Big Fat Disclaimer: Every cancer journey is different. This post is based on my own experiences from having stage 3 bowel cancer and it’s subsequent treatment. If you know someone going through this horrible ordeal, ask them what you can do. Don’t assume that we’re all having the same battle. And please, please don’t go missing from their lives.
1.- I know someone who died.
This is the top of my list because it’s simply soul crushing. From the time I was initially diagnosed I’ve had 3 people say to me “I know someone who had bowel cancer and they died”.
Really? Is that all you’ve got? The person standing in front of you has just found out they’re heading into the biggest battle of their life and here you are full of sunshine and happiness. Not!
Despite our positive attitude, towards our chosen treatment regimen, and hopes for the future. We still get scared. Deathly scared.
2. – You’ve got to get better for your family.
While this one isn’t as scary as the first, it’s equally as heartless.
I’m scared on a daily basis. For my deteriorating health, the dehumanising method of my treatment, the fear that, as shitty as I feel today, it may just be the best I’ll ever be. I want to believe that I’m going to get better but everyday I’m faced with waiting rooms full of people who look like they’ve already given up and just want the pain to be over.
And your response to this, is to remind me that I have a wife and children that need me. That somehow the needs of my dependants are far greater than my own need for recovery. Fuck You. Do you think I don’t know what my responsibilities are.
Everyday, I watch my wife walk out the door to attend a job that is destroying her soul because she’d rather be home looking after her sick husband. I know in the very depths of my soul that I am not being the parent my children need. I know this so much it hurts.
Fuck You. My heart is bleeding at my inability to be the husband and father my family deserve and it takes all the energy and humanity I have left to take myself to another radiation appointment where I will lay on yet another table with my pants around my knees and four people staring at my crutch looking for the tattoo marks to line their lasers up.
I know your well intentioned statement is to give me something to look forward to but all you’ve done is remind me that I’m currently a liability to the most important people in the world to me.
It’s no wonder that depression and suicide is so common among cancer sufferers.
3. – Clichés.
Phrases like “Don’t worry, you’ll be fine” or “I’m sure you’re in good hands” all sound like you don’t give a shit and desperately want this conversation to be over.
Not that we blame you. It really is an ugly and difficult discussion to have with someone.
Why not try this instead “Good Luck with your treatment, I hope it goes well for you” or if you’re a God fearing person “I’ll pray for you”. Do you notice how much more personal that sounds? I don’t have to be a Christian to appreciate that someone wants to pray to their God on my behalf. I appreciate that you would do that for me.
4. – Other hospitals and natural care.
Yes, Yes I too have heard how wonderful about the wonderful things they’re doing at XYZ Hospital or with this new method of treatment at such and such a place. However, it’s just not helpful.
When a cancer treatment team get together to discuss the care options for a new patient, within that meeting are people such as Surgeons, Radiation and Chemotherapy oncologists, their registrars, nurses, Allied health care specialists etc etc etc. Basically, some very very intelligent people.
Independently, I may also have recruited the help of some spiritual healers, nutritional specialists and anyone else that I can think that can not only keep me alive but make me thrive.
In order for my treatment to have the maximum chance for success, I need to trust that the people looking after me have put their many years of combined knowledge and experience to a plan that will yield the best result possible.
Your filling my head with doubt doesn’t assist this process.
5. -Patronising – you should have gone to your doctor sooner
Surprisingly, giving someone a lecture about when they or shouldn’t have been to a doctor to discuss the symptoms they’ve been having is hardly helpful either. Trust me. This discussion has already happened with my spouse and I’ve also been self flagellating over this issue so what I need now is someone to remind that I’m a fighter and that you’re here for support.
6. – How long until all your hair falls out.
It surprised me that some people didn’t believe I had cancer, simply because I had all my hair. Hair Loss isn’t a side effect of all cancer treatments. It just isn’t. There is no stereotypical cancer, treatment plan or side effect. We are all unique humans, so it stands to reason that our cancer journeys will be equally so.
Sometimes, I got so depressed I actually wanted my hair to fall out in the vain hope I might get a little a bit of sympathy from strangers because of it. Outwardly I put up a very brave and positive front.
But when I was home alone, laying in my bed, those were the days I’d succumb to the fear and cry myself to sleep.
7. – You don’t even look like a cancer victim.
Can we please agree to never say this to someone unless they’ve been featured on A Current Affair or some other equally valuable news resource.
Not only did I not lose weight during my treatment, in one 3 month period, I put on 25Kg. Seriously. My second round of Chemo was a drug called Folfox6 in which I was given an anti-nausea steroid called Dexamethasone.This bad boy was really good at calming my stomach, with the trade off that I was constantly hungry.
I don’t mean a little bit hungry, but gut wrenchingly so. During this period, I could get up from a Big Breakfast at my local cafe, only to buy a packet of chocolate biscuits for the drive home.
What can you do to help?
This is an easy one. Show up.
The most common thing people would say to me during my journey was “Call me if you need me”.
Trust me I’m never going to call you. I have so many people caring for me that I already feel like I’m totally dependent, so I will feel like I am a burden to ask you for more. So force your way into our lives. But be helpful, not a hindrance.
If someone you know has cancer, think of ways to make their lives a little easier. Use your skills.
If you’re a mechanic, there’s a fair chance your friend hasn’t serviced their car, even if it’s something they normally take pride in doing themselves. We’re more than happy to pay for it. We just can’t do it ourselves at the moment.
Are you a family? Then you already know that their family is drained and the kids could do with a day out on the weekend instead of being locked up with the cancer sufferer and his carer spouse.
Can you make a really good stew? Can you bring one around every now and again? Can you make a big one? We’ll have the leftovers tomorrow.
We know you care for us and you want to help. Take a little moment and think about what you can do. Trust me, it doesn’t have to be a big gesture to show that you truly care about us.
My absolute favourite memory from my cancer journey is the day my friend Michelle House turned up in hospital with a Cherry Ripe for me.
I had just spent two nights in Intensive Care after surgery, a couple of nights in which my poor wife had to witness a bunch of nurses try to hold me down as I tried to pull a breathing tube from my throat while coming out of my anasthaetic.To calm me down, they had to hit me with Ketamine. Apparently, I’d thrown one of the nurses across the room.
When Michelle bought that sweet delicious chocolate bar to my bedside. It told me that she gets it. That she knows I’ve been through hell and back and that she knows that I’ve got a long journey ahead. It said I know you probably shouldn’t have this but Fuck It. You’re my friend and I love you.
That’s all we really want. Over 30% of Cancer Sufferers also get hit with Depression.
Just stay in our lives and remind us you love us.