- KATE ELIZABETH -
An important note, this list is from my experience with a Grade 1B1 adenocarcinoma of the cervix.
I do not know the first thing about dealing with the intense physical and mental aspects of terminal cancer.
To those warriors, I bow down before you.
Some of these things may also be relevant for those dealing with chronic illness, mental health issues and grief.
1. Firstly, and MOST importantly, be your own health advocate. Doctors are amazing, but they are just people and they make mistakes. They also only speak from what they know, and their opinions are just that, opinions. Get second and third opinions. Doctor shop. Google. This is your body, your health. You only get one go at this. Arm yourself with all the information you can. Take control.
2. Start a phone tree. Having cancer is shit enough without having to tell people you have cancer because you end up comforting people through their grief for you. It’s weird and you don’t need that right now. Get your partner, friends, family to spread the word to the people that matter.
3. While you’re at it, tell people that there will be (many) days that you don’t feel like talking or replying to texts. But that this doesn’t mean they should stop trying. My friends knew that I wouldn’t always talk but having a missed call or a text that started with ‘no need to reply’ was enough to make me feel supported.
4. Waiting SUCKS and for me it was the hardest part. Seriously, worse than when the physiotherapist made me get out of bed the first time after my surgery and I accidentally let a C-bomb slip out (no wasn’t calling her a C***, it was the pain talking). Not having answers and not having a plan is scary as hell. If you can get through those dark days of nothing, I promise you can get through the rest.
5. Get a psychologist. I wish I had done this earlier. Instead I waited until I was almost at my breaking point and it took a hell of a long time to put myself back together. Find someone who does phone/Skype appointments, so you don’t have to leave the house. Personally, I find face-to-face psych appointments a bit too intense because I’m normally concentrating too hard on making appropriate amounts of eye contact
6. Get a Mental Health Care Plan from your GP. They allow you to get up to 10 sessions with a psychologist at a heavily discounted rate. You are then able to get several reviews of this plan which provide for an additional four sessions per review.
7. While you’re at the GP speak to them about getting a referral to a qualified specialist who prescribes CBD oil through the Special Access Scheme. CBD oil does not get you high and does not affect your ability to drive, it does however have some serious scientific backing regarding its ability to kick cancer in the ass. At $200+ per bottle, it is not cheap unfortunately, but the prices are slowly going down the more legal crops are planted. This specialist doctor can also prescribe THC for pain but this will get you high and will prevent you from being able to legally drive. Getting proper prescriptions is a bit more hassle and a bit more expensive than buying it under the table from some guy at the markets but at least you know you’re getting the real deal.
8. Don’t go alone to CT’s, PET scans or MRI’s if you can help it. There’s something about being alone in those machines and your thoughts that is pretty soul destroying so it’s always good to see a friendly face when you get out.
9. You will not piss yourself in your PET scan, it will feel like you’re going to, but you won’t.
10. After scans, it might be a good idea to do some research about how to detoxify your body from radiation and the shit you’ve just had cursing through your veins. I did not do this but I wish I had.
11. If you are open about your cancer journey on social media and use hashtags like #cancerjourney, people will find you and they will try and sell you magic potions that cure cancer. Spend your money on therapy, not essential oils. They are good for calming you and making your hospital room smell less like a hospital room but they will not cure your cancer.
12. You are allowed to be ‘active’ on social media and not be replying to texts or answering calls. Some days making an Instagram post or story is enough to make you feel connected to the world when phone calls are exhausting.
13. Take notebooks to your doctor’s appointments. Even if you have someone else with you, odds are they’re a friend or loved one who’s also traumatised by the fact that you’ve got the Big C that neither of you will be taking in the information. You’re not in Kansas anymore Toto, this is a whole new world where they speak a whole new language, write that shit down.
14. If you are a woman going through cancer, ask all the questions about how your treatment will affect your fertility. Unfortunately, this adds a whole new layer to the grief and confusions that cancer brings. I’m sorry.
Remember that YOU are the one going through this.
You get to decide how to live with it.
Whether that’s by keeping it on the down low, by cracking morbid jokes or by splashing it all over your social media.
No one gets to tell you how to do cancer.
Also be wary of people who want to steal your grief.
Some people really embrace tragedy that happens to others and this can get a bit gross.
Create your own cancer-kicking team.
Before I got cancer, I thought that when you were really sick, all of your doctors and other health care professionals, met in some glass walled conference room where they had your headshot on a whiteboard and everyone chipped in about all the ways they could make you better.
Like on House or Scrubs.
But this doesn’t happen.
It’s left to you to find a team of people who can help.
This includes those that can help you through cancer and those that can help you after cancer.
As well as your oncologist and GP’s, some of the ancillary health services I have found useful include physiotherapists, massage therapists, acupuncturists, chiropractor, occupational therapists, Lymphoedema specialists, psychologists, endocrinologists and social workers.
I live in a rural town so I’m sure that there are many more services in cities, but you must be proactive in finding them.
Cancer is expensive.
Accept the charity.
You might not feel deserving and you’ll probably feel that so many others are worse off than you but accept whatever your amazing people are willing to give you.
If you get better or if you have any money left over, pay it forward.
And probably the biggest lesson I learnt was that cancer will change everything and nothing at the same time.
I expected some massive life affirming epiphany when I got cancer.
I expected that I would magically stop caring about the insignificant and trivial aspects of life and go on to live some Eat Pray Love type existence.
But then I found myself arguing with my wife after she didn’t make the bed and I realised that not much has changed after all.
Hopefully getting cancer gives you enough of a kick up the ass that you remember to enjoy ALL of life’s moments, not just the good ones.
But then again, it might not.
For more on Kate Elizabeth's cancer journey head to her Instagram page @theblissfulthistle .
Kate Elizabeth recently appeared on The Nasty Woman Club podcast and spoke about life after cancer. CLICK HERE for the full episode.
If you too would like to contribute to The Nasty Woman Club and tell us your story CLICK HERE.