Why?
Vision distortion 18 months post chemotherapy

Not to alarm those who are about to read this, the message here is to keep vigilant about your sight. This post has special meaning for those that have noticed changes to their vision after receiving chemotherapy more than a year later and are taking anti-hormone treatment such as letrozole.

I have been taking Femara for over 18 months with a dosage of 2.5 mg tablets daily. This medication is usually prescribed for women who are postmenopausal and have been diagnosed with hormone receptor-positive, early stage breast cancer.

Please note this is NOT medical advice rather an observation which I am sharing with you and encourage those women who have received this treatment, to have your eyes checked thoroughly - not just for visual acuity, have the macula checked including your eye pressure.

Six moths ago I had suffered a severe migraine and thought nothing of it but later noticed my vision became more blurry despite wearing glasses with prescription lenses to correct myopia.

As eyesight is a means of keeping one’s independence ongoing, I made an appointment with a local optometrist and discussed my changed vision. I had various tests done and I had lost three lines of vision on the chart including some problems with peripheral vision. I was also given an Amsler Grid to monitor my eyes. I had noticed that in my right eye, the eye that has been affected, saw wavy distorted lines on the grid with the centre disappearing back and forth.

After these tests were completed, I was then referred to an Ophthalmologist for further investigation. It appears my right eye has lost the ability to distinguish some colours also.

The ophthalmologist has since referred me to the eye hospital where they specialise in diseases of the retina. After more probing, scanning, electrophysiology testing, I am still uncertain what is causing the right eye to have vision problems. When I know I will report the findings.

I suspect that Femara may have something to do with this. It is not just my observation that suggests this. I have done some research and came across a peer reviewed study of cases similar to mine. Title: Breast Cancer Medications and Vision: Effects of Treatments for Early-stage Disease, Eisner. A, Shiuh-Wen.L,  Current Eye Research, 2011. 36(10): 867-885. Link here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3205820/

There is not much more to report only that again I encourage you to have your eyes tested. Vision mostly worsens as we age but try not to equate this normal occurrence with serious side-effects of medication - they are two different things and should not be taken so flippantly. Your sight depends on it!

To your health.

Verity


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My hero

In life we travel along a natural path of events, experiences and day to day activities that settle into a rhythm of ebbs and flows until one day we hear or see something that stands out and startles our existence.

Some of these can be terrifying whilst others can be truly awe-inspiring. Today has been one of those not so much life affirming experiences but a synchronising of like minds that hit me with an aha moment. I was listening to a radio program this morning, nothing out of the ordinary, when I was drawn deeper into the radio interview,  it suddenly came to me how I would determine what a hero should be. Call it arbitrary but it is what it is - in my mind anyway.

The radio interview I was intently listening to was with Dr Nawal El Saadawi. I am not sure if anyone has heard of this person but they really should. I was soon to hear how amazing a person she is. Not just a tireless advocate for human rights but a Doctor of many degrees including a medical one. Dr El Saadawi uses her extensive knowledge and experience to benefit those whom have no voice. She was and still is considered outspoken by her folk back home in Egpyt  - so much so she was imprisoned during the time of Anwar Al-Sadat’s regime.

According to Wikipedia, Dr El Saadawi was imprisoned for one month more after Mubarak rose to presidency but it was from her own words, stating she was incarcerated for longer than that. Shortly after her release from prison, Dr El Saadawi was taken to the new presidents house - to give her a lecture!!!! As Dr El Saadawi did not commit any crime, she left the president’s house stating that she would sue the government. Some time later, she was victorious with a win against the government for false imprisonment.

In my eyes, Dr Nawal El Saadawi is a hero. She is famous for writing that “Danger has been a part of my life ever since I picked up a pen and wrote. Nothing is more perilous than truth in a world that lies.”  I would like to correct her on this, and that is, I think Dr Nawal El Saadawi is not dangerous but gifted and it is with this gift her powerful words are making tsunamis globally, especially in the human rights area of female gential mutilation. 

If you wish to hear this wonderful person being interviewed please use the link below or type in your internet search engine: BBC Age of Reason: Dr Nawal El Saadawi.

http://www.abc.net.au/radionational/programs/lifematters/bbc-age-of-reason-nawal-el-saadawi/4730274

Sincerely yours

Verity Constance


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Challenging congnitive impairment post chemotherapy

Today (30/04/2013) I was talking with my beloved about acquired brain injury as a result from chemotherapy. Whilst I have been lovingly supported during my bout with breast cancer and the adjuvent therapies including chemotherapy last year, I did not expect an emotive reaction that disregarded very real symptoms that are ongoing.

It is well documented that chemotherapy can cause adverse cognitive changes. According to Ahles & Saykin (2012), a reduced activation in frontal areas, especially for working memory has been noted. Refer link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329763/

Apparently retrieval of remote memories are not affected and this I can relate to. In a recent conversation with my beloved, I was able to remember a child that I have known for a while and needed to recall the name. The memory was not at all difficult as it came to me without much ado.

Today, almost 18 months post chemotherapy I am still finding some day to day activities difficult that require short term memory skills only to find myself left with frustration because I cannot work to the best of my ability. I have also noted some executive functioning impairment such as the ability to plan and to initiate appropriate reactions which are delayed at times. Due to these issues, I have chosen to be part of a study that looks into these complaints and hope not only to help others with the findings that will produce an executable program that is user friendly but also improve my memory.

They say one of the secrets to a long and fulfilling life is not only diet and exercise but also having a nimble mind. We often neglect this part of our body - the brain and then feel the frustration of reduced agility in all that is mental later in life. It doesn’t have to be and so I leave you the reader with this - spend at least 10-20 minutes a day over a month doing something that requires memory recall. It could be a game of memory, cards or chess. Who knows, you may find an improved memory with an added benefit that aids elevation of mood!

Here’s to your happiness and health.

Verityimage


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Barley Risotto

Barley Risotto (serves 2)

Ingredients:

Approx 150 gms of pearl barley (cooked to packets instructions and drained)
1 chargrilled red pepper
5 springs shallots sliced diagonally
1 can smoked oysters
250 gms bacon
Tblspn rice bran oil (for sautéing)
50 gms pine nuts
50gms Parmesan cheese freshly grated (to serve)

Method

Place rice bran oil in frypan together with shallots, bacon sauté until golden
Incorporate the cooked pearl barely into the frypan with the sautéed shallots and bacon.
Gradually add pine nuts, smoked oysters and chargrilled red pepper to the frypan

Once heated through, grate 50gms of Parmesan cheese into the frypan mixture and stir until fully incorporated.

Bon appetite!


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showslow:

Noches, Illustrations by Melóm.


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Australian Political Ramblings

As an Australian, I often think what a miss-mash of people we have ruling our continent/island. We have a minority government that seems to be faring well financially, despite the global financial crisis (predominantly of European flavour) nipping at our heels. Then there are wrangles within party rooms dominated by constant bickering, which sometimes feels like we are on the cusp of a parliament dissolution, held together by a sliver of cohesion.

Observing the NSW parliament today, I see a back flip by the O’Farrell government that will allow shooters loose in our national parks, supposedly targeting feral animals. Have I mentioned owning a gun is illegal in Australia (except for those with permits such as farmers)?! The main purpose of this law is to reduce death rates by fire-arms. Imagine a person toting a gun with an unstable mind - I don’t think feral animals will be the target!! Image via David Shoebridge MLC a Greens member of the NSW Upper House http://davidshoebridge.org.au

Conservation hunting Slider

On the global political scene, we have our Australian persona non-Grata and expat Julian Assange in the spotlight at the moment, who is facing serious charges (albeit trumped up by the Swedes) of sexual assault much to the contentment of the USA. Some would say he’s been a naughty boy but whistle blowers are never treated with much respect despite standing up for wrongs committed by society. I would need another post to go on about Mr Assange and his fatal attraction for trouble but I shall refrain from further elaboration here. Image via ABC News.

Assange sports Anonymous mask in extradition ruling run-up

I guess to me this feels like a Greek comedy/tragedy where infighting, back-flipping and sending dissidents to foreign lands are the norm….. oh my - how history repeats itself even when compared to classic literature.


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Why did I get breast cancer?

This is quite a defining moment for me as publicly I have kept this part of my life quiet. I wrote this because so many people I have come across are being diagnosed with cancer. It is a frightful experience but it doesn’t have to be. I am writing this truthfully so as not to mask some of the unpleasant aspects of treatments but also to eliminate fear. Knowledge = power and is an important tool to employ when under attack.

Breast cancer can be a very confronting moment as is with any life threatening or chronic disease. It is how you choose to deal with it that can make your experience tolerable. Don’t get me wrong, it is justifiable to think this is too hard and I’d rather just die….. but some how buried in our lizard brain, our most primitive instincts begin to kick in. I chose to swim.

In the initial diagnosis you are left with anger and terror because it is fear of the unknown that you feel mostly. With fear, some real frightening thoughts cross your mind…am I going to die? Looking back now with those fears assuaged, I can think more clearly and objectively. The realisation which is not rocket science, is that we are all on borrowed time no matter what your situation is - we are all going to die one day - that is a reality.

Hindsight is a wonderful thing is it not? But at the time of diagnosis you are not given this wonderful third eye of wisdom. After the initial shock I decided that this was a chronic disease and not a death sentence. Hence I began a personal battle. It was not really a fight of David/Goliath proportions but rather a quiet steely defiance that took over. To describe this best would be to compare it to a journey something like the Camino de Santiago or simply known to the English speakers as the Way of St. James. It is a journey where you go back to the basics and learn more about yourself, being your strengths, weaknesses and capabilities. For some it would have the spiritual element attached but for me, I saw it as a journey of experiences - the good, the bad and the ugly.

My avatar is a reminder of when the walk began- back in the hospital chair at the diffusion centre taking in horrific chemicals that even the hardened drug addicts would shy away from. Every round of chemotherapy left me swollen, nauseated and unable to move around with ease. On top this, I had to take an extra cocktail of antihistamines to ward off major allergic reactions suffered as a consequence of my body trying to reject the absorption of Taxotere, the main drug used in chemotherapy for breast cancer.

In comparison to the chemotherapy, the lumpectomy was like suffering a deep cut but manageable with pain tolerance. The chemotherapy was tough because your body is being poisoned and trying to cope with being under attack. Then there is the continual blood samples needed to ensure that the body does not suffer from neutropenia, where your body’s ability to fight infection is virtually non-existent.

After four rounds of chemotherapy, I had a hiatus of three weeks before radiation therapy commenced. Some have much more chemotherapy sessions than this so I was grateful for small mercies. Before you commence the radiation part of your cancer treatment, you need to have a mapping session to determine the best angles to burn away any remains or traces of cancer cells. This is crucial and the most effective part of your treatment.

So I have been slashed, poisoned and burnt - a bit like a garden where invasive weeds take over and need a brutal regime to eradicate them. The radiation therapy was not so bad but it could leave you with substantial burns to the surrounding tissue near the surgical scar.

I was given some advice (non-medical) before I commenced radiation treatments to apply a powdery substance to the areas that were going to be subjected to radiation. Many people have used this method and swear by it like I do. I always exercise caution though when applying substances not used before. Apply it on an area of your body where it is not subject to friction such as the inner part of your arm or wrist.

The substances I used were simply pure white clay and jojoba oil. You may wish to add some lavender oil too but be careful with essential oils they can produce allergic reactions. The white clay is not that easily obtainable so ask around, usually a naturopath or health food store will know where to order it from. If you are having trouble ordering it, then I am happy to help you getting in contact with suppliers. I started with applying the jojoba oil and then applied the white clay with a large make-up brush. I did this religiously two weeks prior and four weeks after radiation. I did not suffer any burns or weeping sores. It may not work for others but I really swear by it. I think the white clay somehow absorbed some of the radiation and also provided a protective barrier to the areas that were irradiated. The jojoba oil is something similar chemically to our body’s sebum so no known skin reactions were noted with applying this either.

Another shock ensued approximately four weeks after radiation therapy. I developed another lump….. but this time thankfully it was only a seroma. A seroma is a pocket of clear fluid that can sometimes develop after surgery AND radiation therapy. This unfortunately was not advised by the radiation oncologist and would like to assuage any fears to others that are going through breast cancer treatments. But with any new lump discovered please make sure you get it checked out medically. It is better to feel relief than anguish.

Lastly, I would like to recommend a book that has been written by a Breast Cancer surgeon, FOR patients, carers or those wishing to have peer reviewed and thoughtful information, presented in a manner that is easily read and understood. It has equal amounts of medical jargon but it is written simply. The name of the book: Breast Cancer: Taking Control was written by John Boyages, MD, PhD. It is an excellent resource to have - it not only aided my understanding of cancer but has helped a few people since my diagnosis and subsequent “cure”. This book is available almost anywhere but I recommend ordering it from Amazon if you wish to have it quickly.

Here’s to good health and remember to have your regular medical check ups and scans it is necessary for the preservation and quality of YOUR life.

Verity Constance


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WHAT IS YOUR EARLIEST HUMAN MEMORY?

Receiving a doll as a christmas gift at the age of 2. I am not sure why this has left an impression on my brain as I did not like playing with inanimate objects. Later in life I learnt that it was a western technique of enforcing stereotypes


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Question everything

Question everything


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