Did I do this to myself?

I can’t get over the ‘why me’ phase. Every day I ask myself what could I have done differently. I can’t change the past but maybe I can try to influence my future.

What are the downsides of eating well, exercising more, and reducing stress? None, right? So why don’t we all do that? I always thought I lead a healthy life, but apparently I have exposed my body to some cancer causing chemicals or other factors that made me develop cancer. I will never know what caused my cancer, maybe it was the polluted air in London, the fact that I didn’t manage to have any children (although I tired), or because I took the pill for so many years. Was it because I didn’t eat organic, or because I had a stressful life? Was it because I am tall? A woman? White? Apart from nutrition and fitness, all the rest seems pretty much out of my control. Should I have exercised more, eaten less or healthier? I was never fat, I always exercised, I cook at home and don’t eat processed food, I eat plenty of fruit and vegetables and never had any health problems before. In fact, I never realised how healthy I was, how fit I was and how happy I was, until this happened.

If our body knows how to fight cancer, I am determined to help it with a better diet, exercise, less stress and less exposure to carcinogens. By doing this I will not only feel like I am in control, I will increase my chances of leaving longer cancer free.

Doctors don’t tell patients to exercise more, be thin, eat healthy, avoid carcinogens and reduce stress to build natural defences against cancer. All is focussed on early detection and treatments, not prevention. This is wrong.

I read somewhere that breast cancer incidence has increased by more than 50% over the last 25 years. This is quite alarming because, although treatments have improved significantly and the survival rates have increased, not much seems to have been done to prevent it from happening in the first place.

I don’t think it is random luck (or lack of it!), it is the environment we live in, the modern life-style we lead, that are disrupting our hormone balances. The chemicals we breathe, eat and drink are acting as carcinogens.

Presently my biggest fear is to have recurrent or secondary cancer and I want to make sure I do what I can to stay healthy for the rest of my life but it is very hard to do so when I don’t know what exactly made me have breast cancer in the first place.

Pesticides, plastics, the pill, stress, etc are all hormone disruptors that can mimic the role of oestrogen and stimulate the growth of hormone sensitive cancer (like mine). It hasn’t necessarily been proven that oestrogen can cause breast cancer, but high levels of oestrogen can stimulate the growth of the cancer cells. That is exactly what Tamoxifen is supposed to do: block oestrogen receptors.

Having an oestrogen receptive cancer is in a way good, it means that there is an extra treatment available, Tamoxifen, which is proven to be effective. However, although Tamoxifen may increase my life expectancy, it definitely decreases my quality of life. I have been taking it for about two months now and the side effects are just getting worse and worse. A good night sleep is something I don’t know the meaning of anymore and having menopause symptoms at my age makes me feel old, too old. Having hot flashes during hot weather is just horrible. I have many techniques to make it more bearable, such as having two glasses of ice on my desk at work, that I can hold whenever I feel a hot flash coming; I have a Chillow which I definitely recommend, it helps me cool down during the many night sweats I have each night; I sleep with a very light duvet and the window open when possible, I dress in layers and only cotton and I take sage capsules. Unfortunately I can’t take Black Cohosh, Agnus Castus or any of those herbs, because it may interfere with the Tamoxifen and may increase my oestrogen levels.

Why is our body so complicated?

Call me paranoid, but I started using glass containers instead of plastic, I try to use only BPA free plastic, I rarely eat canned food (apart from the odd bean or tuna can), I use organic beauty products without parabens, I eat organic, I avoid dairy products and red meat, and I eat as much antiangiogenic foods as I can (antiangiogenics stop the growth of tumours and progression of cancers by limiting the formation of new blood vessels). Some examples of these foods are strawberries, blackberries, raspberries, blueberries, oranges, grapefruit, lemons, apples, pineapples, cherries, parsley, garlic, nutmeg, turmeric, tomatoes, pumpkin, green tea, kale and dark chocolate.

I went from not wanting to read anything related to cancer to reading everything I can about it. There’s a lot of contradictory information available, and not enough or inconclusive studies available, this makes it a lot more complicated. What I try to do is to find guidance that makes sense to me, that seems logical and harmless.

But sometimes I think that reducing risks means nothing because I know a lot of people who live under constant stress, smoke, drink, don’t eat anything fresh, organic or unprocessed, are overweight and don’t exercise and never got cancer.

Life after cancer treatments

Sometimes I have the impression that some people think that because the treatments are finished (not counting with the hormonal treatment, which in fact also has pretty annoying side effects) and because I normally say that I had cancer (in the past tense), that I am supposed to be positive and back to normal. But having cancer is not like having the flu. When you have the flu, you feel miserably sick but then you recover and get back to normal, without any consequences. With cancer it doesn’t work that way. There are physical, psychological and emotional, financial, social and work related consequences, everything is affected.
Physically, treatments leave behind fatigue, sleeping problems, induced menopause, discomforts caused by surgery and chemo, peripheral neuropathy from chemo, aches and pains, nails and hair loss.
The psychological and emotional effects of cancer and treatments are more complex. I can think of fear, anger, worry, frustration, sadness, anxiety, loss of self-confidence, grief and guilt. With these ones I can deal with, the worst part is being able to find a good balance between uncertainty and hope. I will see my doctors more often than I will see some of my good friends. And each doctor’s appointment triggers a series of emotions that start with fear of recurrence and hopefully end with relief and sense of security. And the emotional consequences are extended to my husband, family and close friends. They too worry and feel anxious.
Financially, being away from work for such a long period has a direct impact on income and having had cancer may also have a long term impact on my career. On top of this, insurances and mortgages will become harder to get.
Socially, I feel very often that people don’t understand me, some people don’t know how to behave towards me, I don’t know how to behave around new people and very often I worry about the changes to my appearance and about what people see when they look at me. I think they don’t see me, but the sick me.
Going back to work requires physical and emotional strength and I really admire those who can work during treatments. I know now that I went back too early. I feel completely overwhelmed, I am way too tired and emotionally weak. I definitely suffer from chemo-brain, I can’t concentrate, or talk and write at the level it is required.
I know that with time I will settle back into my old routines, getting out more, exercising more, and enjoying things in general more. Days are longer and weather is getting better, this helps. I am going to start stepping out at Baker Street station and walk through Regents Park back home.

Hope

For people like me, that had cancer and had to undergo chemotherapy, once treatments are finished all we want is to go on and lead our normal lives. Normal for me a year ago included starting a family, unfortunately chemotherapy, which is in many cases potentially damaging to the ovarian function, has reduced my chances of ever having children to virtually zero. It is cruel and hard to accept, and although infertility is not a life-threatening condition, I find it in a way worse than cancer itself. Before chemotherapy started I did what I could (or what science and medicine offered me) to save some of my eggs, it wasn't as successful as I had hoped and I wish I had read this a year ago: http://www.lifeonice.com/index.php?option=com_content&view=article&id=47&Itemid=27
It is possible to have ovarian tissue frozen and then implanted back once all treatments are finished. It is a new and little-known technique with only a few successful cases, but it sounds promising and I hope it can be developed and used in the future to help women in child bearing age that are diagnosed with cancer and have to deal with infertility.
It has also recently been in the news that new studies have shown that taking Tamoxifen for five years is more effective than taking it for shorter periods of time. It has even been suggested that it should be taken by women at risk of developing breast cancer as a preventive measure. I am more and more convinced that despite the terrible side effects (and I can tell you they are not pleasant at all) I will take it for the full five years. Even if that means that I will be 41 by the time I can even think of having the embryo implanted and try to conceive. There's no point in taking risks, becoming a mother (although with only one embryo I know that my chances of getting pregnant are less than 0,5%) and then falling ill again, it does not sound like a good plan to me.

What’s next?

Today I had my last radiotherapy treatment. I feel relieved and happy. Now my skin can start healing and I don’t need to go to the clinic everyday anymore.
The next step is the hormone therapy, I have to take Tamoxifen for about 1825 days, that’s a long time! And once again, there are undesirable side effects such as hair loss (great, just what I needed!) and cancer (yes, I’m not kidding, Tamoxifen is a carcinogen). Hopefully I will suffer mild or no side effects at all. We will see. I can’t hide I am anxious about it. I would like to be able to say the treatments are over, but not yet, I have five more years to go with many doctor’s appointments and check-ups in between.
Once you are diagnosed with cancer every doctor’s appointment is like a trip down a rollercoaster that you don’t want to be on: has it come back? Is it cancer again? I talk to people about this but they don’t know what it is like. I have at least one doctor’s appointment per week and I start getting nervous the day before and totally unable to sleep the night before. If you have/had cancer you get it, if you don’t have cancer you don’t get it. It is a fear beyond my control. Every pain in any part of my body, every unusual thing, can be cancer again. It is hard to live with this uncertainty but since the beginning I have decided I am not going to waste years of my life being unhappy about it. Life goes on.
I’ve been having unpleasant leg pain and even after having X-rays done that showed everything is ok I can’t stop thinking that something is wrong. This week I started having a sharp pain on my chest, and again I thought, oh my god it is back. I know it is irrational but I also know it is natural to feel like this. The chest pain was caused by the radiotherapy, some inflammation of a cartilage, nothing else.
I have two recurrent dreams, one where the doctor tells me this has all been a mistake and that I never had cancer and another where I am told they have found a cure. I wake up and I have to face that not only there’s no cure but they don’t even know the cause.
I have a lot of techniques to deal with my emotions and I have to say they have worked very well for me so far. I am also lucky to have so many amazing people around me that make sure I am well. Alone I wouldn’t have made it.
I hope I can find some peace of mind and be able to have a relaxed life despite all this. I think I will.