Did you know I wrote a book?

WordPress has just sent me a message telling me that this site is getting a lot of traffic right how. Hello and welcome! Please feel free to leave comments and to share anything you found useful with others. The whole purpose for keeping this blog was to help other women (or men) going through that long, dark tunnel that cancer offers us.

If you’re new here you may not know that I wrote a book about dealing with the fear of recurrence that is a common and perfectly normal consequence of recovering from cancer. I wrote it after a dear friend, who I met because of this blog, suggested it. Ricki was an amazing women who participated in as many experimental medical treatments as possible before her death, “Because I know I’m dying, Meg, but at least I can help other women before I go…”

When she got the news that there was nothing more doctors could do for her I made a trip down to Sydney to visit her. When I arrived, she was sitting up in bed, smiling and joking. I was gobsmacked! I told Ricki that I was all prepared for a weepy session and she said, “What your book taught me, Meg, is that every single day is precious. I’m alive today. I can still cherish my family for today, still be grateful for my life, still recognise how fortunate I have been compared to so many people in the world. You also taught me that I shouldn’t waste and of the precious time I have feeling sorry for my self!”

I wish I could say that the book will have this kind of impact on everyone that reads it (and what an amazing gift to the world that would be!) but I am certain that Ricki was just an exceptionally positive and giving person, and I am grateful for any part my book played in making the end of her life a little easier. Death is hard, even for joyful people and those that love them.

Ricki started following my blog soon after I started writing it, and her thoughtful and encouraging comments kept me writing when I might have given up. In a private exchange I once told her that I was feeling a bit swamped by all of the women that were contacting me to ask about dealing with that slow and creeping fear that the cancer would return. I had what I thought was good advice, but it was becoming increasingly demanding to repeat myself. “You should write a book!” she replied. So I did. Here’s the link:

Free From Fear: Living Well After Cancer

When I was choosing a title, I wondered how people like Ricki would feel. She knew by the time I had finished the book that her cancer was metastatic and considered incurable. “I like it. You’re living well after your cancer diagnosis and I’m living well after my cancer diagnosis. I don’t think you’ve excluded anyone.”

All profits I make from the book go back into charities that fund cancer research or support people with cancer.

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The Post Chemo Brain

I’ve had some interesting insights lately into what has happened to my brain since treatment. I was asked by Dan Palmer from ‘Making Permaculture Stronger’ to talk about how I apply permaculture design principles. He’s a joy to speak with, and asks the kinds of questions that stretch my mind. During the interview I talked about soft systems methodology as I understood it and Dan commented that my understanding differed from his. Following the interview I googled it. Sure enough, the articles and diagrams I found to explain soft systems bore no resemblance whatsoever to my understanding of it! What was going on? How could I be so certain about this knowledge and yet so wrong?

I think it’s something to do with chemotherapy. Chemotherapy is like a wildfire that consumes a huge chunk of cognitive ability and what grows after it continues to surprise me. My brain was not commonplace to start with (and I suspect that if I had been born into this generation I may have been diagnosed as mildly autistic) so this new version seems to be some kind of unusual evolution from that.

I feel as if the chemotherapy burnt away all the detail and allowed me to see the underlying structure in things. It also seems to have fused different categories of knowledge together in unusual ways. Following treatment I had difficulty remembering my phone number and I intentionally pursued ways to rebuild my brain. That included rereading and relearning things I had known well before treatment. I enrolled in permaculture courses because I loved the subject and once understood it well, but found that post-treatment I struggled to articulate even the basic principles. Sure enough, the neural pathways started to rebuild, sometimes connecting with a flash of insight.

I pause here to apologise to the very tolerant teachers on the Milkwood permaculture courses that tolerated by often excited interruptions to their excellent training. I must have been one of the most disruptive students ever, and yet you remained empathetic. Thank you. I am deeply grateful.

It seems that like a forest after a fire I am creating something new from the devastation. It’s hard to say. I can’t return to thinking the way I used to think so I have no honest comparison. I do know that as I recovered from treatment I intentionally designed my own pathways back to health. I’m starting to suspect that I modelled the rebuild on permaculture. It seems that I may have bundled some of my previous knowledge together and developed some new and unusual connections. I feel like this evolution of my brain is a new and improved version. I allow for the possibility that my thinking is actually very ordinary, but just novel to me because my cognitive function was so poor for a couple of years. I may just be a three year old discovering the joy of twirling around in circles.

In any case, it’s great fun to think and explore and design and create. I am perhaps the bird that broke its wings only to rediscover the joy of flight. I have a new appreciation that can only come from spending time unable to fly. I dip and swerve and soar for the sheer joy of it, and delight in the company of anyone that wants to play along side me. I feel like an eagle. I may be just a delusional sparrow, but this does not in any way detract from the joy of flight.

PS: Thank you to everyone that has remained interested in this blog and my apologies for not writing more frequently. I’ve been busy. If you enjoy my writing and want to read about something other than cancer I have another site here:
Smarter than crows

I’ll be copying this post to there, but everything else on that site is different to this one. It’s kind of a parking space for my new brain.

My Daughter’s Wedding

It’s taken me just over a month to write this post.

I keep crying.

Happy tears. Sorry to have scared you. I’m fine.

On the 2nd of June 2018 my beautiful daughter married her boyfriend of nine years in a pine forest, in winter, surrounded by friends and family.

I was there.

I spent the year before the wedding teaching myself floristry, partly to save them the cost of flowers but mostly as an act of love. I wanted to do something special for them both on their big day. I’ve always been a gardener. Flowers seemed a good fit. It was a way to squeeze every bit of love into the day. I made bouquets and my husband posed with them so she could get an idea of scale. He became a minor facebook sensation. It was great fun. On the day she had a huge bouquet that was exactly what she wanted, complete with orchids from my garden and silver wattle from her primary school.

I also made 100 metres of environmentally friendly bunting from hessian tape and recycled bed sheets. It only occurred to me after we had made it that they were almost like prayer flags. My daughter and her partner lived with us before they had a place of their own and sheets were a communal thing, so all of us have dreamed and loved and planned our futures on those sheets. There’s a fair chance that a decent forensic lab might even be able to detect the residue of my chemotherapy. I would have woken up between those sheets more than once, certain I would never see my daughter’s wedding. And here were all those nightmares cut into joyful triangles and hung from the ceiling.

It was an emotional day. The groom teared up when the bride appeared at the edge of the forest with both her dads, one by birth and the other by marriage, red eyed and shaking with the emotion of it all. I could hardly see anyone for the tears. My daughter’s childhood friend and head bridesmaid spent most of the service looking at the treetops and trying not to sob. The vows were punctuated with deep breaths and strategic tissues. I’ve never seen so much happiness.

These two have been dating since high school. They’ve never wavered in their love for each other and they’ve weathered the storms that come with enduring my breast cancer and, at one point, receiving the news that it might be necessary for them to bring their wedding forward so that I could at least attend it. Rumours of my death proved to be false 😀

There was a kind of silent agreement that cancer would not be invited to the wedding. My daughter asked me to do a reading during the service rather than make a speech or walk her down the aisle. She told me that it was necessary to find a way to contain the almost overwhelming memory of the possibility that I might not have been there at all. Her father knew not to mention the cancer in his speech, and so did the best man. Then my daughter rose to thank the long list of people that have loved and supported them. There was something about ‘my Mum….who almost wasn’t here….’ and we both lost it. I cried and waved her on and she took a deep breath and change the subject.

It can be awkward when you have two dads, knowing which one you should dance with first. She danced with me instead. The song was something about female power. I don’t remember. I danced and danced. At one point the DJ announced there were only three songs left to play and I realised it was just me and all the young people on the dance floor. I was too happy to sit down.

Tomorrow I have an appointment with my surgeon. It’s my last one. It’s been five years since my diagnosis next Wednesday. I am well.

And deeply, deeply grateful.

 

Why Mammograms?

A post by BreastScreen popped up in my Facebook feed today. For those from overseas, this Australian government initiative provides free mammograms to women, with a focus on those between 50 and 74 years of age.

The age restrictions aren’t arbitrary. They are based on evidence that this is the window where a mammogram is most likely to detect cancer. All Australian women within this group are offered a free test every two years.

Women between 40 and 50 are advised to talk to their doctor about whether or not a mammogram is advisable. They can attend BreastScreen for a free test if there’s a reason to do so, such as a family history of breast cancer, or a medical history that leads a doctor to conclude that a patient is at higher risk. This history might not be related to previous cancer or benign tumours. It could be that someone has ‘lifestyle factors’ like smoking, obesity or excessive alcohol consumption that put them at higher risk.

Mammograms are not routinely offered to women under 40 because the test is likely to be less effective. Breast density declines with age and it can be difficult to detect cancer using a mammogram in younger women. For women 75 and over, routine testing is no longer considered necessary. Generally, if you’re going to get breast cancer you will have developed it before this age. That’s not to say that women in this age bracket shouldn’t continue to practice self-examination and to request a test via their doctor if they suspect anything is wrong. It’s just that the incidence of cancer in this age group doesn’t justify the cost, inconvenience and small risk associated with testing.

Yes. Small risk.

It’s not uncommon to see any post about mammograms followed by at least a few comments recommending against them. The arguments usually state that the radiation is toxic and that testing may actually cause cancer. There are also concerns about ‘false positives’ which result in women receiving unnecessary and potentially life-threatening treatment, ‘false negatives’ where a woman with cancer is told she doesn’t have it, and a reliance upon research that is cited as evidence that free mammograms have no benefit. Here’s a typical article:

Why you shouldn’t have mammograms

This is another example of a very complex issue being dumbed down in pursuit of internet popularity. The truth is a lot more subtle. There’s the usual difficulty with any piece of research related to breast cancer; we’ve seen huge changes in treatment and technology in the last two decades. We now have lower radiation used in diagnostic equipment, better treatment following diagnosis and ongoing research that will continue to impact upon detection and treatment.

One of the greatest discoveries since the introduction of free mammograms and the subsequent analysis of data was that some early cancers seem to heal themselves. This is why the early detection of DCIS (ductal carcinoma in situ) may have previously resulted in treating a condition that would have gone away all on its own. But here’s the catch. Not ALL DCIS goes away on its own! If you were previously diagnosed and treated for DCIS then it could be that any treatment you had was entirely unnecessary. It could also be that this early treatment saved your life and your breast.

Research is now focused on figuring out which types of DCIS are likely to resolve all on their own. It’s hoped that in the future, doctors will be able to determine which cases need treatment and which should be given a bit more time to see if they resolve on their own. In the mean time, I would still be recommending screening on the basis that I’m not prepared to accept a dice roll when it comes to cancer.

Of course I need to declare a bias. BreastScreen detected four tumours in my left breast the very first time I had a free mammogram. This was not DCIS. This was full blown triple negative breast cancer. My tumours were doubling every three weeks and I was fortunate enough to have received my BreastScreen invitation at a Goldilocks moment; my tumours were just large enough to be detected but had not yet metastasised.

You should know that at the time, I was, to all outward appearances, physically fit. I was probably about 15 kilos over my ideal weight, but hardly obese. I was a non-smoker who enjoyed sharing a bottle of wine with my husband over dinner (before I discovered it was a category one carcinogen, just like cigarettes) and I regularly practiced self-examination after every menstrual cycle. I had no palpable lumps in my breasts but the mammogram found four tumours.

To say that this test saved my life is not an exaggeration. Without it, I would have had no indication that anything was wrong until the impact of the cancer spreading throughout my body became apparent. Triple negative is rarer and more aggressive than other types of breast cancer, with a lower survival rate.

You see this is my bottom line about research and data. None of it counts for anything much if yours is the life that’s saved. Here’s a link to one of the pieces of research that’s often cited when demonising breast screening:

Possible net harms of breast cancer screening

It’s always useful to go to the source when the internet scares you. The most significant thing about this research in my opinion is that they do not dispute the fact that mammograms save lives. Their argument is that screening also results in a reduction of quality of life in those women incorrectly diagnosed and treated because of the ‘months of psychological distress’ they experience. They also argue a reduction in quality of life for those whose cancer goes undetected.

I’ll deal with the last group first. If a mammogram did not detect your cancer then it is usually the case that you had no other evidence of cancer. Lumps, swelling, pain or any other abnormality of the breast would warrant further testing, including ultrasound and biopsy. The fact that screening does not have a 100% detection rate needs to be balanced agains the fact that mammograms save lives.

The over treatment of some women is a serious issue and there can be no doubt that waiting several weeks (rarely months) while you worry about a suspicious lump is definitely distressing. There can be no question that the research into reducing this type of event will greatly improve this situation. In the mean time I’d like you to consider things from a personal perspective. These are the possible outcomes from your routine mammogram:

  1. It detects a cancer that you didn’t know you had and this detection saves your life.
  2. It detects a cancer that you didn’t know you had and that cancer ultimately kills you. Treatment may or may not give you a few more precious months or years with those you love. Certainly early detection will improve your chances.
  3. It detects a cancer that you didn’t know you had and you die as a consequence of your treatment (neutropenia, staph infection, heart failure during surgery etc) but left untreated the cancer was killing you in any case.
  4. It detects a cancer or a pre-cancerous condition that you didn’t know you had that would have resolved itself without medical intervention and this results in you being anxious. It may also result in you having a lumpectomy that reveals a benign lump. This will be frightening but will ultimately reassure you that you don’t have cancer (and probably also inspires you to reassess your life and the choices you make).
  5. No cancer is detected, even though you have cancer. In time your cancer will either resolve itself or become apparent. If you have any symptoms you should request other forms of testing and not rely upon a negative mammogram.
  6. No cancer is detected because you do not have cancer.

Here’s the thing. There is absolutely no way of knowing which of these categories you fall into without actually having the mammogram. Take a good look at point number one again and ask yourself, “Am I prepared to take that risk?”

Before you roll that particular dice it would be a good idea to know your odds. I mean, if the risk of getting breast cancer was one in a million you’d be justified in wondering if the discomfort and low radiation dose associated with a mammogram was worth it. But if you’re an Australian woman your odds of developing breast cancer are one in eight.

One in eight.

The risk is similar throughout the developed world. Here’s a link with the current statistics:

Breast cancer statistics

Add to that the clear evidence that early detection improves survival, and helps to minimise the risks and side effects associated with treatment.

Thanks to early detection I had no spread of cancer to my lymph nodes. Once triple negative escapes to the lymphatic system it spreads, typically to bone, lungs or brain. Give me early detection.

Early detection might also mean that you can have a lump excised and keep your breast, rather than having the breast removed. It could mean that you avoid the risks, discomfort and possible side effects of chemotherapy or radiation. It could mean faster and fuller recovery from cancer.

So the next time someone tries to tell you that a mammogram will kill you, you might like to respond with this:

How do you know that?

It’s my favourite question for people quoting an internet article. In fact the research clearly shows that mammograms save lives. You might also like to send them this excellent article about the mammogram controversy:

Mammograms save lives

I know. It would be easier to just smile and nod and walk away, but these people are dangerous. I have met women that refuse to have free testing because of the scare campaigns. I just hope they aren’t one of the one in eight that will develop breast cancer, because, by the time they do it might be too late to save them.

For Terry

Regular readers will remember that I recently lost my dear friend, Ricki, and wrote about it on this site. I was shocked and honoured when her priest and family referenced my words at her funeral. It was a sad day, but a wonderful celebration of a life well lived. Her husband, Terry, is still struggling without her and after yesterday’s post he wrote to tell me he’s been having a tough time recently. I was going to respond directly but it ended up being a long piece about grief that I thought might be helpful for others going through the same thing. So I’m posting it here:

Dear Terry,
I’d say you were about due for a rough week. I remember once reading a book about grief that described it as a series of stages. Having been through it, I’d say it’s a lot more like a swamp. Sure, there’s denial and anger and bargaining and sorrow and acceptance but they don’t unpack into a row of neat little boxes. Instead we lurch from one relatively stable island to the next, sometimes falling back into the swamp and spending the day waist deep in mud, or feeling like we’re going to drown in it. This is normal.

Moving into sadness might feel like the hardest thing you will ever do but my experience is that tears are the river through the swamp and acknowledging your sadness is the fastest way through it. I know that grief can feel like it is all consuming but somehow we survive it. Even on those days when the swamp pulls us under, we somehow drag ourselves out and keep going. This is a heroes journey and you are up for it.

Opening up to the grief and getting in touch with the present feels like the exact opposite of what most of us want to do. It’s why people use distraction, or avoidance, or numbing themselves with alcohol or drugs. All of these are akin to sitting on an island in the middle of the swamp and refusing to move. There might be times when this is part of your recovery but as a long term strategy it’s self defeating.

Writing about how you are feeling will help. It’s a way of letting your mind know that you are acknowledging all of the emotions that are bubbling up for you. I’d suggest starting a journal and just spending a bit of time each night recording how you felt that day, without judgement. It might not feel like it now, but at some point you will notice that you had a whole day on dry land. Between then and now you will have days of misery. It is what it is. This too shall pass.

The exercises in my book will help you, but think of them as a kind of walking stick to assist you across the swamp rather than a way to airlift out. There are many paths through the swamp and some are more difficult than others, but sooner or later you must cross it. Knowing that there is definitely dry land ahead of you somewhere will help. The swamp is not endless. Just horribly difficult. Get in touch with your own values and what really matters to you. Who do you want to be in this situation? What do you want to stand for?

It’s a cruel time to be made redundant. As if you didn’t have enough to grieve. I can understand why you’re not excited about buying a new car. In the current circumstances it will feel like a chore to even pick it up. This is normal.

When you feel ready, it’s a good idea to find a few group activities that you enjoy. I know the company of strangers possibly feels like the last thing you want right now but that will change. Company is the best antidote to loneliness and all of us need connection to others. Baby steps. Some people find joining a group that specifically deals with grief is helpful and others find it too overwhelming.

Know that your home will transition over time. Right now it is a reminder of Ricki’s absence and a source of pain but as you progress through your grief it will start to become a reminder of all the great times you shared. It’s common to advise people not to sell their home before at least one year has passed. I agree.

I also think getting a referral to a good psychologist is always worth doing when a major life crisis hits. Just having someone to talk to about what you are going through is hugely beneficial. Your GP can refer you for up to 10 visits on Medicare and ten more after that if you still need them (and you will probably still need them).

As a man of faith you may also find support through your church. I know other Christians often say it was their faith that got them through times like this. I do not believe in any god, but I believe in the power of faith and the significant part it plays in the lives of those that have it.

I think when you are feeling most lonely it can help to connect to the common experience of fellow human beings. Everyone alive has either lost a person they loved, or they will at some point in the future. You are surrounded by people that have already been through the swamp and others that are yet to get their feet wet, but who will benefit from your experience. We all die.

You are already a living example of how one human can greatly love another and this has been a significant influence on so many people, including your children. Now you are becoming a living example of how someone survives such a great loss. This is no small thing. If we cannot see examples of how to recover from losing our beloved then why would we ever risk ourselves to that kind of love? If the pain was too much to bear then surely we would hold ourselves apart from love.

I know that you will show all of us that even though the grief is sometimes overwhelming, love makes all grief worth it. The only way to avoid grief is to avoid love, and who would not want the kind of marriage that you and Ricki enjoyed.

My best wishes on your journey across the swamp and know that I am here, out on the edge, to shout out encouragement when the going gets tough. I wish I could wade into the swamp and pull you out but unfortunately grief doesn’t work that way. Each of us must find our own way.

You’ve got this.

Love

Meg
XXX

 

Adventures with Acupuncture and Alcohol

Some time around November my peripheral neuropathy returned with a vengeance. For the uninitiated, this condition is a common side effect of chemotherapy. The variety of chemotherapy they gave me is designed to knocking out all the cells that reproduce quickly. That includes the cells that form hair, fingernails, the lining on your mouth and the surface of your tongue. This is why we go bald and develop ‘metal mouth’, where everything tastes strange. Unfortunately many people also get a kind of dieback in the nerve endings at the extremities of the body.

For me, peripheral neuropathy turned up just before my last chemotherapy session. My final dose was reduced but I still wound up with uncomfortable pain in my hands and feet. It gets worse than this. Some people are crippled by peripheral neuropathy and others find doing even simple tasks with their hands acutely painful.

Nerve pain is unlike any other kind of pain. It can be difficult to describe. Most commonly it’s compared to ‘pins and needles’, or that aching numbness you get if your circulation to your hands is compromised; if you ever tried sitting on your hand as a kid you’ll remember the exquisite numbness as the blood supply returned. Sometimes my hands feel like I’ve just removed them from iced water, and other times they feel hot and itchy. It all went away when they gave me gabapentin following the bilateral mastectomy. It’s a great drug for nerve pain but in my case it also affected my brain in unexpected and unpleasant ways. Gabapentin is also used to treat epilepsy so this was hardly surprising. In my case, I started coldly and calmly contemplating suicide. I wasn’t depressed or unhappy. Taking my own life just started to seem like a logical option. It was a scary time.

Denied the drugs that usually help with the condition I’ve tried various supplements, including fish oil, evening primrose oil, ginkgo and vitamin D. I also practiced daily yoga and stayed away from inflammatory foods, including gluten.  At some point my hands and feet returned to normal. The pain was gone. I should have kept a journal. Perhaps I’d know what to do now that the pain has suddenly, inexplicably returned.

The trouble with nerves is that they grow very slowly. My radiation oncologist told me that things wouldn’t be done for about eight years. This means that establishing a causal link between anything I did or took is problematic. Since November I’ve been trying to diagnose what caused the relapse with no luck. I’ve figured out that avoiding sudden changes in temperature helps, so maybe summer’s air conditioning was a trigger. Who knows. Of course I hit the internet trying to find clues. Acupuncture kept turning up as a possible treatment.

I’ve had acupuncture only once before. When I had fibromyalgia I saw a local doctor who put needles into my pressure points. These are acutely painful spots on your body that occur in a pattern that is typical of this condition. Having needles stuck in them was enough to bring me to tears. I had two sessions before deciding that even if it was helping I would rather have the constant dull ache of fibromyalgia than the intense torture of acupuncture.

Then I had a series of people randomly mention a local acupuncture practitioner, not knowing I was considering treatment. My friend, Maryanne, would say the universe was speaking to me. In any case, I decided to make an appointment.

Tim, the acupuncturist, is a warm, friendly person and easy to like. He asked me a series of questions about my history and symptoms before taking my pulse. Somehow, this pulse taking allowed him to diagnose that my energy levels were low and that I needed to express grief. The skeptic in me observed that these would be fair assumptions to make about anyone that was coming out the other side of a bilateral mastectomy and treatment for cancer. He explained that according to Chinese medical tradition, energy is stored in the kidneys and mine are running on empty. This means there is not enough energy to reach my hands and feet. He also detects ‘lung blockage’ which is how he has diagnosed grief.

I have family members that would roll their eyes and scoff, but if there is one thing I have learnt throughout my treatment it is this: We have no idea what we don’t know. I had the kind of prognosis that left doctors convinced I would no longer be alive, and yet here I am. I have no doubt that my massage therapist has played a large part in my survival and she ‘talks to spirit’ and allows my body to tell her what it needs. Who am I to argue?

So I climb onto the table and let a stranger stick pins in me.

The first few are surprisingly painless. No really. Completely painless. I can feel a sensation that is similar to someone resting the head of a pin against my skin, but no more than that. The next few are more noticeable but still not painful. Tim asks how they feel. The only word I can find is ‘weird’. Tim tells me that’s the word most people use. It’s a very odd sensation. I get a sudden pressure in my head which Tim relieves with a bit of massage. Once there are a few pins in my feet and legs and a few more in my hands, Tim leaves me for ten minutes or so to allow the acupuncture to do whatever it does. I am very conscious of holding myself still because the idea of bending or breaking a needle is horrifying. I breathe and practice a bit of light meditation. It helps.

Tim returns, removes the pins and processes my health fund rebate as I pay. Very handy. I make an appointment to see him the following week.

In the week that follows I’m conscious of the risk of observation bias. It’s possible that any shift in the peripheral neuropathy will be attributed to the acupuncture but with a sample size of one and no control, how can I be sure. My hands don’t feel as tingly, but they still ache. I find I have more energy and acknowledge that this could be coincidental. I watch a movie that a friend recommends called ‘I miss you already’, which is all about a woman dying of triple negative breast cancer (okay, maybe the universe IS talking to me) and I have a really good cry. I realise that when you go through treatment it’s enough to just get through each day. I am also aware that my policing background taught me the unhealthy habit of parking my emotions rather than dealing with them in real time. The movie helps me to grieve. I feel much better the following day and every day since.

My second visit is much the same as my first. Tim takes my pulse again and seems disappointed that my kidney tanks remain empty. I tell him that thanks to my improved energy I managed to spend a whole day out in the garden, hauling and placing mulch. He politely tells me about patients he has treated with chronic fatigue that undermine their own treatment by rushing to do all the things they haven’t been able to manage. I get the message. Rest, rest and more rest until I see him next time.

There are more pins on the second visit, including two at my neck that are painful. Tim apologises and explains that instead of refilling my kidneys, all my energy is rushing to my head and this is why I have experienced pressure during both treatments. I notice that the pressure in my head has subsided since the pins went into my neck. Perhaps it’s like that old joke about stomping on someone’s toe so they don’t notice their headache.

Following the second session I have a massive sugar craving and I feel extremely weary. I eat chocolate and go to bed. I’ve booked another session. I’ll let you know how it goes.

I’m not sure how much of this treatment is about the needles and how much of it is about the talking. I’ve been encouraged to grieve and rest and both of those are helping. I’m also paying close attention to my symptoms to see if I can identify any contributing factors. Alcohol is the only clear villain. I knew that.

I’ve written before about my ongoing relationship with alcohol. It reminds me of low level domestic violence. I enjoy the first drink, and the second. If it was possible to just have those two drinks once or twice a week then I would be complying with the new standards for anyone that has had breast cancer. The trouble is that alcohol lowers impulse control so any time I have the first two I usually find myself continuing to drink throughout the evening.

The honest recommendation is that we not drink at all, because alcohol is a known carcinogen, and if we do drink to limit it to half a bottle of wine a week (or the equivalent). This is a compromise. My oncologist tells me there was a lot of debate about just issuing a statement against all alcohol but they are realistic and believe that setting some kind of limit means we’ll all think more carefully about our drinking. This is a bit like telling a smoker to cut down.

I am very familiar with this dance. I tell myself that I will limit my drinking to X amount or to X days or X circumstances only to break my own commitment, feel remorse and recommit. I used to do exactly the same thing with cigarettes. The time is coming when I will give up alcohol (even typing that was hard and I wanted to type ‘consider giving up alcohol’ but caught myself in my own delusion). Just like cigarettes, I anticipate a few false starts before I move towards a healthier, happier life, free from post-drinking remorse. Just to be clear here, I’m not talking about binge drinking or hangovers or behaving badly. My drinking behaviour is what the vast majority of my friends would consider normal. That in itself is a worry. We used to smoke at our desks at work too, and while we were driving around in police cars. Times and standards change.

The trick for me with cigarettes was that I became sick of giving up. I used to joke that eventually I gave up giving up and that might be just the trick for alcohol. Stop. Enjoy the alignment of my behaviour with my values. Celebrate that unlike cigarettes, giving up alcohol will actually help me to stay a healthy weight. Find friends and activities that aren’t associated with alcohol and, at least for a time, avoid friends and activities that are. Except my husband drinks wine! I wonder if it’s reasonable to ask him not to drink at home for a while, just until I find my feet. Is that any different to asking him not to bring chocolate home when I’m trying to lose weight? I guess it never hurts to ask.

Oh wait. He turns 60 next month! How could anyone celebrate a birthday without alcohol? And that right there is the problem. It’s so much a part of our culture that deciding not to do it is seen as just a bit odd. I’ll just tell everyone I’m the designated driver. That should work.

I notice that even as I write my brain throws up objections. My daughter gets married this year. Won’t I want to toast the bride and groom? How about afternoon wine on the verandah with my husband? Do a really want to give up what has become a ritual that connects us after a busy day?

I have a cousin who gave up drinking some years ago. She tells me that it’s a grieving process. Perhaps that’s another layer to all of the various layers of my grief. My inner three year old wants to throw a tantrum and insist that I ‘deserve’ alcohol.

Maybe I need to give her a big hug and explain that I deserve good health much more.

 

Goodbye my friend

My friend, Ricki Hayes, had lost her long and painful battle with triple negative breast cancer. I will miss her.

Death was expected. I received a message from her beloved and endlessly supportive husband of 37 years, Terry, on the 28th of December. She was in pain which the doctors were managing “as best they can” and it seemed she only had a few more days. My sadness at her passing is tempered with genuine relief that she is no longer in pain. I nursed my father during his lost battle with cancer and I can appreciate how distressing this last ten days must have been for Ricki and her family.

I met Ricki through the Breast Cancer Network Australia (BCNA) site when I started sharing some of my blog posts with other women dealing with breast cancer. Rick was a long term survivor and still spent time on the site offering support and encouragement to other women. She started following my blog and was often the only person to comment on something I had written. On days when I contemplated abandoning it all, it was Ricki that encouraged me to keep going, to keep writing. “You put into words what so many of us are struggling to say.”

It was Ricki that first suggested I should write a book about dealing with the fear of recurrence that plaques people living with cancer, and people dealing with life after cancer. I am certain I would never have written it without her encouragement. She was the first person to receive a final copy of the book.

Rick described herself to me as “ordinary”. She was a devoted mother and grandmother, a loving wife and like so many women, she wore many other hats. Her career as a teacher earned her a legion of loving ex-students and her involvement in her church gave her a community of faithful friends.

Her commitment to helping other women with cancer went beyond the online support she so frequently offered through BCNA. She volunteered to allow researchers to test new drugs and methods on her. “If being their guinea pig can save someone else then that’s enough for me,” she told me. She was also an active online advocate for a host of important issues, including marriage equity, access to medical cannabis and the PBS listing of potentially life saving cancer drugs, including Keytruda, that are currently too expensive for most people. She talked openly about what life with metastatic cancer was like, and supported so many other women going through a parallel experience.

When Ricki knew she had reached the end of her treatment options and that a slow decline into death had become inevitable, she sent me a short message to let me know and I wrote back expressing my sympathy and support. I am still struck by her reply. Here it is:

Thanks for your calming words Meg. As I was showering …(.best thinking place without distractions and love the sound of running water!!!) how liberating I felt knowing I could spend time and energy on ‘living’ rather than always feeling as if I was fighting an enermy/ pushing through nausea etc 😊 I know there will be days that are tough….thats part of normal life anyway, but the feeling of liberation the I have today far outweighs anything else. I have been and are blessed in SO many ways, how dare I complain when there is so much suffering by those who are displaced by war, greed and the push for power.

I’ve had the excitement of adventures at home & overseas; the privilege of study and encouraging little minds to delve into the future; to feel suffering so I can better understand and walk with others who are there; but mostly I have known so much joy and that is what I wish to focus on. My family, my friends near and far, my environment … wherever I find myself each day….the other things I cant control so I’ll leave them to those who specialise in them!

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live!

Thank you for your support encouragement, knowledge, friendship and love.

I would not have been at all surprised or critical if Ricki had been despondent or angry at the news that there was nothing other than palliative care available to her, but here she was rejoicing. Life was wonderful. She was going to keep living every second of it, right up until the point when she couldn’t. Her compassion for others and her love for family and friends was always at the heart of who Ricki was, and that’s how I’ll remember her.

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live. Yes. YES. We are all dying. When we come to understand that, all the way down to our temporary bones, something wonderful happens.

In early November I headed down to Sydney for what I knew would probably be my last visit with Ricki. She had sent me messages about the pain she was experiencing and the endless rounds of radiation they were giving her in an attempt to reduce some of the tumours. I expected to see a frail shadow of my friend. Instead I was met with laughter and jokes about dying. Surrounded by flowers, Ricki told me that her dearest wish was to have one last Christmas with her family. Terry tells me they spent it going through photos and enjoying happy memories together. I’m so glad she got her wish. She went downhill quickly after Christmas. I suspect she had been hanging on by sheer force of will but Ricki would no doubt want me to credit God.

Making friends with other people dealing with cancer is fraught. On the one hand, you have so much in common, and on the other there is a reasonable caution about forming close bonds with someone that clearly has a life threatening illness. Will we come to care about each other only to grieve? I would not have missed the opportunity to become Ricki’s friend. We have been through some rough times together and sometimes the only person that can really understand the internal landscape of cancer treatment is someone that has travelled it. The black humour is too much for the uninitiated and our desire to spare our families our darkest thoughts makes these kinds of friendships very special. At one point it looked like I might die before Ricki. Her friendship never wavered.

This is real friendship. Holding tight to each other when you know that death might be just around the corner. Sharing messages of support like notes passed under a desk in a classroom when you know that those messages might be uncomfortable or confronting for others. Fiercely hoping, sometimes against the odds, that survival is possible and ultimately, accepting death with the joyful grace that Ricki has taught me. I will live a better life for knowing her. I will die a better death.

Farewell my dear friend. My heart goes out to your precious family, particularly Kathryn who is so like my Zoe. You will live on in their hearts and in mine.

I wanted to say you were anything but ordinary. I don’t want to contradict you. Instead I will say this; you demonstrated that an ordinary life can be a very extraordinary thing. All my love and gentle hugs.