as a symbol of hope, joy and resilient femininity, whilst others feel that Pink stinks – that it’s a blatant slap in the feminine face of their breast cancer reality. (How do you feel about Pink? Tell us on our Facebook page!)

So because we can only touch on the very tip of the survivorship-iceberg, we’ve created an ABC of Survivorship for you – and included links to more in-depth articles for you to explore!


Advocates for Breast Cancer - diagnosis


ACTIVE ADVOCACY: As a survivor, you are in the powerful and perfect position to be a voice for the voiceless. You have so much practical knowledge and emotional experience to be very effective in raising awareness and driving breast cancer education  forward thoughout our country and all its communities. (Saying that, never allow anyone to pressure you into it unless you feel it’s in your heart!) ***Connect with us on Facebook to see how we can help you get involved!

BOOKS ARE BRILLIANT! Just one example is Stealing Second Base:  A Breast Cancer Survivor’s Experience and Breast Cancer Expert’s Story by Lillie Shockney. Get browsing amongst the abundance of books out there to equip and encourage yourself!

CARE: What exactly is a ‘survivorship care plan‘?

DEFINITION of Survivorship: We want to know what YOUR definition of ‘survivor’ means! Please join us on Facebook and tell us what you think!

E:

FAMILIES & FERTILITY FACTS – and how, as a family, you can understand and embrace survivorship.

Pregnancy after early-stage breast cancer has not been shown to impact breast cancer recurrence or survival. It is often recommended that you wait for some time after completing all cancer treatments (including endocrine therapies) before trying to get pregnant since your body has been through so much. There is no magic formula of when the best time to get pregnant is after you complete treatment. You should work with your doctor to make decisions that are best for you and your family. For more information, visitwww.fertilehope.org or www.myoncofertility.org.” ~ via John Hopkins Medicine (READ MORE HERE.)

G:

H:

J:

K:

LIFESTYLE and its changes that come with being a survivor.

MYTHS (10 of them!) surrounding survivor care.

Your NEW NORMAL: ‘… you’re about to embark on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. Call it your “new normal.”‘ ~ via Gina Shaw for Webmd

OPTIMISE OPTIMISTICALLY: Visit CancerDietician.com to optimise your nutrition and lifestyle – and click here for a delicious resource of their recommended recipes!

PINK: Pink Ribbons, Pinktober and Pinkwashing! As a survivor, has this colour got you tickled pink? Or are you of the conviction we should adamantly think before we pink(Read more about the history of the pink ribbon here.)

Q:

REDUCING RISK OF RECURRENCE: Click here to read about 10 ways you can reduce your risk of breast cancer recurrance.

SEXY SURVIVORS: the video discusses everything as medically as you need to know about every possible issue like menopause, vaginal dryness etc. (Of course, besides the physical side of sex as a survivor, there is the heart-side to it which is just – and if not more important.)

T:

U:

VIDEOS — about breast cancer and survivorship. Click here!

W:

X:

Y:

Z:

(PS. You may be wondering why we’ve left some letters blank? Well, because today is Survivor Day, we would like to suvivors by asking you to fill in the blank letters in the Survivorship ABC with topics most important to YOU! Tell us on Facebook – because ABC wouldn’t be complete without you!)

How One Husband Survived The Battle They Didn’t Choose

Our one blogger, Lisa wrote:

I was supposed to write a post for today about diagnosis – and how it affects our partners… And though I discovered many incredibly useful articles and began jotting down key points for today’s post, I stumbled upon this video of a man telling the love story of him and his wife, and how her breast cancer diagnosis changed their lives… As I type, (tears; I try to blink them away before anyone walks into my office) I have decided to  abandon the very practical blog post I’d mapped out and rather post it tomorrow — because right now, this man’s story will give you so much more than my blog post ever could.

 

TAKEAWAY: (Maybe worth sharing with your loved ones?) Read Angelo’s blog: The Battle We Didn’t Choose and see how he photographed their cancer journey. He says: ‘I created to suvive.’

8

922011 Chemo nurse accessing mediport

 

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After nearly a year and a half of chemotherapy and radiation treatments, a few eyelashes still hang on.

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7

After running her hands through her hair Jen shows me how much is falling out due to chemotheray treament.

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Leaving the Door Open for Hope

So, so many questions… Was my diagnosis adequately explained to me in a way that makes me feel reassured? Did I feel free to ask all the questions I needed to? Did my doctor listen to me with careful compassion?

In her book, On Death & Dying, psychiatrist Elizabeth Kübler-Ross writes the following:

“If a doctor can speak freely with his patients about the diagnosis of malignancy without equating it necessarily with impending death, he will do the patient a great service. He should at the same time leave the door open for HOPE, namely – new drugs, treatments, chances of new techniques and new research.

The main thing is that he communicated to the patient that all is not lost; that he is not giving him up because of a certain diagnosis; that it is a battle they are going to fight together – patient, family and doctor – no matter the end result.

Such a patient will not fear isolation, deceit or rejection, but will continue to have confidence in the honesty of his physician and know that if there is anything that can be done, they will do it together.

Such an approach is equally reassuring to the family who often feel terribly impotent in such moments. They greatly depend on the verbal and non-verbal reassurance from the doctor. They are encouraged to know that everything possible will be done, if not to prolong life, then at least to diminish suffering.”

  • Every patient has the right to have their diagnosis explained to them in a language that they understand and comprehend.
  • You have the right to ask questions until you fully understand your diagnosis, prognosis and treatment options.
  • You have the right to make your own informed decision on your treatment options and to ask for a second opinion.
  • You have the right to refuse treatment.

Make sure, if at all possible, that there is a family member or close friend with you when your diagnosis is explained to you. During and after the diagnosis, you may be in such a state of shock that you will need this person with you to ask important questions you may not think to ask, as well as be your ‘ears’ to take in all the information surrounding your diagnosis. Afterwards, they will be able to reliably relay that information back to you accurately.

You do not have to travel this journey on your OWN. Cancer is a like a PASSENGER that, from now on, will be PART your life. MAKE PEACE with your passenger – and live with it in peace.

 

breast cancer journey abc


TAKEAWAY: If Elizabeth Kübler-Ross’s perspective + ideas resonate with you, please click here for a downloadable + printable PDF of ‘On Death & Dying‘.

Referral Pathways: Waiting. Waiting. Waiting…

What is a ‘REFERRAL PATHWAY’?

A referral pathway is the path a patient has to walk, step by step, in the process of moving through breast cancer. It is intended to ensure that the outcomes of diagnosis and treatment are as proactive and positive an experience for the patient as possible. The referral pathway is also set in place to secure service equality at all levels.

PUBLIC SECTOR: In the public sector this normally means that a patient will start their journey at a primary health care facility in the community from where the patient is referred (via a letter of referral) by a health professional for follow-up to a Secondary Hospital. Once a diagnois is made by doing a mammogram, ultrasound and a biopsy, a patient will then be referred to a  Tertiary Hospital where the ‘staging’ of the illness will be done via additional tests such as a lung X-ray, liver scan and  bone density test. These tests will help develop the appropriate treatment plan if applicable.

STATE SECTOR: Things are, however, different in South Africa’s state sector where the same process as above can literally take entire months to be processes. Result? By the time the patient reaches the tertiary hospital, the illness has progressed to a later stage.

referral pathways breast cancer advocates for breast cancer

 

We are privileged to have a few truly effective walk-in breast clinics in our country – such as the ones at Cape Town’s Groote Schuur Hospital and at Johannesburg General Hospital where patients can go straight to the specialised breast clinic, where all the above-outlined steps are done in a very efficient manner. We need many more of these cancer screening clinics that will expedite prompt diagnosis and work-up to ensure that effective treatment is provided — sooner rather than too late!

READ MORE HERE:

“Stage at Breast Cancer Diagnosis & Distance from Diagnostic Hospital in a Periurban Setting: a South African Public Hospital Case Series of Over 1000 Women.” ~ via the National Centre for Biotechnology Information

 

Compared to the state sector, the private sector’s referral pathway is markedly simpler and shorter, making access to breast cancer diagnosis and treatment easier and more efficient. Your journey could look like this:

 

 

Day -4 Referred by GP
Day 0 Seen in clinic. Assessment by surgical team, X-Ray and histopathologist
Day 1 The Multi Disciplinary Team (MDT) co-ordinator collates the information on all patients who have abnormal results from the clinic – then guides and drives the rest of the pathway communication regularly with the patient and the rest of the team
Day 3-7 Discussion at the MDT meeting: the whole team meets to discuss the results for patients and concur on a patient treatment plan. (Treatment plans vary from patient to patient.)
Day 9+ Pre-operative assessment with pre-assessment nurse and the breast care nurse if mastectomy is necessary.

Pre-planning for radiotherapy if adjuvant therapy is applicable

Pre-planning with oncologist for chemotherapy if adjuvant therapy is applicable

Day 14 Surgery/chemo therapy/radiation therapy starts and continues as required for breast cancer standardised treatment guidelines.
Day 15+ Discharge if operated
Day 17+ Re-discussion at MDT meeting to plan further treatment if necessary after surgery
Day 18 – 21+ Seen at clinic with final and full results of surgery
Next Phase Start of further therapy

Hormone therapy

Chemotherapy

Radiotherapy

Follow-up with Oncologist Usually 6 – 12 months for up to 5 years

 

 


In the absence of a breast health policy in South Africa, the time linked to a referral pathway is dependant on where you live, how soon you can be referred to the facility which will then confirm the diagnosis and the actual waiting times between screening, diagnosis and ultimately, treatment.

 

The driving aim of a BREAST HEALTH POLICY is to ensure that each and every single person in our country has equitable and accessible access to effective and efficient breast health services.  This is a basic health right! It is a right we all havedeserve and must insist on as South African citizens and human beings!

Make the difference only YOU can make by Liking our Facebook page or joining this critical conversation on Twitter! Share our FB posts and email off our blog articles to those you know care! This is how you can stand with us to adamantly ensure this policy is drafted and implemented timeously to save the lives of thousands of women in South Africa!