Coming Out!

[RJG]

Hi everyone,

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:

1. Partner
2. Immediate Family
3. Extended Family
4. Friends
5. The rest of the world

For me (sorry if this is a bit long)…

1. Partner – My wife been “with me” throughout my journey except for one occasion. It was Easter Monday. I was out in one of the paddocks on our farm when I noticed that I had missed a phone call from an undisclosed number. I called the phone message bank and there was a message from my gastroenterologist (GE). I had been in for a gastroscopy the Thursday before in response to experiencing difficulty swallowing. Hmmm… a specialist calling on a public holiday – that can’t be a good thing. I tried calling the GE straight away, but he was not answering his phone. I figured that I would have to wait until the next morning to get through to the GE. I did not tell my wife about this call; no point having her worry when we didn’t know what the call was about. I went to work the next morning and finally got through to the GE who used the “c” word at the end of his first sentence. He had already booked me in to see a surgeon on the Thursday of that week. I lasted another hour at work before telling my boss that I had to go home “for personal reasons”. I drove straight home to “share” with my wife the small amount of information that had been disclosed by the GE. When I got home, my wife asked why I was home so early. I told her that we needed to sit down and have a chat. I then broke the news to her pretty much as I have described here - chronologically. Later that week we got told that the cancer appeared to be isolated to the gastro-oesophageal junction and that my condition was considered curable.
2. Immediate family – We have 2 daughters in their early 30s. I waited until I had more information before disclosing to my daughters. I couldn’t get them together to let them know, but I used the same approach for both… “I have good news, and I have bad news. The good news is that my condition is considered curable; the bad news is that I  have been diagnosed with stomach cancer.” No point beating around the bush, and get it out quickly so that it all sinks in together. Since then, I was keen for them to ask me questions which I would answer if I could or get back to them if I couldn’t
3. Extended Family – Again, I pretty much just blurted it out – all over the phone given that we live so far apart. My main urgency in telling them was to alert them to the possibility of a susceptibility within the family – my second eldest brother had died from oesophageal cancer only a few years earlier
4. Friends – Given that we live out of town, I did this via email. I started sending out quite detailed narrations of my journey; I referred to these as “Communiques”. One of these Communiques was dedicated to me answering questions that they sent to me.
5. The rest of the world – I didn’t talk about it to the rest of the world until well after my total gastrectomy. I try to use any occasion to talk about what I have gone through with the “take-away” being to know yourself, know what is your personal “normal”, and do something about anything that is not normal before it gets to be too late. The other forum for me to spread the word has been this CCOC site.

I'm keen to hear from you all.

Hugs to everyone,

Rick

[Katekat]

What a meaty discussion!

Just bumping this one up and tagging a few of our regulars who may be interested in this:

@iloveyoudearly7, @CaptainAustrali, @sch, @PhilPepper, @Lampwork54, @Budgie, @Anonymous, @kj 

~Kate

[kj]

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.

[sch]

Hi RJG,

Sorry it's taken a little while to respond. Thanks to RJG and kj for getting the ball rolling.

1. Actually, my partner found out before I did. When I work up after the colonoscopy the surgeon and my partner were there. When my wife had arrived to pick me up, the surgeon had taken her into another room to deliver the news that during the colonoscopy they had found a large tumour in my bowel. He gave me a referral to a surgeon at a cancer center. My wife looked quite calm when she picked me up, but I'm sure that she wasn't inside.
2. My children (they are young) we told them that daddy was sick and was going to hospital to make him better again. My mother lives a long distance away, so I had to call her on the phone to deliver the message. My grandmother had recently lost her husband so I had to get some extended family to head over there first before I broke the news to her.
3. Because there was only a week or two between diagnosis and the operation, I didn't have much time to tell extended family before I went in for surgery. That, and I was getting a bit nervous about how large this surgery was (tumour removal and total colectomy + ileostomy. I called a cousin on the other side of the family. She did a u-turn and came in to see my in the hospital. She also helped spread the news through the family (I have a large extended family).
4. I gave a heads up to a mate a few days before I went in for surgery. He helped spread the news through some friends. A number of them came to see me a week or so after the operation. I looked well but I hobbled around like a very old man in quite a bit of pain.
5. I have no problem telling people that I have had cancer. It's no secret. I've just discussed it with people as the subject has come up. When I was diagnosed I'd been in a new job for 6 months and I was quite open with everyone.

[RJG]

It was only 2 weeks after starting a new sub-contract position with a new organisation when I got my diagnosis. Even though I was a sub-contractor, the managing director told me that he would find me a role - part time or full time - whenever I felt ready to to return to work after treatment. That sure took a huge weight off my shoulders. And he kept his word 🙂

[CaptainAustrali]

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.

ONGOING:

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.

[RJG]

Hi Captain,

Thank you so much for sharing your thoughts.

Having a young family must make the battle so much more of a challenge. I am in the fortunate situation that my kids are "grown up".

Additionally for me, my cancer was localised - no spread to lymph nodes let alone to other organs. Consequently, I consider myself (2 years post treatment) to be "cured" and don't have that perpetual question hanging over me about whether/when it will come back. While I do self-assessments from time to time, I am leaving the majority monitoring to the specialists.

Thanks again for sharing.

An extra big man-hug to you.
Rick

[Budgie]

In April 2012 I had a lump just at the edge of my left jaw. I thought it was to do with my teeth as I had a broken tooth near the lump. I went to the dentist, had the tooth fixed, but the lump, I was told, had nothing to do with my teeth & the dentist rang a maxillofacial surgeon & got me an appt with him that afternoon. Immediate alarm bells going off in my mind, but, I went to the appt & was told he had no idea what it was as it had a pulse to it. I was to go in for an angiogram to see exactly what was there & to clamp any blood vessels etc. Well I had the angio & nothing was done because it was a large mass of tangled veins they could do nothing with. It was decided I'd have an op to remove it. After the surgery to remove a lump 9cmx7cmx2cm from my neck, Hubby & I had a holiday. The day after we returned I had the follow up appt & I was told then that I had metastatic renal cell carcinoma. The doc was all gloom & doom & very apologetic. My husband wasn't with me at that appt because we'd previously been told the lump wasn't cancer, so thought we had nothing to worry about. Anyway, I went & sat in the car, wondering if I should call hubby then & tell him, or wait till I got home to tell him in person. I decided to wait, so I went back to work. He happened to call me to see how it all went. I ended up telling him then because I'm hopeless at keeping things from him. He was quite harsh on himself for not being there. I also told my boss then, which was hard because we'd just had a co-worker have surgery for colon cancer.
My husband & I are quite realistic & try to make the best of all situations. We talked about everything at each step along the way & have fully prepared my funeral & coffin (which is stationed in our lounge room ready & waiting). I fully expected to die long before this, but my body keeps surprising me.

As our 4 kids are all grown & flown the coop, I didn't have to tell them straight away & I wanted more info on everything before I did.
I went in for a CT & found the cancer had taken my right kidney, deposited itself right up against my spine at the L5 vertebrae & at the top of my left butt cheek, as well as the lump in my neck. I was 48 at the time of diagnosis- young for kidney cancer apparently, & it very rarely presents itself in the neck. Usually MRCC starts in the kidney & works it's way up in the major organs. So far, I've gone against all the rules for it, but rules are made to be broken. The 5 year survival rate for MRCC is only 8%, so I've done really well so far. I think I have my body's ability of going against the rules to thank for that, as at one time during my treatment, I had over 30 tumours in my body, but none in any other major organ except my left kidney.
Our children were told over the phone as hubby & I were living in Darwin at the time, & it was hubby who had to tell them, else I would have just burst into tears & not been of much use.
My siblings, I emailed as I have quite a few of them. They were all very upset as we'd lost our mother only 3 yrs previous to cancer. As well as loosing our eldest sister, grandmother & aunt to cancer, one of my other sisters & a brother also have cancer. So it's quite prevalent in the family. I used to email my siblings fairly regularly with updates, but I like to talk about it, & I think I'm too 'happy' to discuss things for their sensibilities, as I quite quickly stopped getting responses from some of them. So now I wait till they ask how things are going. It's not that they don't care - they just can't handle talking about the reality of my death.
I also don't keep many friends as we move around the country alot, but I have one very dear friend who I've known since we were in our late teens/early twenties. I emailed her as well, & she came up to Darwin to spend some time with me, even though she had her own serious health problems at the time.
As for the rest of the world - they don't need to know, unless they can learn something from my journey, then, I'm glad to talk.

[sch]

Hi CaptainAustralia

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.

-sch