Weeds

RIMG0942

 

Yesterday I managed about an hour of fairly gentle gardening. Two months ago I would have been out there all day, weeding, pruning and moving half a mountain of mulch. The weeds are spreading and I remind myself that this is my new normal. For the time being, I need to live life in a lower gear.

I’ve been here before. When I was very ill with fibromyalgia for months and I would look out the window in despair. My years of work to build a huge garden from scratch were being consumed by weeds and lack of care. I contemplated selling up and moving.

Gradually, as my health improved, I spent more and more time in the garden. It helped me to recover. It needed me and even on days when my energy was low I’d venture out there, start restoring a tiny corner of it and find myself happily occupied for the whole day.

What surprised me was that the weeds I thought had killed it had actually protected the garden. We’d had one of our hottest summers on record. The climbing weeds had spread across the surface of my delicate plants and saved them from the sun. Slowly the garden came back. I peeled back layers of weed to reveal a thriving garden.

A weed is really just a plant that you don’t want. Something that’s a weed in one garden can be a treasure in another.

Gardeners know that no single plant is actually a weed in all circumstances. Lantana is a decorative plant in the USA but a rampant nuisance here. Even then, it provides our tiny birds with habitat and acts as a fire retardant barrier.

It’s often how you look at things that matters.

When you start chemotherapy they warn you about fatigue. I’ve been told to get around forty minutes of gentle exercise to help combat it, but otherwise to ‘pay attention to your body.’  My energy comes and goes. For the week after chemo I’m very tired and then, slowly, things start to improve. Yoga helps. Even when my energy comes back up again I can suddenly feel very tired. Sometimes I just have to stop.

It would be very easy to find this upsetting.  So many things to do. So many weeds to pull. Instead I’ve decided to think about it like this:

What I’m feeling is not fatigue. I am not ‘tired’, I am ‘healing’.

My body is fighting cancer and that takes a lot of energy. Nothing is more important than that right now. Sleep, rest and relaxation are all part of this battle, not a hinderance to it.

When I feel weary I take it as a sign that I need to stop, to turn may attention inwards. I close my eyes and breathe. Sometimes I find restful things to do. Sometimes I deliberately focus on healing. Both are good for me.

I’m very grateful for the gardening show that introduced me to the Victorian notion of ‘gongoozling’. The term was originally used to describe people that enjoyed watching canal boats but this particular commentator suggested we use the same idea for all of nature. He thought there was great merit in just finding a beautiful spot, sitting and looking. I agree.

I’m lucky enough to have a very comfortable swing chair on our verandah where I can gongoozle. The view is eucalypts and bright blue sky, filled with all of the native birds that make this little remnant of rescued bushland their home. It’s a perfect place to rest and heal. This is what I need to be doing right now. The weeds can wait.

I am also very grateful to the friend that helped me conquer my ‘to do’ list. When I complained that it seemed endless she said, “Well of course. It will always be endless. That’s just life! There’s no point trying to get through it all because you never will. Do what matters. Do what you love. Give the list a little bit of time every day and then remind yourself that it is not the source of your joy.”

The curious thing is that she taught me this years ago. It seems to me that we often know things without actually learning them. We all understand the concept of stopping to smell the roses but we keep falling back into old habits.

Why did I need to get cancer to be able to sit in a chair on the verandah and watch the birds without feeling guilty, or worried about the weeds in the garden? I’m smiling at my own silliness.

I’m looking out my back window as I write this. It’s the first day of spring. My garden is a riot of blossom. I’m going to take some time today to sit out there and remember when all these trees were tiny saplings and I tucked them into the earth with a kiss and a hope for their survival. I’m going to smile at the wisteria buds and the iris, and watch the fairy wrens start their nests. I’m going to enjoy the last of the magnolia blossom, the first of the peach blossom, the colours and the smells and the light.

I’m going to enjoy the weeds.

They’re an important lesson for me.

Advertisements

Fairies

RIMG0347

It’s the official first day of spring tomorrow. My garden doesn’t read calendars. It’s already declared spring. There are fairies everywhere.

My childhood was populated with the same imaginary characters as most. Santa Claus would bring presents for Christmas, the easter bunny would deliver eggs and the tooth fairy would swap lost teeth for a coin.

I always had my doubts about Santa. The kids next door got much better presents than we did even though, to my mind, they were not any less naughty or any more nice than we were. Our easter bunny was also a bit on the slack side, sometimes delivering eggs late or not at all, but you could always rely on fairies.

My mother would encourage us to look for fairies while we were driving in the car. My older brother had no interest but my younger sister was particularly good at spotting them. She would see them in tree tops or flying through the sky. I would search until my eyes hurt. I couldn’t see them, but I trusted they were there.

Once Christmas my sister and I decided to take our decorations out to the wattle tree beside our bedroom window and to decorate it as a tribute to Santa, and to fairies. My older brother took this opportunity to inform us that there was no such thing as Santa. Outraged, I sought my mother’s adjudication. She would, I was sure, correct my brother and point out the error of his ways. Oh the betrayal! Of course it’s funny now but I can still remember my distress. Shocked and starting to cry I asked the question, “I suppose next you’ll tell me there are no fairies either?” Her face was her answer.

I think I was six or seven and I can remember sobbing in my bed for what feels, with so much time and distance, to have been days of grief. Of course it was probably half an hour of being angry and embarrassed and sad and humiliated that my brother and my parents had been playing a trick on me all this time. My father confirmed the horrible truth and that was that.

I continued to play ‘make believe’ and to enjoy fairy tales, but I knew the difference now between reality and fantasy. Nobody would ever trick me like that again. My sister just decided to keep believing in fairies. I wonder why that didn’t occur to me.

When I became a parent I was faced with a dilemma. I honestly think that imagination and creativity are becoming the most important things we can teach our children. In a world where they can look up factual information with a phone, what use is there in memorising lots of information? When super computers can calculate previously impossible equations it’s the people that design those equations that become employable. In a world where you can manufacture things using robotics it’s the designers that are at the top of the pyramid. More than this, I value creativity for it’s own sake. I garden, I paint, I make music and I imagine things.

I also value honesty and truth. I think that good parenting involves explaining things to children and not simply imposing your will on them. If we want to raise honest humans we must be honest with them. If we want them to learn not to be violent we must not be violent towards them. All this seemed self evident. How then should we handle the whole imaginary realm of childhood visitors?

I decided to include the traditional make believe characters into my daughter’s life but to adopt a way of speaking about them that let her know we were fantasising. The same sing-song voice that I used to tell her bedtime stories became the voice I used when I spoke of Santa and fairies and chocolate toting bunnies. We also busted Santa down to the status of glorified postman. In our family, parents bought presents and Santa delivered them. I wanted to be able to say “You can’t have that for Christmas because we can’t afford it.” and “Those kids got more because their parents spent more money.”

Bluebell, the resident tooth fairy, delighted my daughter with personal notes about her oral hygiene and the easter bunny left poo remnants that looked suspiciously like sultanas. We’d put out carrots for reindeer and milk for Santa and all of it was played like any other game. All of the verbal and physical queues were deliberately designed to signal that this was make believe.

In our house, fairies remained the firm favourite. We would look at the light refracting it’s colours through a dew drop in the garden and see fairies. A single crystal could fill a room with them. They were tiny rainbows, too small to see in detail, and they would ride around on dragonflies and butterflies. Light bouncing off any surface was fairies.

I knew my daughter was growing up when I woke her from a deep sleep one night to come and see fairies in the night garden. Grumpy and tired she rolled her eyes at me and said, “Oh Mum. They’re just fire flies!” before stomping back to bed.

As she grew older and started asking us directly if fairies were ‘real’. We would ask her what she thought. We had some wonderful discussions about reality and belief, about truth and fiction. For a long time, she made the decision to keep playing the game. She understood that it was a game but it was fun to keep playing it. She transitioned into accepting that stories about fairies were no more ‘real’ than the stories about talking bears or foxes that we read at bedtime. I hope this process didn’t involve any sense of betrayal on her part.

The fairies have never quite left us.

We will still sit at the breakfast table, looking out into the morning garden, and point out the glittering, coloured dew drops. “Plenty of fairies in the garden today.” They’ve become a bit of a family tradition and we like to jokingly attribute all kinds of good fortune to fairies.

I have parking fairies.

To earn and keep parking fairies you must be on the lookout, when returning to your car, for anyone needing a parking space. You must signal to them when you are about to leave. You must drive courteously in the car park and not cut people off or steal a spot from someone waiting longer than you. Do this enough and you’ll be blessed by parking fairies.

To invoke parking fairies you need only to twinkle your fingers and say “parking fairies” and then, when they provide you with a spot, you must say “Thank you parking fairies.’

A bit of fun and a bit of silliness but ask anyone that drives with me and they’ll tell you that I have remarkable success with my parking fairies, even during the height of Christmas shopping.

Given the success of the parking fairies it seemed only natural that we’d invoke their support for all kinds of things. We have rain fairies, gardening fairies, luck fairies (although they do not hold with gambling in any form so don’t even bother asking about the lotto) and even real estate fairies.

When I was diagnosed with cancer it seemed only natural to invoke cancer fairies. I have had great fun imagining my friends, with their many fine qualities, transformed into tiny cancer warriors with wings. My favourite is a friend that owns a business blasting concrete onto difficult surfaces to retain them. I imagine him encasing my cancer cells in concrete as he flits about on tiny wings. One of my friends is a beautiful singer and I imagine her healing my cells with her glorious voice. My gardening friends are weeding fairies, pulling those cancer cells out of my body and making way for healthy, new cells.

I also imagine my cancer fairies as those tiny, multi-coloured dots of light, flooding into my body and filling me with a kind of healing radiance that floats the cancer out of my body. Some days they are savage warrior fairies and some days they work tirelessly to restore my healthy cells with love and tenderness.

This is the power of the imagination. You can use it to visualise anything at all. I am choosing to use mine in a creative and familiar way to help my body fight cancer. I keep wanting to write that I don’t literally believe in fairies but that’s far too simplistic. Fairies exist for me as a kind of analogy. They represent my ability to create a positive, healing environment for myself. They make me smile. They are my symbol for whatever it is that makes something alive instead of dead. Energy. Light. Life force.

Many people use creative visualisation to fight disease you might want to give it a try. You don’t need to use fairies. You might prefer Star Wars characters, or something like a computer game. Some people use dragons, or angels. You might like to stick with something ‘real’ and imagine T cells and red and white blood cells attacking your cancer. What matters is that it’s something you can relate to and that helps you to feel stronger.

This is not like believing in a supernatural power that is going to save my life. I recognise that the fairies are a product of my imagination. I do not think that a supreme being, if one existed, would be more concerned with my cancer than all of the other human suffering. I wouldn’t want to  worship a god that would intervene in the life of a single individual but ignore crushing poverty, or hideous child abuse, or violent rape in other parts of the world. That just doesn’t make sense to me. If you’ve laughed at Tim Minchin’s song about god fixing the cataracts on Sam’s mum’s eyes then you’ll understand how I feel.

But I think I have a better understanding of religion as a consequence of my cancer. I know from my conversations with some of my church/temple/mosque going friends that there are plenty of atheists and agnostics sitting in places of worship every week. Contrary to the picture painted by some atheist groups, those practicing religion are not mindless sheep, duped into believing a lie. Many of them view the text of their faith as more fable than fact, more fairy story than doctrine. They believe because it makes their lives happier, easier and more pleasant. They believe in spite of evidence to the contrary, and because it makes them part of a supportive, loving community.

Some of these places breed hatred and prejudice and I have no time for them, but many are more moderate places, attempting to bring ancient faiths in line with current, broader ethical standards. I have too many concerns with them, particularly with regard to the things that are taught to children, the status of women and the justification of discrimination to ever join a religion. I can still appreciate the important lesson that they teach many people about belief.

I also struggle with the ‘Santa’ nature of many religions. Be nice and get this. Be naughty and get that. I don’t believe we need a promise of an afterlife to act with kindness and compassion.

When the Dalai Lama toured Australia this year his theme was ‘Beyond Religion’. He spoke of a need to walk away from traditional divisions between faiths, to focus on the critical needs of humanity and the planet. He called on us all to work together in a spirit of love and compassion to heal the earth and ourselves. Some atheist academics talk of a new age of enlightenment, where we throw out the old gods and develop a deeper understanding of true spirituality; one that is grounded in a love and respect for the natural world and fellow human beings rather than an awe of a supernatural god.

These are things worth living to see. What a wonderful world that would be.

If you’ve ever seen the Dalai Lama speak you’ll know that he always opens by saying that he’s just an ordinary person speaking from his heart. He doesn’t hold himself above other living beings. It’s ironic that so many of his ‘followers’ miss this important message. Faith is a personal journey. We need to figure things out for ourselves and not rely upon other people.

Certainly faith and belief have an important role to play in our lives. There is more to life than science. A scientific explanation of light refracting through water doesn’t even begin to describe the experience of seeing a rainbow stretched across a misty sky. That’s where my spirituality resides. In nature. In my sense of connection to all other living things and my sense of awe at the beauty of the natural world. In my wonder at what it is that makes something ‘alive’.

Or to keep it simple, fairies.

The Night Before and The Days After

Yesterday’s post was a timely reminder.

In order to bring my story into the present I’ve had to write about the recent past.

And yet, one of my most important strategies for fighting my cancer is spending a lot of time being present and in the moment.

While it’s been useful and therapeutic to make a record of my journey so far, I’d like to use today’s entry to quickly jump to the present day. There’s been a lot of thinking and believing and figuring things out in that time, but I can write just as easily about these things in the present tense, or simply dip back into the past when I need to.

And it’s the first day of spring soon, so it will be the perfect time to tell you about the fairies.

As for the recent past, the two big hurdles were the night before chemotherapy and the few days after it.

Chemotherapy involves taking your immune system to the edge of a cliff and convincing your cancer to jump first.

The process may include some nasty side effects, including some long term, potentially serious health issues.

Combined with surgery, it is also the best available treatment for triple negative breast cancer. This cancer is aggressive and spreads quickly. You might hear of people that were diagnosed with breast cancer who postponed treatment while they went on holidays or had a baby. There is not just one type of breast cancer. Some of them are slow growing. Mine isn’t.

Because I spent a good part of my life as a detective in the police force I spent a lot of my time in the weeks following my diagnosis investigating my cancer. As an investigator, you learn the difference between ‘evidence’ and ‘opinion’. You also understand that correlation is not causation; the fact that two things happen at the same time does not PROVE that one caused the other. These are important things to keep in mind when you research chemotherapy and come across all of the negative things that have been written about it.

When I was teaching young police to be detectives I used to point out to them that every paedophile I had ever arrested had owned a fridge. This did not, in any way, prove that fridges caused people to become paedophiles. It’s a deliberately ridiculous example but I hope it makes the point. Someone might go on a radical diet or take a ‘miracle’ supplement. Their cancer might go away. The fact that the two things occur at the same time does not, in itself, prove that one caused the other.

There’s a lot of people out there trying to sell you their ‘cure’ for cancer. There’s also a lot of people writing a lot of very negative things about chemotherapy.

I am extremely grateful to the author of this article:

http://www.sciencebasedmedicine.org/chemotherapy-doesnt-work/#respond

He’s tracked down the most commonly cited research used by the anti-chemotherapy camp and debunked it. He’s also provided some excellent commentary on the nuances of medical research and the current state of treatment for cancer. It’s a very long read and rather heavy going but if you’ve been frightened by something you’ve read on the internet you’ll probably find a direct criticism of it here.

For those of you that would prefer a quick summary, here’s what I got out of it:

  • Cancer is not one disease. It is a large group of diseases and they all respond differently to different treatments. Research into chemotherapy for one cancer is not necessarily relevant to any other cancer.
  • People arguing against mainstream medicine and ‘evil big pharma’ will selectively use research that supports their opinion.
  • The same people will often rely upon a summary of that research, or someone else’s interpretation of it, rather than taking the time to read and understand what the research was actually about; as a good example, there’s an often-quoted paper where a large percentage of oncologists say they wouldn’t have chemotherapy but the actual research is old, involved a specific treatment for a specific cancer and was known to not be very successful at the time. This makes that particular piece of research irrelevant to my treatment, or yours.
  • Sometimes the body heals itself of cancer, either through the natural healing process, the influence of the placebo effect or some other as yet unknown mechanism. Some people choose alternative practices based on these results. Some people beat their cancer using alternative medicine and some die.
  • Some people turn to alternatives when mainstream medicine can’t do anything else for them. In the process, some of those people blame mainstream medicine for not being able to cure them. Nobody wants to hear that they are going to die.
  • Medicine is always evolving. We know this because we can look back on what was happening ten, fifteen or fifty years ago and see how things have changed. What we have right now is our current best practice. The fact that it’s not perfect doesn’t mean it’s not good. It will never be perfect (unless we figure out a way for us all to be disease free forever, and I can’t see that happening).
  • Some of what used to be called ‘alternative’ has now become mainstream medicine (for example, acupuncture). Some of what is currently mainstream will be replaced by better treatments in the future. Some of what is currently alternative will become mainstream. Medical science is in a constant state of change. That is not a valid reason for rejecting what is currently the best available treatment for my cancer.
  • While it is possible that, among the many different claims of a ‘cure’ there is something that proves to be useful in the fight against cancer, I’m not prepared to take that risk.
  • I don’t think that I should avoid participating in current best practice in the hope that there will be something better just around the corner.
  • Chemotherapy is not the best treatment for all kinds of cancer. For some types of cancer the risks outweigh the potential benefits.
  • Triple negative breast cancer tends to respond well to chemotherapy, either before or after surgery. The available data strongly supports this form of treatment as my best option.
  • I will support my medical treatment with complimentary medicine (as opposed to alternative medicine) on the basis that there is strong evidence of the benefits of doing so.
  • I allow for the possibility that this treatment may not be successful and I will cross that bridge when I come to it. In the mean time I intend to use my imagination, my reasoning and my belief to support my wonderful medical team and to gratefully accept what is, at this point in time, the best available treatment for my cancer.

For me, it’s been critical to confront all of this and come out the other side of it with a clear head. Some people just don’t read it. That works too.

If you’re someone that’s chosen to go down the alternative path then I respect that choice and wish you the very best for your recovery. I’m going to stay over here with science, the double blind trial and current best practice along with my yoga, meditation, healthy diet (and fairies). But please don’t send me your anti-chemo propaganda. I’ve read it. It undermines me. And please don’t talk to me about ‘evil big pharma’. Right now I’m relying on their drugs to help me beat cancer.

If, like me, you’ve chosen chemotherapy then you’ll probably find the night before treatment is a challenge. I coped by contemplating the time it had already taken me to get here and how keen I was to finally start treatment. I had a warm shower before bed and relaxed with a recorded meditation on my iPod. My husband held me until I fell asleep. When I woke with the jitters at 2.34am I did some deep breathing and gave the cat a cuddle. I drank a glass of warm milk and went back to bed. It’s a hard night and it’s good to have a strategy for it. Do what you can to be as peaceful as possible.

On the day of treatment I decided that it would probably be better to have a good friend with me than my husband. He’s been wonderful and incredibly supportive but when he’s around I’m more worried about how he’s coping than what’s going on with me. I was very lucky to have a dear girl friend visiting from interstate and she stayed with me for the first part of the treatment.

In the information they give you about chemotherapy they suggest having someone come with you. I found it was also good to have some time to myself. I put my headphones on and listened to relaxing music while I meditated on those wonderful cancer drugs fighting my tumours. I welcomed the treatment into my body. I drank water and imagined it helping the drugs get to the cancer. I felt peaceful and powerful.

I complimented and thanked the staff at the hospital. I thought about how lucky I was to live in country with such a high standard of health care. I was grateful, deeply grateful, for the people that put our public health system in place, for my wonderful doctors, for the caring nurses and for all of the scientists that have worked so hard to find better ways to treat cancer.

My husband arrived for the last half hour of treatment so that he could hear any followup instructions and give me a hug. This worked well for me.

Depending on whether you have your treatment on the ward or in one of the many out-patient facilities it’s worth spending some time thinking about how you’d like that to go and what you’d like to do during treatment. Some people like to chat or read or nap. It’s a good idea to take a bottle of water and some snacks. You may not be hungry but, if you are, then something you know you’ll enjoy will often be more appetising than hospital food.

They will give you ice to suck during treatment. This will help you to avoid mouth ulcers. Take some in a cup with you when you go home and keep using it for about half an hour after treatment. My thanks to the beautiful nurse that gave me this advice.

Write down any instructions you’re given about medication, or make sure someone writes it down for you (and check that you understand what’s been written). I managed to get my anti-nausea medication a bit mixed up on the second day because the hospital discharge notes were confusing. Fortunately I’d been given phone numbers to call and it was all fine. Ring people if you need them.

Following my first treatment I developed a huge, ugly bruise on the back of my hand. Following my second treatment I put a wrapped ice pack on my hand when I got home and I only have a small bruise. If you want to do this then please make sure you wrap the ice pack. Too much cold on already sensitive tissue is a bad idea.

I’ve already written a long post about preparing for chemotherapy and the sorts of things that will be useful. If you haven’t already seen it, please treat it as a menu and not a prescription. Always rely upon what your medical team tell you and make choices that are right for you. We are all on our own journey.

So far my reaction to chemotherapy has been fairly good. My first week is the hardest, mostly because I feel so tired and a bit bloated. My appetite is low but I still manage small, healthy meals and I haven’t had any mouth ulcers or major digestive adventures. Best of all, I have not had any nausea.

If this cycle (my second) runs the same pattern as my first then by next week I will be feeling really well, and I will keep feeling that way until my third treatment.

This morning I checked in the mirror and my left breast is now noticeably smaller. My cancer is shrinking. My treatment is working.

Tomorrow I’ll tell you about the fairies. Promise.

Smaller and Softer

I’m jumping forward in time to the present day to share some wonderful news.

I had my second round of chemotherapy this week and an appointment with my oncologist just before that. She confirmed what I suspected. My cancer is smaller and softer.

My two favourite words this week are smaller and softer.

I’d only had one round of FEC and already I can feel the results with my own hand.

My beautiful daughter turns 21 next month. We had an early, mid-week party for her this week because one of her closest friends is heading overseas soon.

As I sat there looking, thinking about the wise, kind and beautiful woman she’s become and enjoying the company of her impressive collection of friends, I knew that no matter what happens with me, and cancer, she’s going to be okay.

FYC! I’ve got to much to live for to let you beat me!

My daughter tells me that all she wants from me for her birthday is for me to be cancer-free. I do love to give her whatever she wants. And if I can’t manage tumour free in two weeks I’ll still be very, very happy with smaller and softer!

I am spending as much of this week as possible being deeply thankful.

I love this man’s work:

http://www.becomingminimalist.com/gratitude-discipline/

Here’s a quote from him and my focus for today:

“Consider for just a moment the benefits of a thankful heart:

  • A thankful heart breeds contentment. It appreciates the many gifts of life itself.
  • A thankful heart promotes optimism. Optimism leads to enthusiasm and determination.
  • A thankful heart brings healthy attentiveness. It finds time to slow down and count blessings.
  • A thankful heart shifts the focus of attention from ourselves to others. It understands that our lives have been enriched by them.
  • A thankful heart is more likely to help others. It humbly realizes it has benefited from others and as a result, is more apt to notice needs.
  • A thankful heart attracts generous people and faithful friends.
  • Studies have found that gratitude results in better physical health and mental awareness.
  • Gratitude heightens enjoyment of the good seasons of life. And provides strength to make it through the difficult ones.”

Chemotherapy Preparation List

I’m putting this list together for anyone out there preparing for chemotherapy. I hope you find it useful. As always, it comes with my caveat that you should always do what’s right for you. You might not like my recommendations and might have your own strategies sorted out already.

Please keep in mind that I’m having chemotherapy prior to surgery. I don’t have work or childcare commitments. Preparing for treatment was a welcome distraction for me as I was walking around with an untreated cancer, six weeks after diagnosis. Everyone’s journey is different. Do what’s best for you.

Feel free to use this list as a menu and to pick and choose those things that you think you’ll find useful. Always put your oncologist’s advice, and the advice of other medical staff, ahead of anything else.

It’s helpful first to understand how chemotherapy works. You’re going to be given drugs that attack fast growing cells. This is because cancer grows quickly and the drugs will, hopefully, melt it away or at least retard its growth. To do this, you also need to put up with an attack on all of the healthy fast growing cells in your body. This is why your hair falls out and you can be prone to mouth ulcers. Your skin can look thin and you might be shocked at how this ages your appearance. Your gut lining will be delicate. All of these parts of your body rely upon fast growing cells.

One of your major issues will be the impact the drugs have on your immune system. Red and white blood cells are fast growing cells and they’re going to take a hit. If you remember the character, Monk, from the TV series and how he was completely paranoid about contamination you’ve got your role model for chemotherapy. Don’t worry about looking obsessive compulsive as you wipe down trolley handles or use hand towels to open toilet doors. Your health is worth it.

Some nausea is also an issue for some people but this aspect of chemotherapy is now much better managed than it was in the past. Don’t expect it. I haven’t been sick at all. I’ll include some tips for handling nausea in this list.

Remember, all of these things are temporary.

You are fighting for your life.

Your aim should be to have as few side effects as possible. Read all of the information they give you and, most importantly, follow the instructions they give you. Your oncologist will probably give you the information sheets available from eviQ, and if not, you can find them here:

https://www.eviq.org.au

Apart from their advice about alcohol (see my previous blog, The Elephant in the Room) these are a great source of information on possible side effects and how to manage them. Please keep in mind that every medication you buy these days comes with a long list of side effects and you’re not obliged to experience them! They need to include everything, even the rare, frightening side effects so that you know what to do if you’re unlucky enough to experience them. Knowledge is power. Don’t let it spook you.

Preventing Infection

Things to buy

  • Hand gel – keep a little one in your purse and use it frequently. Remember it’s not as good as washing your hands but it is a good stop gap.
  • Anti-bacterial wipes – also for your purse. Great for shopping trolleys and other potential sources of contamination.
  • Anti – bacterial liquid soap – if, like me, you’re keen to avoid harsh chemicals there are some great organic ones around. Buy several. Keep one at every sink and ask anyone visiting to leave their shoes at the door and wash their hands. Friends wont mind.
  • Anti-bacterial spray (like Glen 20) – make sure you choose a fragrance that you enjoy. Use it liberally, especially after visitors. Some people prefer eucalyptus oil spray or lavender oil spray.
  • Tea Tree Oil – Don’t get the pure stuff. It’s expensive and very strong. The one you get from the supermarket is fine. It’s great for diluting and washing down surfaces or use it on a cotton bud for cuts and scratches. You might prefer something like Dettol for cuts and disinfectant for your floors and surfaces but I like the low toxicity of tea tree oil.
  • A good quality thermometer – In ear thermometers are expensive but they’re the best. See if you can borrow one from a friend if you can’t afford one. They come with disposable caps for the tip. I don’t replace these every time because I’m the only one using it. I just wipe the tip off with an anti-bacterial wipe. You need to check your temperature at the same time every day. I do mine last thing at night. Make sure you haven’t just had a shower or that you haven’t just taken off a hat or scarf. Both will elevate your temperature. If your temperature goes above 38 degrees you MUST get to the emergency ward of your nearest hospital immediately.
  • Extras for family members – Unfortunately your family are possibly your greatest infection risk, particularly if they’re using public transport or regularly in a crowd of people. Let them read the information about what happens if you get an infection. Ask them to leave shoes at the door and wash their hands as soon as they get home. Isolate yourself from anyone with a sniffle if you can. Don’t let anyone with a cold prepare anything you eat.

Things to avoid

  • Large groups of people, including busy shopping centres, public transport and, sadly for me, theatres. Try to shop on quiet days if you can. If there’s a movie you want to see then the early morning session is often mostly empty. Sit in the back row and don’t be afraid to use some wipes or spray on the seat. Or get a DVD instead. Some people just stay home and that’s certainly an option but I would find that difficult. If you need to work through chemotherapy for financial reasons then do everything you can to avoid infection. People will understand.
  • Anyone with symptoms of a cold or flu. Why do people say “I’m not contagious” when they’re still symptomatic? Don’t believe them. If they have symptoms then they’re contagious.
  • Kissing and shaking hands. For friends, a big hug is better. Cancer hates hugs.

Mouth Care

Ulcers are described by some people as the worst side effect of chemo. If you get them badly it’s difficult to eat and the pain can be excruciating. You don’t need to get mouth ulcers. Here’s how to avoid them. Firstly, make good use of the ice cubes they give you. Keeping your mouth cool helps to limit the impact of the drugs on your mouth lining. Take some with you in a cup when you leave and eat them on the way home.

Things to buy

  • Carb soda – McKenzies distribute one in a plastic container and I’d recommend that. You can keep it in the bathroom next to your toothbrush and it won’t get soggy. You need to put a teaspoon of this into a glass of water and rinse your mouth out after you eat. You also need to use it after you clean your teeth in the morning and at night. It neutralises the acid in your mouth and helps to prevent ulcers.
  • Biotene mouth wash – My doctor recommended this as an alternative to bicarb and I’ve been using both. The mouth wash is great if you think the bicarb will aggravate your nausea. It also tastes a lot better. It doesn’t have alcohol in it so it’s gentle.
  • Soft tooth brushes – the recommendation is to use a child’s brush. I’ve had good results with an Oral B  brush that has rubber bristles along the outside of the regular bristles and a tongue scraper on the back. The rubber seems to protect my gums.
  • Gentle tooth paste – if you usually use something with a strong minty hit then swap it for something gentler. I really like Grants Natural Toothpaste. You can get it at the supermarket (probably on the bottom shelf) and it’s very gentle and effective.
  • Biotene mouth spray – not essential but I find this handy when I eat out and can’t use my bicarb.
  • Organic coconut oil – I’ve had great success with something called ‘oil drawing’ which comes from Indian Ayuvedic medicine. Put about a dessert spoon full of coconut oil in your mouth. Don’t worry if it’s solid because it will melt. Pull it backwards and forwards through your teeth and swish it around your mouth. Keep doing this for about five minutes. Spit it out. Coconut oil is naturally anti-bacterial and helps to soothe and protect your gums. I use this about once a week or whenever I notice that my gums are starting to feel a little ‘felted’ (raw) under my tongue.
  • Nilstat drops – as well as washing out your mouth you need to check it every day for signs of thrush. Hopefully you wont need these drops but if you can afford to have them on hand it will save you a trip out to get them.
  • Kenalog mouth ulcer cream – You’ll need to ask the chemist. It’s not kept on the shelf. Just the best ulcer cream. Use it at the first sign of any soreness. It goes on like a sticky paste so it’s best just before bed.
  • A good quality metal drink bottle – Water is your best friend when it comes to chemotherapy. Staying well hydrated will help those lovely cancer killing drugs to do their work. Water will also help to keep your mouth healthy by diluting any mouth acid. Carry water. Drink often.

Things to avoid

  • Alcohol based mouth washes like Listerine – these are too harsh for you.
  • Old, worn toothbrushes and any toothbrush that doesn’t have ‘soft’ on the label. Cuts to your gums, even tiny ones, can cause infections and ulcers.
  • Sugar and sweet food – You don’t need to give up sweet treats but be aware that sugar causes mouth acid and mouth acid causes ulcers. Be particularly vigilant about your mouth care if you’ve had something sweet and avoid between meal snacks, especially sweet ones.
  • Skipping your mouth care because your can’t be bothered, you’re too busy or you just forgot. Get straight back into it as soon as you can. Cancer hates good mouth care.

Skin Care

Your skin is a permeable membrane. That means it’s really good at absorbing anything you put on it. This is the reason that nicotine patches work so well for people giving up smoking. For this reason, I’m very careful about what I put on my skin. There are a lot of ingredients in commercially available cosmetic products that are known carcinogens. You can spend some very scary hours googling this information if you want to check it out. On the basis that everything I can do to reduce the amount of toxins in my body will help me to kill cancer, I’ve opted for getting organic, non-toxic products where I can. In some cases this isn’t possible or practical and for some people it’s just not affordable. If you can’t replace what you have then try to use less of it.

The important thing to remember about your skin during chemo is that it’s not going to be replacing cells as quickly as it usually does. Expect your skin to look thinner and older and remember this is temporary. You’ll need to avoid the sun because your skin can’t repair itself very well and you could end up with dark pigmentation on your face and hands. You’ll need to avoid using anything harsh on your skin to avoid damaging it. Treat it like baby skin. Pat, don’t rub.

Things to buy

  • Some kind of liquid soap-free wash for the shower. I’ve bought a beautiful body wash from the local health food shop from the Uniquely Natural brand. It’s very gentle, contains no nasties and smells divine. Here’s their web site:  http://uniquelynatural.com.au You might prefer commercial brands like Aveno.
  • Some kind of oil to put on your skin after the shower. It’s best to put this on while you’re still wet and then towel it off. The water helps the oil to emulsify and softens and protects your skin. A lot of people recommend Bio Oil but it’s based on mineral oil (petroleum based) and it’s expensive. I’ve been using organic coconut oil and organic avocado oil, both from the food aisle in the supermarket. I like the feel and the smell of them and my skin has never been softer. Also, they’re completely non-toxic. You might prefer sorbelene or something else creamy. If so, get bulk sorbelene from the chemist. It’s cheaper and most of the commercial brands have added nasties for fragrance and, ironically, customer appeal.
  • Rose hip oil for your face. Get a good organic one if you can. It’s often cheaper online so compare brands and prices if you have the time. This is just the best thing for your skin. You can also use other kinds of oil but monitor closely to make sure you’re not going to break out. Some people love coconut oil on their face and others say it clogs their pores. I find avocado oil is a good substitute.
  • Tea tree oil for any blemishes, cuts or infection. Use a cotton bud for any spots on your face or any tiny scratches you get on your skin. It’s a great natural antiseptic. You might prefer an antiseptic cream.
  • Waterproof bandaids for any cuts or scratches you do get.
  • Vitamin D capsules – because you can’t go in the sun you’ll need to take these to avoid a deficiency. Make sure they have 1000 iu per capsule as this is the recommended dose.
  • You may want to invest in some natural makeup. Mineral powder is gentle and good for hiding blemishes and pigmentation but check the ingredients as some of these include talc and bismuth, both nasty substances. I don’t wear makeup other than for special occasions so I don’t worry too much about my eye shadow or rouge. I don’t wear lipstick unless I’m sure there’s no lead in it. Who wants poisonous lips?
  • When your hair starts for fall around week three then you’ll find your head gets incredibly irritated. It’s like an itchy burn. My daughter checked online forums and found a lot of people recommending a Body Shop product called Vitamin E Face Mist. She bought me some as a gift. Some of the things in the ingredient list are a bit of a worry but it really did make a difference. Coconut oil is also great for your scalp and cures dandruff.
  • Sun block – I have mixed feelings about sun block because the ingredients in a lot of the commercial products are so toxic and the natural alternatives are so expensive (and I’m not sure how well they work). I prefer to cover up with hats and clothing and to avoid the sun. If I must use a sun block I use something fragrance free designed for babies or children because these have less ingredients in them.

Things to avoid

  • Anti-wrinkle face creams. Most of these work by encouraging your skin to shed the top layer and promote cell growth lower down in your skin. Your body can’t do this while you’re having chemo. You need to protect and preserve the skin cells you have, not shed them. Be particularly careful of anything containing salicylic acid. Stick with the rose hip oil.
  • Acne creams. Same as above and a lot of the ingredients are similar.
  • Any exfoliating product or device. You don’t want to be rubbing off your skin cells.
  • Having a facial. I made this mistake. I thought it would be relaxing. Even though I explained to the beautician that I was having chemotherapy the whole treatment was just too much for my skin and she managed to nick the base of my nostril with her fingernail.
  • Soap. It’s too harsh for you right now.
  • Most shampoos and hair conditioners. Use your body wash instead or invest in some natural products that are gentle and don’t contain harsh toxins. I haven’t needed shampoo because I shaved my head but I’ve found that a natural conditioner has been helpful while my hair has been falling out; I use it to massage my head under the shower.

Eye Care

You’ll probably find that your eyes feel really dry, particularly the first few days after treatment. I prefer saline to any of the medicated eye drops. It’s just salt and water, so it’s very gentle and doesn’t contain any toxins. See if you can buy it in small plastic ampules instead of getting a big bottle of it. They come in boxes and should be in the same section in the chemist as all the stuff for contact lenses. They cost a bit more but are much better for avoiding infection. Large bottles can get contaminated with fingers and skin contact.

Nail Care

Bad news. Your nails also rely upon fast growing cells. If you’ve got long nails, gel extensions or acrylic nails it’s best to have them removed. As a cop I was once told by a forensic examiner that nail beds were the dirtiest part of the human body and an ideal breeding ground for bacteria. He couldn’t understand where practice of long, painted nails had come from given that you couldn’t see if your nails were clean and you were carrying around ten little petri dishes at the ends of your fingers. I’ve had short nails ever since.

Things to buy

  • Something to keep your nails and cuticles moisturised. I like Organic Coconut Oil but it stays greasy for a long time so it’s best just before bed. Get some really lovely hand cream and keep it next to you when you watch television. If you’re really lucky you might be able to talk someone into giving you a hand massage.

Things to avoid

  • Nail polish and nail polish remover – both highly toxic and your body needs all the help it can get right now.
  • Any kind of artificial nail other than the temporary, stick on kind. If you really feel naked without your nails then these are your safest bet.

Nausea

I think the best thing you can do about nausea is to pay attention to your expectations. If you believe you’re going to be nauseous you almost certainly will. I don’t mean to suggest that everyone can control all nausea with their beliefs, and I know some people are just ‘vomity’, but your attitude can certainly help to diminish this extremely unpleasant side effect. I’ve certainly felt ‘squeamish’ but think of this differently to ‘nauseated’. The first is a tender gut and the second is the feeling that I’m going to vomit. Language can be a powerful thing.

The two pieces of practical advice I’ve had have been to drink plenty of water during and after chemotherapy and to make sure I take my anti-nausea medication, even if I don’t think I need it. Eating ice cubes during treatment also helps with nausea.

I’ve also found that having a shot of kefir drinking yoghurt first thing in the morning helps. The brand I get is ‘Babushka’ and the flavour is honey. Being a yoghurt it smells like lactic acid so you would think it would make me feel nauseated, but it doesn’t. It has the added advantage of keeping up the probiotics in my gut. I think this helps too.

For the first week after chemo I found that eating smaller meals helped, and I didn’t feel particularly hungry anyway. My second and third weeks my appetite was back to normal. I haven’t needed any of my optional nausea medication. I found that keeping to fairly plain food helped while still paying attention to good nutrition. A small portion of meat or fish with some vegetables is a good, healing meal. Soups are wonderful and one of my favourite comfort foods. Porridge has been my breakfast of choice. I’ll write more about diet in a later blog. I think of all my food as ‘healing’ rather than ‘bland’ or ‘boring’.

As an ex-police officer I’ve had plenty of practice fighting nausea. You’re placed into a lot of situations where you would normally have this reaction but you obviously can’t. I controlled the impulse by taking three or four deep breaths. Suck the breath all the way down into your pelvis and imagine you are pushing the nausea down with it. Hold the breath there for a couple of seconds and then breathe out slowly and imagine that your are releasing the urge to be sick with the breath. After three or four breaths, imagine a pleasant smell. I find lavender, lemon, peppermint and roses are all good. If you can, have a tissue or a hanky handy with some essential oil. A lot of cops use Vicks either on a tissue or in one of those inhaler sticks.

I’ve found it also helps to give my tummy a massage. Big circles with your hand moving anti-clockwise will soothe any tension and help things along.

Chemo may make you very windy. I’ve had that problem. I remind myself not to confuse a burp with the urge to vomit. It’s just a burp.

Digestive Problems

I haven’t had any, apart from being very windy. The fact sheets recommend taking medication if you do have problems. I’ve avoided them using these:

  • Kefir drinking yoghurt – full of probiotics for gut health and also helpful for nausea.
  • Soluble Fibre – I put a spoonful in my coffee every morning and I can’t taste it. Try Benefibre or Metamucil’s Fibresure. They’re both flavourless and dissolve in liquid.
  • Water – Probably the most important thing you can do for your body is to stay well hydrated.
  • Whole foods – Eat foods that are as close to their original condition as possible. I prefer organic when I can get it. No pesticide or herbicide residues. Pump up the vegetable content of your meals and eat a couple of pieces of fruit every day. Bananas and apples are particularly good.
  • Fresh fruit and vegetable juice – my Mum gave me a wonderful juicer and I make up a large bottle of mixed fruit and vegetable juice and keep it in the fridge. I have a shot of this every day. If you can’t make your own juice there’s some reasonable products out there but aim for organic, Australian made and fresh rather than reconstituted juice as a preference. Be careful with highly acidic juices like orange and pineapple or anything too sweet because these will elevate your mouth acid and may give you ulcers. Places like ‘Boost Juice’ are also good, especially if you ask for juice without ice so you maximise the vegetable content.
  • Avoid processed foods and sugar 
  • Don’t drink alcohol or soft drinks, even ‘sugar free’ soft drinks – Both of these are notorious for causing reflux and indigestion.
  • Exercise – Yoga is wonderful for keeping things moving and so is walking. Gentle exercise every day for 30 to 60 minutes will also help you combat fatigue.

Clothing and Bedding

I bought two waterproof mattress covers and waterproof pillow covers for my bed. Target and Spotlight both have good ones that you can put over an electric blanket (if you use one), and that can be machine washed. They have a fine terry towelling surface so you don’t feel like you’re sleeping on plastic. I highly recommend them. I had very heavy night sweats for the first few days after my treatment and it was good to know I wasn’t soaking my bedding. Pretty much everything that comes out of your body in the first week after chemo is highly toxic and you don’t want that soaking into your bed.

I also found it very helpful to sleep with a hand towel on my pillow, and to keep another beside the bed. I can pull it up around my head if I’m feeling cold and if I get the sweats it’s easy to flip my pillow, change the towel and go back to sleep.

When it comes to clothing I’m a comfort over fashion devotee so I already had plenty of interlock cotton clothing in my wardrobe. I love it for both the comfort and the ease of care. No ironing!    You might want to have a look through your wardrobe and think about what you’re going to need during treatment. Here are some suggestions but obviously what you wear is a very personal choice and you need to feel happy as well as comfortable.

  • Alternatives to bras – depending upon the size and site of your cancer you might find it difficult to wear your usual bras. I’ve found that my yoga tops with built in shelf bras have been the most comfortable option. I’ve tried seamless crop tops and exercise bras but because of the location of my cancer the front seam irritates me. Other people love these so it’s worth trying some on. Around the house I just wear a firm interlock cotton singlet. I bought some that were one size down and they’re very comfortable. I also sleep in them.
  • Hoodies – soft, comfortable and easy to launder. The hood is great when your head gets cold. Buy them a couple of sizes up for a comfy fit.
  • Really comfortable track pants – of course!
  • Washable scarves – my favourite fashion accessory. They keep your neck warm which is important when you’re used to having hair. They disguise and distract from whatever is going on with your breasts and they provide you with readily available hand protection for everything from opening toilet doors to using the ATM. I haven’t found them very comfortable for my head because I wear glasses and a scarf pushes my glasses into the back of my ears.
  • Hats, turbans, headwear – you can really have some fun with this one. My favourites have been from shops like Tree of Life and what my daughter calls ‘Hippy Shops’. They’re a great source of interesting head wear. I also found a lovely decorated boater in a second hand shop and some berets and beanies for some different looks. Around the house I’ve made a couple of very comfortable cancer caps by cutting the legs off a size 18 pair of leggins. They cost me $10 at Kmart. Cut them off at the crutch, fold over the cut edge and pull it on, and then just tuck the ankle into the back. Cheap, comfy and if you fiddle around a bit with the folds they actually look pretty good. I haven’t bothered with a wig. I’m okay with my bald head and I think I’d find a wig itchy and uncomfortable, particularly heading into summer. If you want one then ask about a local wig library. One lovely friend that wears wigs for fun sent me all of hers to try on. I looked like a middle aged woman in a wig!
  • Fleece dressing gown with a hood – If you don’t already have one these are great for those times when you feel cold in the middle of the night. Put your gown on, pull the hood up and go back to sleep. Micro fibre is very good at wicking moisture away from your body so this is a good strategy if you wake up freezing from a night sweat. The hood keeps your head warm and also keeps the light out of your eyes if you pull it down over your forehead; much more comfortable than an eye mask.

A few other things you may find useful

  • Disposable latex gloves 
  • Tissues – you’ll go through lots of these
  • Paper towel – great for cleaning up anything you need to dispose of without having to worry about washing out a cleaning rag.
  • Incontinence pads or panties (or sanitary pads) – you may find it a bit harder to hold your bladder when you’re having chemo. I wear them to and from treatment and anywhere that I might not be able to get to a loo quickly. They are also handy during chemo when it sometimes takes nursing staff a little longer than you’d like to help you get to the toilet.
  • Disposable face masks – I wish we had the same tradition here that you see in some Asian countries where people with infectious diseases wear these to protect other people. We don’t. If you think you’re going to have to travel on public transport or get stuck in a crowd somewhere I’d be considering these.
  • Medium sized bucket with a lid – or two or three. Keep one in the car and one beside the bed in case you need to vomit. Throw them out when you finish chemo and never use them for anything else.

I hope you find this list useful and add your comments about anything else you think should be on it. I thought of of everything I bought in preparation for chemotherapy as my ammunition. I was getting ready for battle. I gave the house a really good clean and ‘detox’. That included cleaning out the fridge and the pantry of unhealthy food, sorting my wardrobe and generally moving unnecessary  things out of my home and my life. For me, this was both therapeutic and a great way to eat into the waiting time between seeing my oncologist and finally starting treatment.

I suppose it’s fair to say I had already started treatment. I’d done some serious work on my belief systems, improved my diet, stepped up my yoga and meditation a spent a lot of time learning all about my disease. I took some dietary supplements during the time before I saw my oncologist but her advice was to stop taking everything except vitamin D and fish oil. She explained that she was often frustrated when patients decided to self medicate with supplements that interacted with their chemotherapy.

I’m very good at following instructions. Particularly when it comes to saving my life.

Okay, that was all a bit heavy. I’m heading over to YouTube now to watch ‘Dancing Merengue Dog’. It always makes me laugh. Check it out:

When Life Hands You Lemons

If you doubt the power of your imagination to have a direct influence on your body, try this quick experiment:

Imagine you have a big bowl of fresh lemons. Their tangy aroma fills the air and you admire their waxy, dimpled skin. You get a knife and a cutting board and start cutting the lemons in half. As you cut them you release the juice on to the board and you see the oil from the skin vaporise into the air. You cut the lemons length wise, into wedges. You pick up a wedge of lemon and put it in your mouth, sucking out the tart juice and enjoying that combination of sweet and sour. Your mouth puckers. You reach for another wedge of lemon……

If your imagination is fully functional you should be salivating.

How is that possible? You know you’re not actually eating a wedge of lemon. You’re just reading about it on a screen. But your body has had a measurable, physical reaction triggered only by your imagination. You have not abandoned logic and reason. If I ask you, you will not claim to have actually eaten a lemon. You will know that this is the power of your imagination.

When you stop and think about it, we’re setting off reactions in our body every day using our minds. When we cry or laugh or experience the emotions of characters in a movie our imagination activates our empathy, our ability to place ourselves in someone else’s shoes.

We can use anticipation to feel excited about something we’ve got planned in the future. We can also use it to ruminate about something we dread. Both states are entirely generated by our imagination and both involve a quick trip into the future, but the physical effects are very different.

Using our imagination comes easily. Controlling the way we use it takes practice.

When you’re waiting to start chemotherapy it’s very easy to obsess about possible side effects, worry about the blood test and heart test before hand, and recoil at the idea of bags of highly toxic chemicals going into your arm via a catheter. Just the catheter is enough to send some people into a spin.

In the lead up to chemotherapy I worked on using my imagination to overcome my fears and to prepare to battle cancer. Hooray! Retail therapy!

Some time soon I’ll put up my shopping list for anyone preparing for chemo. For those of you lucky enough to not have cancer the principle is easy to understand. When something potentially frightening is looming it’s possible to use your imagination to flip it over into something positive.

I really wanted chemotherapy. I read as much as I could about how cancer grows and spreads as well as how chemotherapy kills it. This was part of developing my battle strategy and providing my imagination with some useful information for creative visualisations.

I purchased lots of things I knew I would need and imagined that I was collecting an arsenal of weapons and ground support. I hummed Wagner’s Flight of the Valkyries (google it; great battle music), and used all my warrior poses in yoga to prepare my body for the fight of my life. I shaved my head again while thinking “Bring it on! I’m coming to get you, cancer!”

My beautiful friend, Jo, made a flying visit to talk to me about her strategies and choices when she fought her own battle. She reminded me that the most important thing was to be clear and strong in my own choices. She bravely discussed her double mastectomy, her post-surgical issues and her absolute delight at being alive. I am so grateful to have her in my life. If you can make contact with someone like Jo, someone that has already climbed the mountain and killed the beast, they are are wonderful source of inspiration. People do survive this disease. These days you are much more likely to survive it than not. Jo is my constant reminder of this fact.

Next I recruited my army. I used to be the kind of person that was reluctant to ask others for help. Someone pointed out to me how much I like it when that shoe is on the other foot. I love helping other people.

Nobody likes to feel useless, particularly when someone they care about is facing a life threatening illness. I let friends know that the most important thing they could do would be to stay in contact and to keep sending me their messages of love and support. Day by day their love and kindness has been my greatest ammunition against this disease. Cancer doesn’t stand a chance against these people. Facebook has been a wonderful tool for staying in touch.

Of course, some of them offered practical support. Our freezer filled up with individual serves of home cooked massaman curry, we had offers of drivers for treatment, help with the garden and people that gave up the day to come and take me out somewhere beautiful to sit and look at the ocean and feel peaceful. My Mum found beautiful plants and books for me and a wonderful juicer. Several people arrived with thoughtful gifts including home made cookies for guests (we ate them all) and a whimsical coffee set that makes me smile every morning.

If you have cancer it’s important to learn how to ask for help. Your battle will be so much easier with an army behind you.

My right and left flank were my husband and my daughter. Both of them stepped in to take over chores for me, found ways to make my life easier and wrapped me in their unconditional love and support. Although they both wanted to make my recovery the major focus of our family life I’ve asked for balance. Their own lives are important too and shouldn’t stop because of my illness.

My daughter is finishing her first degree and enjoying the first year of living with her boyfriend. My husband has a stressful IT job and enjoys playing in two bands and his volunteering with the local Rural Fire Service. I’m aware that my health is a major source of stress and concern for them. I am grateful to be this side of it. My worst nightmare would be to watch either of them go through it. I want them to know that their help is invaluable to me, and that one of the most important things they can do for me is to take good care of their own health, to keep doing the things that they enjoy and to not let my cancer become a vortex that sucks the life out of our family. They need to keep doing the things they love as well as helping me fight cancer. Balance.

I was admitted to the ward for my first chemotherapy treatment. Usually you would go to their cottage but being on the ward meant I could start earlier, and by now this was my priority. I arrived in a great mood with one of my dearest friends by my side saying, “Is this the place that has the excellent cancer killing drugs?” I entertained the nurse by telling her I didn’t want suppositories because I’d had them before and they were useless; I may as well have put them up my bum! To my amazement she hadn’t heard this very old joke before. I commented to the staff that it must be very satisfying to work in a job where you were literally saving lives. My adrenaline was pumping but I channelled it into humour and excitement over finally starting treatment.

I used deep breathing to relax my arm as the doctor inserted the catheter. Thanks to Jo’s advice, I drank lots of water and ate the crushed ice they gave me. She had recommended this as an important factor in fighting nausea. Another friend that lives near the hospital called in to give me a hug and distract me for a while. After my visitors had left I relaxed and put my iPod on, lay back and listened to yoga music and meditation. I imagined the drugs heading straight for the cancer, seeping into it and melting it. The battle had begun.

We’ve all heard the saying, when life hands you lemons make lemonade. I also think that when life hands you shit you should plant roses.

The Elephant in the Room

During my first visit to the oncologist she commented on the distance we were travelling and asked if it was because of the volume of patients at Gosford Hospital. She’d heard it was getting very crowded there and people were having to wait for treatment.

I told her it was really just about finding a great surgeon and then realising it was best to work with a team of people that knew each other and met regularly to discuss my progress. It was also about getting in as fast as I could, but I hadn’t known Gosford was crowded.

Then I asked her about the reason for the overcrowding. Was this some kind of epidemic? Was Gosford a cancer hot spot? If so, why?

She explained that the whole stretch from the North Shore of Sydney to the Central Coast all had very high rates of breast cancer and the issue for Gosford was about population growth exceeding the capacity of the hospital. Most of Sydney has similar population density but they have numerous hospitals and so the load is spread. Gosford only has one hospital servicing a very large area.

So why was the beast cancer rate so high?

I’m a well educated woman, computer literate and serious about looking after my health. I gave up smoking close to a decade ago because of the cancer risk and  I like to think I’m better informed than a lot of people about the importance of what I put in my body. My oncologist’s rather off hand answer surprised me. What was the reason for the high breast cancer rate?

“Well on the North Shore it’s alcohol. I suppose for the Central Coast some of it’s about obesity as well.”

Sorry. What? Alcohol? I came home and googled “alcohol and breast cancer”.

http://en.wikipedia.org/wiki/Alcohol_and_breast_cancer

Read it and prepare to be shocked. Brief summary; alcohol is a group 1 carcinogen. That means it’s been proven to cause cancer. No doubt about it. Other group 1 carcinogens include cigarettes and asbestos. And it gets worse. Just four standard drinks a day can DOUBLE your chances of breast cancer. A bottle of wine contains seven standard drinks (yes, I know that when you share one you’d think it was more like four but you’re not pouring a ‘standard’ drink). This means that if you and your partner like to share a bottle of wine over dinner each night you’re close enough to doubling your risk of breast cancer.

I’m always careful about taking statistics too seriously. A lot of what gets hyped in the media is, upon further inspection, just scare mongering. For example, if your chances of getting something are one in one thousand and something ‘doubles your risk’ then you’re still only looking at two chances in a thousand, but the headline makes it sound shocking.

The trouble is that your chances of getting breast cancer are much higher. Here’s the statistics:

http://canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/breast-cancer-statistics

“In 2009 the risk of getting breast cancer in women under 85 was one in eight”

I was shocked. How was it possible that I had, along with most of my friends, had been merrily consuming a group 1 carcinogen with no appreciation of the risks?

Australia has famously had a very successful anti-smoking campaign. We have television ads, help lines, easy access to quit smoking products, the strictest labelling laws on the planet, restrictions on smoking in restaurants, theatres, work places and (ironically) bars. These strategies have had a huge impact on the number of smokers and attitudes towards smoking. It’s possible to go to a party or a restaurant and not see anyone leave to have a cigarette. Most of the remaining smokers are fighting to quit. It’s very rare to meet a smoker prepared to defend their addiction.

But pick up a bottle of wine, or any other type of alcohol, and the most you’ll see is a caution to consume it sensibly. Or in moderation. Where’s the warning that it could kill you? It’s not just a risk for breast cancer. It’s a risk for a whole lot of other cancers as well. Check this out:

http://en.wikipedia.org/wiki/Alcohol_and_cancer

Why is it that the manufacturers of cigarettes are vilified as ruthlessly profiting from the misery of others but wine makers are seen as well respected members of the agricultural industry and promoters of all things delightfully decadent? Why is there no campaign to inform people about the risks of alcohol and no policies to limit consumption? It’s as dangerous as smoking. Why are both substances treated so differently?

My oncologist gave me some information sheets about the possible effects of chemo and how to manage them. They’re from a place called eviQ that provides information about cancer treatments online. Under the FAQ section in response to the question “Can I still drink alcohol?” they have this to say:

“It is fine to drink 1-2 standard drinks a day with most chemotherapy drugs. In some cases alcohol can interfere with the way some chemotherapy drugs work. Your doctors and nurses giving the treatment will be able to give you specific advice about whether drinking alcohol is safe with your chemotherapy drugs.” What? I wonder if their sheets for lung cancer patients tell them it’s fine to have a few cigarettes.

When I talk to friends about the risks of alcohol it’s clear that most of them don’t want to hear it. I recognise this response. It’s the same one I used to have to giving up smoking.  “It helps me unwind.” “I don’t think I’d enjoy life without it.” “I don’t care about the risks. I might get hit by a bus tomorrow.”

Fair enough.

Life involves risks. You might get hit by a bus. But the chances are tiny. The chances of alcohol giving you cancer, on the other hand, are well known and well documented. But it’s your choice.

The worst thing about learning this information from my perspective is that I don’t have any difficulty not drinking. I lived for five years with an alcoholic and gave it up easily (there’s a whole other blog about co-dependence right there.). I’ve done Dry July a couple of times and I’m always surprised at how many people comment that they couldn’t give up alcohol for a month. It’s not an issue for me.

My grandmother was in the Salvation Army. They don’t drink. I asked her once if I should be worried about my drinking. She told me to give up for one month every year. If I couldn’t then I definitely had a problem and should stop drinking. If I could then I didn’t need it and should stop drinking. I wish I’d taken her advice.

I don’t know if my drinking caused my cancer but it can’t have helped. I’m not going to turn into the resident wet blanket at every social event but I do plan on letting all my friends know, just once, about the risks. Some people have the same reaction as me. They are thankful. They change their behaviour.

If one less person gets cancer because I shared this information it will be worth it.

Alcohol is the elephant in the cancer ward. It’s killing people.

Here ends my rant.