This board might not be the right place for this, but I hope that people find this both to share their experiences and to learn from others.
The title of yesterday's webinar "Stuff mates don't say" really sparked my interest (rightly or wrongly - gals can be mates too) in men's issues, and whether there really are men's issues. So this is a first in a series of questions that I would like to pose to all of you out there.
How did you go about disclosing your diagnosis of cancer to your:
For me (sorry if this is a bit long)…
I'm keen to hear from you all.
Hugs to everyone,
My family my mate and his wife were camping at Uluru in NT,I hadn’t been feeling to good on that trip.MY Grandaughter said my eyes and skin were turning yellow I took no notice thought I was getting a tan I was not thinking straight My body was suffering from an infection I later found out ,I went to urinate and could see my urine was like black tea, I finished up at Alice Springs hospital a few days later after describing my symptoms to my GP by phone he told my daughter to drive me straight there, we were hundreds of klms away in the outback .
After an ultrasound of my pancreas it showed an abnormality two surgeons came to see me the next day and said It was possibly Cancer,At that stage I was pretty ill and did not fully take it in there was a few problems with the CT as they weren’t certain I said to my wife it could be cancer but they weren’t sure my wife and I were booked on a flight home to Victoria next day,I was heavily medicated,my daughter was driving the car and camper home with my mate accompaning them,I had bloods and a Ct when I got home,the medication I was give helped me,I seen my GP for results ,The CT was unremarkable,but my bloods weren’t good I was driven to a public hospital my GP recommended he wanted me treated at a particular hospital ,instead of going by ambulance and maybe not getting where he wanted me treated at a public hospital, I was wheeled straight in to an emergency bed ,I then had an ultrasound and CT ,next morning it was confirmed I had Pancreatic Cancer.My wife and I were devastated my daughter and Grandaughter were still on the road heading home so we decided not to tell them until they got home.
My brother and his family were told of the diagnosis by my wife, at this stage I was very ill in hospital
My daughter and grandchildren were told when visiting me it was very emotional for all.
The word soon got around with my small band of good friends and the support started straight away,it certainly has helped me over the journey.
Sorry it's taken a little while to respond. Thanks to RJG and kj for getting the ball rolling.
There are common themes in these forums - you can stumble into little bubbles of insight around having or dealing with cancer. One of the sad themes is where you'll sometimes read about how isolated and alone some people feel. They have little/no/estranged family, and can't think to face cancer by themselves.
Me ? Ohh what bliss that would be.
For me, the gravest (and ongoing) concern about cancer is surviving long enough that I do not subject my young children to the trauma of losing a father. In ten years, my youngest son will be turning 17. That's still a bit early, but OK - I can wear that on the chin. Ten years it is. Minimum survival required. My eldest will be 20ish, my middle guy who is autistic will be 18ish. Abandoning any of these children is a kick in the guts that completely unmans me. Even contemplating it ten years from now leaves me awake at night, staring into the dark, fretting. "Will my autistic guy be OK ? Will he stay strong and happy ? Will my death de-rail him ?"
So .. when you have significant people in your life, I personally think it's harder. Working out how and what to tell them is part of that.
So. My answers:
Partner. Well, she deserved to know. So I went from the hospital, home, sat her down and told her. Thing is there's TRUTH and there's truth and there's "truth". I carried the weight of some of the hard truths - there were just too many unknowns, and if I said stuff like "the doctor said that I have maybe 6 months if treatment doesn't work out" .. or "hey, I was reading online, and it looks like my type and staging of cancer has a raw survival rate of about 40%" .. well, she would zero in on some of that stuff and potentially break down. I'm not saying that I deceived her, or withheld crucial information or didn't have faith in her ability to cope - it's a little more subtle than that. I did a strategic and carefully considered diagnosis of what information was fit for release, and triaged accordingly. It's worth noting that this wasn't entirely heroic too - I needed her strong and sound of mind, it would only cripple me to find her awake crying in the night. It was basically a careful assessment of what was best, hard facts or massaged truth. So .. yeah, she had transparency - she was included in the clinic where we asked doctors more questions and learned more about the disease - but, basically I chose to give an immediate disclosure, but I always took a more optimisitic outlook than the raw facts might have justified. In retrospect, I still strongly believe that was the right choice. I think it's what she wanted and needed. Keep it as light and breezy as you can … until you can't.
Immediate family: I chose to withhold that it was a life-threatening illness from my children. I eased them into that daddy was 'quite sick' and that he had to visit hospital overnight a few times - they just didnt know it was for chemo. My intention was to ease them into the information as I myself had more discovery - and once I got the all clear after the treatment phase, I gave them a heavily curated version of it. If my prognosis had only deteriorated, at some point I would have sat them down individually and done my best to explain it - as well as recorded messages for them later in life, as they aged, so that they could have a little piece of me left over after I was gone.
Extended family: Kind of estranged, and over this experience they only showed me more of why that estrangement happened - so I cut them off completely. A disclosure was made, that's all.
Friends: I don't keep many friendships, only the extremely long-term and close kind. I explained my situation, and that I was tackling it head on and didn't want any distractions. They were there if I needed someone to talk to - but, I didn't. My personal preference was to 'circle the wagons' and focus my capacity and energy on fighting the disease, and on being with my immediate family.
Rest of the World: situational, if it's in some way meaningful to talk about it, I do. It's just another fact, unadorned by any kind of discomfort or awkwardness. If it's relevant to a situation, I talk about it, if it's not, I keep it private.
It's probably worth exploring that cancer isn't a battle, it's a campaign. It might feel like, after seeing the white flag and winning the battle you think "aaah, it's over".
But it's not.
For the rest of your life (and especially for the next 5 years) recurrence fear will follow you around like an unwelcome shadow, potentially tainting or distorting a lot of the light you might otherwise have in your life.
You'll carry that anxiety. Especially in the first few years after treatment. Depending on the class of cancer, the side effects can be horrible. And every little cough, every choked up piece of phlegm, it reminds you of that chronic cough that brought you to the doctor and began the whole original diagnosis.
So you worry. And you have to decide who to share that with, and how much to share.
So you run through that list again - partner, family, friends, rest of world.
My two cents ?
Conventional wisdom, and anything from an entity (like cancer council) will be 'rest of the world' --- Support Groups ! Professional Help ! Naaah. Maybe that's for you, not for me.
Partner, Familiy ? Poor buggers, they've already been through the trenches, and may be feeling that they've come out of a tunnel. No need to drag them back in every time you start to worry about what that little lump is and is it going to kill you.
Friends ? Yeah, potential there - but it's probably worth being a bit tactical in how you use it - I mean, do you really want your time with your friend to be dominated by this disease which already dominates you ?
For me, the only answer winds back to that Manly Stereotype. Find your inner strength. Adapt and carry the weight of it yourself. Until you can't.
Is that ignorant ? Maybe. I think you become strong by solving your problems, and the first and best recourse is available to you right now. It's inside you. Try that. Focus on it. Develop it. Until it doesn't work. Then .. well, for this recurrence fear stuff .. maybe a counsellor or something.
But yeah, that's just me. Actually modelling your own patterns after mine would probably be inadvisable.
For me, the only answer winds back to that Manly Stereotype. Find your inner strength.
Adapt and carry the weight of it yourself. Until you can't.
It's interesting that you should say this.
I think, often as adults, there are things we feel that we just need to get on and deal with it.
I've sought counselling or assistance from a therapist/psychologist on three occasions in my life.
Two of them were around the time that my father died. The first one I saw was a therapist. He asked, and I told him why I was seeing him and what had happened proceeding this. The look on his face was priceless. The next sentence was "I think given what you've been through you are doing amazingly well, but what can I do to help?". I didn't bother going back.
The next one was a clinical psychologist, but after two sessions, she conceded given everything that had happened there wasn't much she could do. Righto. Next.
I think you're right. I'll just carry on. Until I can't.
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