Medical marijuana vs Endone for pain relief

When people who are about to start chemotherapy ask me what helped me through cancer, I give them a list. Weed is at the top of it.

It’s not something I’ve written about while chronicling my treatment, but with the federal government moving to loosen restrictions on imported medical marijuana, now is a good time to have a rational discussion about its benefits.

There are groups that will cry foul at this and rage about the insidious nature of the drug, that as a nation we are all going to become addicts, but chances are if they saw someone they loved convulsing from the pain, they’d hand over that spliff.

Medical marijuana is not about getting stoned or feeling high. It’s about natural pain relief with minimal side effects.

Modern medicine is wonderful and I thank it for keeping me alive, but everything comes at a price. The Hippocratic oath may be ‘First, do no harm’ but chemotherapy is the exception that proves the rule. It’s a brutal treatment that wreaks havoc on your whole system, breaking your body in order to cure it.

The accepted way to deal with it is to prescribe opioids such as Endone or OxyContin, otherwise known as hillbilly heroin.

My pharmacist was so concerned when I went to fill out my prescription that he sat me down and talked through how to take it. This was the man that had been supplying me with all my chemo meds, but he was more worried about Endone than anything else. Two footballers had just overdosed on Oxycodone and he wanted to make sure the same thing didn’t happen to me.

Endone is prescribed to chemo patients as pain relief because it works. It’s strong enough to stand up to all the other drugs floating through your body. But it comes with nasty side effects, including potential psychotic episodes, difficulty breathing and hypotension. Did I mention the psychotic episodes?

Addiction is easy, because it kicks in almost instantaneously. Like a pillowy bed that you gently sink into, it takes the aches out of your body so that you feel like you’re floating. It’s the medical version of a lullaby, soothing you to sleep. When you wake, often in agony, it’s all too easy to grab another and repeat the process.

I stopped taking Endone when the side effects became too much to bear.

I switched to marijuana because it also offers pain relief, causes drowsiness which is blissful when the steroids I was taking for chemo gave me insomnia and as an added bonus, it stimulated my non-existent appetite.

I talked to all my doctors about it before taking it and there were no contra indications so I went ahead. It gave me all the benefits of Endone without the side effects.

If medical marijuana had been legal, it would have been easier to find, I would have known exactly what I was getting and my oncologist would have had a viable pain-management alternative to offer me.

The biggest arguments against marijuana as pain relief are that it’s illegal and potentially addictive.

If the government approves medical marijuana it will be legal. And, as someone who has taken both forms of pain relief, I can tell you that it is a lot less addictive than legal heroin.

 

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Fu*k the cancer Facebook slacktivism

As a relative newbie to Facebook, I’m bemused by all the slacktivism. Share if you believe we need to cure cancer, like this page if you think society should stop animal cruelty, share if you think the best flavour at Gelato Messina is salted caramel.

It’s all pretty pointless stuff. Of course we want to cure cancer, yes animal cruelty is barbaric and who wouldn’t choose salted caramel over something as boring as peppermint choc chip? Any other answer is just crazy.

But yesterday I got angry.

You may have noticed red love hearts popping up on your Facebook feed. No comments, just the heart.

What does it all mean? Pre-valentine’s day prep? Are all your friends in love? Was there a sale on at the emoticon store?

Turns out it was for breast cancer awareness week.

Well of course it was. Everyone knows the best way to promote something is to do it via stealth.

What are the chances that the women who posted the pretty love hearts, who patted themselves on the back for doing their bit, actually went home and checked their boobs?

Forget the fucking hearts and spread information instead. How many women know how to do it? The best time of the month to do it? What to look for?

Let’s let go of the idea that only women over 40 should be checking their breasts and start them young. When we teach girls about their period, we should also teach them how to check their breasts properly so that it becomes an ingrained monthly habit.

Let’s start a conversation and get people talking.

People often ask me about my cancer and then look embarrassed, telling me I don’t have to talk about it if I don’t want to. But I do want to, because knowledge is power.

When I was diagnosed I sought out women who’d been through it, because I wanted to know as much as possible about what was coming up. I’m incredibly grateful to those who went before me for sharing their experiences and I do the same.

When people share publicly, whether online or via their celebrity it has more power because the reach is greater. It’s easier to explain my BRCA diagnosis because people always go, “Oh, that’s the Angelina Jolie gene.” If only I had more in common Ange than just a predisposition to cancer.

This week, I chatted with a woman who knew my story and wanted to share hers. She found a benign lump in her breast and although her mum had breast cancer and the BRCA gene, she didn’t know if she wanted to get tested for it. We spoke about our shared experiences of biopsies and mammograms, we discussed the pros and cons of being tested and, if the test result is positive, what to do next.

So forget the slacktivism and spread information instead.

 

 

 

Tamoxifen, taxanes and temperature rises

Summer used to be my season. I’d grumble my way through winter and as the weather got warmer I would shed my misery with each layer of clothing. There’s nothing like that day in September where it’s hot enough to wear a tank top and feel the warmth of the sun on your skin for the first time in months

But it’s now December and two days into a 37C heatwave, I’m exhausted. Thank god I’m on leave this week, because I wouldn’t have made it into the office.

The Boy and I set the alarm for 5.45am to walk Scoo before it got too hot and even though we were home by 7am, I was a hot, sticky, breathless mess. I barely managed to make it up the hill and for the second morning in a row I had to lie down after we got home.

I couldn’t figure out what was wrong, then The Boy asked if it was tamoxifen related and it all made sense.

Tamoxifen screws with my body temperature. Physically, I am hotter than I used to be and it’s not just during the hot flushes. This made winter a lot easier, but if we have a scorching summer I’m going to really suffer.

It’s not so much that one hot day, but when they bank up. A few weeks ago a 35C day was great, because it was surrounded by a week of 25C weather. Now though, mid December, the bricks have absorbed all that heat and held onto it, like a child hoarding its chocolates after Easter, so they’re never quite cool down. So take the forecast temperature then add a few degrees for the heat emanating out and up from old brick buildings and concrete sidewalks, plus a few more from tamoxifen, and that’s where I’m at.

My newfound sensitivity to heat is probably a combination of the tamoxifen I’m taking now and a residual side effect of taxanes.

I remember last year, towards the end of chemo when I was supposed to head out on a 30-something-degree day, I made it out the door and down the steps before I had to lean against the wall, catch my breath and go back inside. I just couldn’t do it, it was all too hot, too stifling, too much.

Another day where I discovered itchy red bumps all over my body. Even the soft cotton of my maxi dress, which I wore to protect my chemo-sensitive skin from the sun, was exacerbating the prickly heat rash.

A quick Google shows taxanes, a class of drugs given during chemo, causes heat intolerance that can last years after chemo. Great. And tamoxifen ups your core body temperature so it’s harder to regulate heat. Double great.

I’ve spent the day in my apartment, with the windows and doors closed, sitting in front of the fan in an effort to keep cool when I’m the person who usually redirects airflow so it’s not coming straight at them.

To escape the apartment and test The Boy’s theory, I took a quick walk around the block with Scoo this afternoon and my back, which was to the sun most of the time, is all hot, scratchy and angry even though I wore a T shirt so it didn’t have direct skin exposure. He’s right. Not normally something I like to say in the best of circumstances, but really wish he was wrong on this one.

I’ve always loved the epic thunderstorms we’d get after a heatwave and the sweet relief they’d bring. The temperature would soar close to the 40’s for a few days before the air cracked, decorating the sky in streaks of lightning to the tune of thunder that sounded like fireworks. Now I’m looking forward to them for a whole new reason.

Chemo, a year on

On this day last year, I had my sixth and last chemo session.

There are a few dates I won’t forget, my diagnosis day and this one.

Looking back at my day today, which was all sunshine, long walks, good food, coffee, beer and hanging out with my boys, the dude and the dog, makes me realise how much I have to be thankful for.

Last year I couldn’t have spent the day in the sun, my skin was too sensitive, I wouldn’t have had the energy to walk around Paddington, Double Bay, Darlinghurst and Rushcutter’s Bay, I had no appetite, I couldn’t drink coffee as it dehydrated my mouth and beer was out because all alcohol tasted metallic to me.

Life is so much sweeter now and as well as learning to appreciate the good things in it, I’ve also learnt a few other lessons.

Be kind to yourself
I remember at a checkup a few months after chemo where I was complaining to my oncologist that I wasn’t where I wanted to be physically and mentally. She gently explained that it can take a year to recover from chemo. It wasn’t what I wanted to hear, I expected to be back where I was pre cancer and I was frustrated with my progress, but the more I pushed the worse I felt. So I learnt to back off, give myself some slack and let my body heal at its own pace.

Be selfish
If there’s ever a time in your life when you come first, this is it. Made plans when feeling OK but then hit with a bout of nausea an hour before going out? Cancel. Want to spend the day watching back-to-back Law & Order episodes? Do it. Don’t feel guilty. I had planned to catch up on reading in between chemo sessions, but a case of chemo brain fog meant I couldn’t concentrate on anything more than a page. So it was trashy TV all the way and I was cool with that.

Celebrate small milestones
At times it felt like nothing was happening, but then I noticed that little things in my life were changing. I grinned the first time I made it up the hill without having to stop and gasp for breath. I was so proud of myself the first time I got through a whole day without having to nap. I saw myself in a new light when a stranger asked where I got my haircut and I realised I no longer looked like a chemo patient. I didn’t wake up one day and feel amazing, but I realized that these were all markers of my progress, small milestones that meant I was a step further away from the oncology ward.

Let people help you
People want to help you. Let them. Asking for help is difficult, but for most people having a loved one go through chemo is unchartered territory and they don’t know what to do. My big issue was loneliness. I felt isolated being home sick and realised that if I asked, people would happily drop in for an hour on their lunch break or take a day off to keep me company.

People are awesome
I was overwhelmed with love and support when I was diagnosed. From my girlfriend who flew interstate to see me the weekend after I broke the news to unexpected care packages from acquaintances and protective talismans from colleagues. It was as if the universe was giving me a great big hug and saying ‘You got this.’

And then there are those that aren’t
It took me a long time to realise that when someone doesn’t step up, it’s about them rather than you. Getting a big blank from someone you expected to have your back, whether it’s family or close friends, is devastating but it’s not worth the stress or energy. Some people don’t have the emotional intelligence to deal with mortality, whether it’s yours or theirs, so they ignore it or try to minimise what you’re dealing with. Fuck them, they’re not worth it.

The merry-go-round of medical appointments

It’s exhausting being sick. Not the actual feeling ill part, but the whirlwind of checkups, appointments and referrals that surround it.

You have a main doctor that has an overarching view of your care and treatment, in this case my oncologist, and then there are the other specialists who do their part. At its peak last year, I had my main oncologist, a radiation oncologist, gynaecological oncologist, GP, breast surgeon, plastic surgeon, genetic counsellor, IVF specialist, lymphoedema physio and exercise physiologist.

And they were just the ones I had to see regularly.  I’ve lost count of the one-off appointments, blood tests, X-rays and bandage changes that I also had to fit in.

It drains you, physically, mentally and financially. I was reminded of it this week when I had to schedule a GP referral, blood test and ultrasound before attending a specialist appointment next week. Fitting it all in during a working week took a bit of juggling and made me thankful I have a flexible working arrangement.

Going from doctor to specialist, blood test to X-ray, appointment to appointment is a full time job. It’s a  whirlwind of phone calls, confirmation texts and those little cards clogging up your wallet, reminding you of the next appointment.

Those cards are notoriously easy to lose and when you add in a case of chemo brain, a forgetfulness akin to baby brain, you have no chance of remembering where you need to be.I found the easiest way to keep track of it all was writing it down in a proper, old-fashioned diary. A small pocket one which fit easily in my handbag and displayed seven days over two pages I could easily see how much I had on every week.

The first week I opened that diary to see no appointments, I cried. It was such a relief. I didn’t realise how big the weight of having to be somewhere every day, at a certain time, regardless of how I felt, was until I didn’t have to do it anymore.

So much about cancer treatment is automatic. You just keep going because you have to. It’s not as if you can skip a scheduled radiation treatment because you really don’t feel like getting off the couch that morning.

Radiation was a big one, every day Monday to Friday for six weeks. Luckily it was always around the same time every morning so I could plan my day around it, but by week four the fatigue was kicking in and it would take me longer and longer to walk the four blocks to the hospital. Yes walk. I know that compared to others I was fortunate to be able to walk to the hospital and most of my appointments rather than have to drive and worry about parking or take public transport, but it was still exhausting.

When I finished radiation in March, I was thrilled that I no longer had a daily medical commitment. At the end of the six weeks, I met with my radiation oncologist I asked her when I had to see her again, thinking it would be annually at least. She told me I didn’t. She’d done her part, I responded well to treatment and fingers crossed we never had to see each other again. I whooped. Loudly. Then I felt bad, apologising that it wasn’t because I didn’t like her, but it felt good to cross a doctor off my list. She laughed, she got it.

Now, my medical list has shortened significantly. I see my main oncologist every three months and my gynaecological oncologist, breast surgeon and plastic surgeon annually. I know that it’s a long way off, and that cancer is treated rather than cured, but eventually I hope to step off the merry-go-round completely.

Cancer is a chronic disease

One of the major mindfucks when dealing with cancer is that it doesn’t have an end point. Even being classified cancer free or in remission doesn’t mean you have the all clear. It’s a virus – one that affects other parts of your life, your health and your mental wellbeing – that you can never shake off, no matter how hard you want to believe Taylor Swift.

If you break a leg, they reset it, fix it and you’re on your way. Done. Back to your life before the accident. You don’t have to take that broken leg into account two years later when deciding on future medications, risks, contraindications and complications.

It’s been five months since I’ve finished active treatment and I’m looking a lot more like me. Hair, brows and lashes are back, not quite the same but close enough. Cheekbones, once dormant under that puffy orb which replaced my face while I was on steroids, have popped back up so my face finally has definition again. I’ve lost those extra chemo kilos that were stubbornly hanging round.

I’m looking, and feeling, good and everyone is cheerfully asking me whether it’s all over now. They’re confident enough in my appearance to ask and they can’t hide the expectant look on their faces, a sweet indication that they’re rooting for me, and yet I can’t give them the good news they want to hear. So I just tell them that the heavy lifting is over and now I’m on medication for the next few years.

What I don’t tell them is that by a few, I mean five to ten years. That while hormone therapy will theoretically increase my chances of long term survival from breast cancer it also comes with nasty side effects such as an increased risk of uterine cancer and sometimes debilitating menopausal symptoms.

I could accept this a lot better if I knew there was a guarantee, a final full-stop at the end of it all. Case closed. But there are no absolutes with cancer. Even following my doctor’s recommendations, my long term survival rate is only in the high 80’s. When she ran my numbers, which looked at my type, grade and stage of cancer and how the combination of chemo, mastectomy, radiation and hormone therapy would theoretically increase my lifespan, I was expecting to be high 90’s. After all, I did everything they told me to do. So that was a startling blow.

And now, my circumstances have changed and we’re discussing adding a new medication to the mix. One that will shut off my endocrine system, plunging me into the depths of a chemical menopause and all that entails, including depression, hot flushes, insomnia and osteoporosis. Overnight I would have the body of a 60 year old. My oncologist very patiently and methodically pointed out new research that showed zoladex in conjunction with tamoxifen had a 35 per cent benefit in two groups; women under 35 with early stage breast cancer and women who had an advanced stage tumour with lymph node involvement. I belong to both of those groups. But then she went on to explain the relative benefit, which is this benefit divided by my projected survival rate, was only three per cent.

So now I have to make a choice, but even with all this information I’m still flying blind. For all the research, studies and data out there, there’s nothing to guarantee the result I want.

But the biggest mindfuck? I could stop every one of my medications, rid myself of the accompanying side effects and remain cancer free until I die of old age. I could also take the scary drugs, remove my ovaries, potentially give up my chance of conceiving and it could still come back.

 

My Cancerversary

It’s been a year since I was diagnosed with breast cancer.

I realised my cancer anniversary was coming up last week, wondered if I should do something to commemorate it and then promptly forgot about it until this morning. It was two days ago and it slipped past as if Thursday was just a normal day. I woke up, walked the dog, worked, worked out and had dinner with The Boy at home like it was an ordinary day.

Which I find strange, because the date June 2 is burned into my brain. When people asked me when I was diagnosed I don’t hesitate on the number even though I have to stop for a second when someone asks me my age.

So I assumed I’d wake up on Thursday and I’d feel something.

I guess it’s not like a birthday where you anticipate it. Birthday’s are joyous celebrations full of presents, booze, fabulous dinners and more presents. I want to celebrate birthdays. But cancer anniversaries aren’t necessarily positive milestones. They’re often commiserated rather than celebrated.

Yet  I need to acknowledge it because it’s been a fucker of a year and I choose to celebrate where I am right now. The ground I’m standing on is not as solid as it was before cancer ripped through my life, but it’s safer than it was a year ago.

My diagnosis felt like the tornado that swept up Dorothy and Toto and transported them to a strange place where everything was terrifyingly unfamiliar and they had not choice but to set off on a course that was not of their choosing in order to get back home.

I didn’t want to do any of it. My yellow brick road was fraught with pain, danger and loss. When I thought about what lay ahead of me it all seemed too hard, too scary, too much.

And yet, here I am. Which is definitely something to celebrate.