Dear Julia (Louis-Dreyfus)

Dear Julia

One year ago today I was walking in the boots that you are currently wearing.

What can I say to you, and all the other women diagnosed with breast cancer today, as I look back on the past year?

Well, first of all, tough luck. 1 in 8 women in America, 1 in 10 in New Zealand last I heard. Far too many, but still you have to be pretty unlucky really to be that 1.

One thought that has stuck in my head for the last year is why? Why is there what amounts to an epidemic of breast cancer among the Western World’s women. Cos when you start looking, it is a Western disease for the most part. Or more particularly the steady increase in occurrence rates is higher in our culture than in others. Take Japan, for example. Much lower rate of breast cancer among Japanese women. Why? One reasonably logical explanation is the higher intake of iodine in their diet. Could it really be that simple? Maybe, for some cases. NZ soil is known to be deficient in iodine and selenium.

Let me linger on this particular path for a moment longer – iodine (& selenium) is vital for the thyroid gland to function, and the thyroid gland controls all the other glands that run our bodies. Thyroid glands don’t like fluoride, chloride, bromide – stuff that is in our food and our water – it bungs them up. Iodine cleans them out.   Women in their late 40’s start having massive hormonal changes in their bodies, and if your thyroid gland is not keeping things in order, you will be over run with estrogen…. this is a very bad thing. I am paraphrasing here, but I wish someone had told me all this 6 years ago when I first had an abnormal mammogram. Of course no drug company is going to invest in research into iodine – there is no profit to be made there. Luckily there is a charity in America that is doing the research, and you can buy your own iodine supply on-line to support them. For anyone who has had ‘lumpy’ breasts or an abnormal mammogram, can I politely suggest you check it out for yourself.  www.breastcancerchoices.com If may just save you having to deal with cancer. At the very least it won’t do you any harm. And if you are recently diagnosed, never too late to start.

Another thing – alcohol. Sorry Julia, and everyone else, but please, please, stop drinking alcohol. My simplistic understanding of the situation is that our liver cannot process alcohol and estrogen at the same time. So, menopausal and therefore hormonally out-of-control women, just stop it. I can tell you what happens. Firstly you lose a bit of weight even trying, lets face it that is not what is at the top of your mind right now, but you also lose your taste for it. I have sipped red wine (the oncologist I was seeing is not convinced about alcohol and said it would be OK…) and it tasted dreadful. Champagne – how I would love to drink a glass of champagne. But here’s the thing – when the stakes are high enough it is surprising what you will forego. It isn’t exactly fun being the sober one at the party, but it is more fun than not being at the party. Is it worth drinking alcohol? I think not.

Back to those dark days of diagnosis; my advice – take a deep breath and a few days. You had cancer the day before you knew it, maybe years before you knew it. Taking a few days to absorb your new situation won’t make any difference. What matters now is getting yourself prepared for what lies ahead.

I know some people have absolute trust in the medical profession, and are more than happy to place themselves 100% at their mercy as it were, to do the best they can for them. Doctors will do that, according to the latest information and protocols and whatever else. Without doubt, they do their best.

My hesitation is that they cannot know you as well as you know yourself.

I went to the first surgeon’s appointment armed with a piece of paper and at the very top in big letters it said “I want a complete mastectomy. I have no interest in saving my breast”. Why? Well, because of my age, and because for me, I wanted the least surgery, the least invasive treatment, for the maximum benefit. In NZ most, if not all, women who have a partial mastectomy also have radiation treatment. If you have a complete mastectomy you may not need radiation. So the surgeon talked about something else I had never heard of but he meant a partial mastectomy. He made a very convincing argument to save most of my breast. God alone knows why he thought he needed to do that. Because of that, I was lined up for a hook wire (another invasive and expensive procedure so they can find the tumour on the day) and an MRI scan.  I called him the next day and said I wanted a full mastectomy, which he said was my decision.  He told me just before the operation that I was right – put it down to women’s intuition.   No hook wire, no guaranteed radiation (I didn’t need it in the end). I knew that. I JUST KNEW. Trust yourself. Listen, think, but also find out what you need to know and go to the appointments informed and with a list of questions.

I spoke to women who had survived breast cancer. The ones who retained control over their lives were in much better shape. One poor soul was really scared about not seeing the oncologist any more, after 10 years. What ought to have been a moment of great celebration, was in fact a source of deep fear. She had followed the advice given to the letter, ended up having several operations that have left her with two partial breasts of uneven size and a reliance on anti-depressants. We are not all the same. I wished at times that I was one of the trusting souls of this world, but I am glad now that my life remains in my hands. More on that later.

Two things I found most helpful in all the web searching – http://www.cancer.net  provides information from the American Society of Clinical Oncology – and a publication called ‘Questions to ask the Doctor’. Useful to read through it to see what lies ahead, and the issues that you need to know about. Another publication called ‘Your Guide to the Breast Cancer Pathology Report’ from www.breastcancer.org comes complete with a list of definitions and space to fill in your own information.

Seems to me there is a strong bias towards ‘saving your breast’. For young women, I get that. For everyone else, seriously, once you have your clothes on, no one will know what your breasts are. Implants? A piece of your stomach or back muscle appropriated into breast-reconstruction duty? A pair of socks stuck into a bra? Does it matter? At the time I met the surgeon I was absolutely sure I was not having reconstruction. My partner asked me if I would be more confident having a reconstruction. Seriously? What comes out of my mouth has nothing to do with what is or isn’t supported by underwear. Around that time there was a news item about a young Syrian girl who had borne the brunt of the mad war raging in Syria. She had lost not just an arm but also her whole shoulder joint. Plastic surgery belongs to those people, not the vanity of middle-aged women.   The ‘save-your-breast’ emphasis should be balanced with a discussion about who you are and how you see yourself, both mentally and physically. If you really feel the need to be defined by having two breasts, I feel a bit sad for you actually, but help is at hand. Just be aware that your new appendage will never ever feel or act the same as a breast.

Surgery is OK – I just took panadol every 4 hours for a few days.  Seems is not that much nerve tissue around breasts, so it is surprisingly low-pain.  Mind you I was lucky, no lymph nodes taken out.   Get surgery as soon as possible. Most surgeons work in both the public and private system. The difference is timing. For me, 2 weeks after diagnosis the offending material and the breast it had grown in was removed. Gone. Done. I was very happy about that.

Be aware that despite what they say on the day, the pathology results may take longer.   Use the time to get your head around the next lot of decisions. Chemo? Radiation? I see in today’s paper they are trialling doing chemo first. Doesn’t make any difference to survival rates apparently, but it makes sense in some ways to shrink the tumour first. My new ‘bosum buddy’ had her treatment that way around.

Post-surgery it all becomes statistics. If this, then that. If that, then this and this. I believe you must make informed choices. I went for the chemo. It made sense to me that there was a chance some cancer cells had escaped – especially as there was a 10 day delay between the biopsy and the surgery – something I would have questioned if I had known at the time. My then oncologist filled out a prescription for a bucket load of drugs to counter the effects of chemo. I didn’t take most of them. What I did, around surgery and when possible, was get moving. Out in the fresh air. Made meditation a priority for the day not something to do when I remembered.   And I found a nutritionist who plied me with another bucket load of supplements to help my body deal with chemo. I believe that between these things (exercise, supplements and meditation), it worked for me. Chemo was not easy, but it wasn’t devastating either.

The other thing I did, really early on, was decide the chemo was stardust (yes, I know) come to take away the cancer. Sounds mad. My sister scoffed. However my cancer looked like a comet to me – a big blob with lots of little blobs out behind. In my head, when the chemo was being pumped into my hand, I imagined that it was stardust come to collect a lost comet and take it back to the skies. I welcomed it, I chanted all this in my head when I was out walking. I think it helped. At no point did I see chemo as poison come to take me to the brink of death.

Without sounding too dramatic, that stuff is seriously bad for you. I was really surprised when the lovely nurse swopped the empty chemo bag for saline and said “we have to start getting this out of you. You have to drink A LOT over the next 3 days to flush it out.” I expected to be rolling around on the floor making sure it was getting to my extremities. Nup.

What else do I think looking back on the last year?

I had plenty of support and help from friends and family. When I got home from surgery (one night in hospital) it looked like someone had died. Flowers everywhere. They do die. At some point you realise that regardless of how much you are loved and supported, you have to deal with this on your own, in your own way. There will be tears, of course. I had to all but physically stop myself thinking about leaving my children behind (they are all grown up but still). That was the most upsetting thing for me. I am not worried about my life, but the thought of missing out on theirs made me too sad to stay in that thought. We are all dying, every day. The thing with cancer is there is no real end. Not for me, anyway. Maybe in 10 years, or maybe in 15 years, I can relax. Or like Olivia Newton-John, in 25 years, there will be a recurrence. I don’t think about that. I told my sisters that if I check out of this life early I will leave them to the incontinence, deafness, resthome living. What I allude to is the need to live now, not in the future. We should all do that, within reason. Bit of a challenge to decide exactly what you do want to spend your life, long or short, doing, and who with. Most people don’t get that opportunity so grab it.

Chemo – 4 doses – each day crossed off on a chart – is a test of character. I stupidly missed a mammogram two years ago because I thought it was silly to have one before summer, much better to get cancer in the winter, if you have to. Then I got busy and didn’t have it at all. Actually getting cancer in summer is OK because on the nights when you can’t sleep it is warm, and you can get up and sit wrapped in a blanket and look at the stars. You can go for a swim and feel weightless and carefree just for a while. It is holiday time so everyone is happy. I really noticed the change of seasons, partly because I had time to.

I did not predict a falling out with the oncologist over longer term hormonal treatment. He is a very well-regarded professional who takes great comfort in statistics. “If you take these pills, you will reduce the likelihood of a recurrence by (another) 5%”. Post surgery and chemo, I sit at about 85%. Hormonal treatment would, statistically at least, take me to 90% chance of not dying of breast cancer. Except my life would be living hell. Imagine living every day with the full on symptoms of menopause. Hot flushes, insomnia, mood swings, osteoporosis – and those are the COMMON side effects. We had a rather heated debate. He is single, no wife, no children. No working knowledge of menopause. No first hand experience. He admitted 30% of his patients stop taking it. Because they would rather risk dying of cancer than living a nightmare.

Guess what? There are alternatives. I will admit they are not yet proven in clinical trials. Why is that? Cynically I think the drug companies are raking it in. Let us not forget for one moment they are driven by profit. Not some higher calling to cure cancer. Unless there is money to be made. I believe alternatives matter, and will in the long run be the answer.   I told my man I expect in 5 years time he will be apologising to me. That was before he fired me as a patient. Do your research. Check out what is available in your country. In NZ we do not have any oncologists prepared to look beyond what scientific medicine offers. Shame on them. Even my ex-oncologist conceded that meditation helps. He would not go much further than that. The information is out there – I implore you to look. Take charge of your own well-being.

My take is that most adult cancer is a failure of our bodies to deal with a dis-ease – physical or mental.   Take the best of modern treatment – surgery, chemo, radiation if it has spread – to get rid of the cancer, then take charge of your body and your life to create an environment that is not hospitable to cancer. No alcohol, sugar, dairy, red meat, refined wheat. Get stuck into quality vegetables, nuts, seeds, filtered water. Laugh a lot. Love a lot. Love yourself a lot. Get fit. Lose weight (I am 10kg lighter than what I thought was my ‘goal’ weight; who knew?).

I found my ‘tribe’ at a centre for anyone with a life threatening disease. Weekly art group mornings, attending counselling, attending a group preparing for the transition back to a new normal after the treatment is over. Massages, facials, reiki therapy. Bliss. Seek out what you need. There is great comfort in being with other women who are in the same predicament. For a start you can laugh about wigs and scarfs. Can’t forget the woman who was sitting alone that we invited to sit with us who whipped up her top to show us her new boobs. They were great, I must say.

Today is the anniversary of my diagnosis. October the 17th will be anniversary of my surgery, November 22nd the anniversary of my first chemo and February the 14th the anniversary of the official end of chemo. I have been pondering on whether the period between diagnosis and ‘cure’ or say, surgery, could be a sort of Lent or Ramadan – an annual time of denial of pleasurable things in order to reflect on life and living. Tempting to treat it like that but there isn’t much left to give up, frankly!

I have been feeling surprisingly emotional today. Perhaps because at the time you just have to deal with waves of information and appointments and fear and shock and you don’t really stop and think too much.   Looking back over what I hope is the worst thing to ever happen to me makes me wonder what I am going to do. I have decided this week I am withdrawing from a business proposal because it is time I stopped doing things just because I can and I should start doing things because I want to.

Julia, and all you others, I wish you all the best for a happy ending to your dance with cancer.  I hope that in a year’s time you will be laughing and smiling and your hair will be back although still short. The worst of your active treatment will be behind you. You will be fit and well, confident, loved and loving.  Totally alive.

Bless.

Stonehenge on a stormy afternoon. Life is for living, stones are for the dead (they think).

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About Ngaire Wallen

Landscape designer, thinker, partner, mother, reader, wanna-be writer keen to inflict my thoughts on the world.
This entry was posted in The human condition, Uncategorized and tagged , , , . Bookmark the permalink.

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