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Just diagnosed-feelings & thoughts

Jrpalm85
Posts: 1
Joined: May 2019

Received the results of my biopsy yesterday, classical Hodgkins lymphoma, nodular sclerosis subset.

I didn’t cry, I didn’t take a seat, I just stood there, felt numb. maybe my mind is still processing the news?  Or my mind is fending off the reality of  what is to come...

im a 34 year old male who noticed a lump near my left underarm about 3 weeks ago. It was like it popped up out of no where. Dr. reccommended I keep an eye on it unless it grew in size or started to hurt. The next week it was noticeably larger. Ultra sound found 4 masses, the largest one 6.6 cm in diameter. Next was the biopsy, they went in with a needle to collect the sample. 

i go see a oncologist/ hematologists on Tuesday for further testing I’m assuming and  treatment plan Options.  

'one thing I do feel is nervousness and fear, not for what’s to come but for my mom and dad. how Will they take the eww?  How will it effect them? Should I wait till after I meet with my oncologist? I know when I tell my mom I am going to fall apart emotionally. 

They will have a thousand questions and I wont have but a few answers. 

this leads me to question why am I more concerned about others and their feelings than my own? 

 

PBL
Posts: 177
Joined: Jul 2016

Your question is a complex one!

I too was concerned with announcing my diagnosis to my sister, mother and daughter in the most appropriate, reassuring way for each person.

I would say that this must have something to do with our mental representations about cancer - the word is still very much equated to "death", even though this is not so, especially with most lymphomas (and even less so with classical Hodgkin's, which has the highest cure rate of all). After your diagnosis, it's as if you have crossed the mirror, and you are now on the inside of that universally dread word - and you know that you're as alive as before, but you fear the grief of others around you since the last thing you need is for them to break down.

There is a lot for you to process at this point, and for now you do not know much about what it means to yourself, but you can choose the most appropriate way and time to inform your family and friends - for example, after you have gathered sufficient information from your hematologist.

It is probably easier for you to remain composed if you can deliver matter-of-fact, clear information on the road ahead to your parents and friends, and assign them a part in your treatment and recovery. You may also convey to them how important it is to you that they take your news in stride, as you may need to rely on them in the next few months.

Best of luck to you.

PBL

po18guy
Posts: 973
Joined: Nov 2011

A fellow Boeing worker told me that looong ago. If it is classical Hodgkin's, it has a very high lifetime remission rate. I prefer that term, as "cure" is for lunch meats. Well, Hodgkin's veteran Max will tell you shortly, but basically you go through some treatment and feel icky for awhile. Then, if all goes well (No reason to think otherwise), you pick up the pieces and move forward, with a new appreciation for life.

What you tell your family is best done after your diagnosis is confirmed and you have studied up on the disease. Knowledge is power - not only power, but also peace of mind. As to the diagnosis, have the biopsy sample (if it is sufficient tissue) re-evaluated by a major university or research center pathology lab. Mistakes are made in diagnosing lymphoma - it is one of the most difficult to identify of all cancers. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

Without wanting to be crass, I have evolved into a belief that the reactions and ignorant views of others are their problem, not mine.  But, I am blessed with being relatively thick-skinned and not too concered with what others think.    Personally, I was always relatively upfront with having the disease, didn't conceal anything, and gave updates.  But no pathos.   I do understnat that we must regard the feelings of relatives, especially, and I used great diplomacy in speaking about it to my kids, who were in middle school at the time.  But I have never understood the reaction of "not telling people." Just me; it is incomprehensible as I see things.

You will run into a variety of classical reactions. Many of these reactions are not spoken, but you come to recognize them. Some of the ones I least liked were the (1) "How long 'till he is dead ?", as if every cancer diagnosis comes with a pre-printed death certificate. (2) The "talking about you, rather than to you," even when directly in front of you.  I have even had doctors do this, addressing my wife's questions, as if I were not there.  Fairly commonly, people we knew would walk past me and ask my wife questions about me, rather than asking me myself.  I don't care; whatever they are comfortable with.

I went on the Family Federal Leave program, as did my wife.  My employer took specific, clear actions at work  that demonstrated that he never expected me to return -- things like letting my licenses lapse, etc.  We were looking at moving, and the mortage company made my wife qualify for everything alone, on the assumption that I would die.  Lots of "not subtle" stuff.   Some of that was likely not legal, but no one cares. There is "not legal," and then there is what people actually do. Often the two don't overlap much. 

(3) The "we have good genes in my family, no cancers."  This misses the fact that many cancers, if not most, have no clear genetic etiology. And it is also a lie, since there is no such thing as a family tree "without any cancers."  (4) The "being on submarines killed him, huh ?"  This is a version of the view that the patient "did" something to cause themself to get sick.  In most cases, not so.

 

The list goes on.  Just feel good about yourself and expect abject stupidity from others, and you will get through this fine.

max

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

to be honest, that was one of the most frustrating things to deal with the first time I went through chemo. I wanted to slap everyone who asked how I was feeling, especially if they added the pity head cock. This time, I’m just quipping something like “one more day above the roses.” But really, I wanted to be treated as a person, not an illness. If I was in the office asking for the report you owed me, I wanted that report, not reminded I’m sick and you pity me.

and my father as in the very early stages of Alzheimer’s at the time (full diagnosis 2 years later), so he couldn’t remember he called the day before and asked me about everything. 

That said, for the most part, people react to how you present it. If you are crying and obviously upset, that says one thing. But if you state the facts and seem ok with it, most will follow suit. Me? I crack bad jokes to deal with stress (see above).

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

looking down at the grass! I relate to Tom Petty’s lyrics.

 

https://m.youtube.com/watch?v=nvlTJrNJ5lA

 

Tom Petty Lyrics

 

                                                             "I Won't Back Down"

Well, I won't back down
No, I won't back down
You can stand me up at the gates of hell
But I won't back down

No, I'll stand my ground
Won't be turned around
And I'll keep this world from draggin' me down
Gonna stand my ground
And I won't back down

(I won't back down) Hey, baby
There ain't no easy way out
(I won't back down) Hey, I
Will stand my ground
And I won't back down

Well, I know what's right
I got just one life
In a world that keeps on pushin' me around
But I'll stand my ground
And I won't back down
Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

Tom was always one of my favorites.  The lyrics are fitting.  Jeff Lynne (founder of ELO), George and Ringo all in the song with him. A keeper.

Another superior Petty YouTube is him playing with his Heartbreakers the song Runnin Down a Dream.  I think it was set in a concert in his native Florida.   His lead guitarist (Mike Campbell) is brilliant in that one.  Worth viewing.  It is a live performance, and Tom is in a green shirt with a leather vest on.

Tom also joined with a variety of superstars recalling George after he died.  Lynne again, George's son, Billy Preston, Bruce Hornsby, Eric Clapton, Paul McCartney.  The whole concert is precious.   In one set PRINCE outperforms everyone in a rendetion of While My Guitar Gently Weeps. While Prince was a master songwriter, he was also a master guitarist.

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

my quote was from Gaelic Storm. I’ve been looking at the number of weeks til my next set of concert tickets, and contemplating the chances I’ll end up with an infusion that week. I think I’m good if I can start next week. 

Im really love the new Rob Thomas album. A caught “one less day” on TV the morning after my biopsy, and it really struck a chord with me. 

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

but there is a lot of ageless wisdom in poetry and music. I think that is because they set a mood which we each respond to give our own particular meaning. Different people can listen to the same song and getdifferent images. This is applicable to me as a cancer patient. I find it soothing. Hope you do too even though its a bit before your time.

https://m.youtube.com/watch?v=UMVjToYOjbM

Bob Dylan, George Harrison, Jeff Lynne, Roy Orbison, Tom Petty - it just doesn't get any better than that

illead's picture
illead
Posts: 831
Joined: Aug 2012

That was awesome! I saw that rocking chair and knew right away it must be Orbison. I have been stuck all morning watching Orbison Youtubes!!.....I've got work to do!!!!!!!  Our music is timeless.

Becky

po18guy
Posts: 973
Joined: Nov 2011

"Oh, you'll be fine!"

Really? How'd they know that?

Honestly, if family is going to freak out, you can cheat and call it "Hodgkin's Disease" - omits the "C" word.

Quite a few cancer patients do not mind speaking of their illness, as it becomes pretty obvious if their hair falls out. As you learn and interact with others, and once the shock of diagnosis wears off, you will find that you have lots of support, lots of company along the way, and most likely a pretty normal life span. Maybe even longer, as you may very well decide to do all the health-related things that we have been told to do over the years.

WoodlandGnome's picture
WoodlandGnome
Posts: 19
Joined: Mar 2019

when I first was diagnosed, Hodgkin’s disease was very common. Now I notice that’s been dropped in favor of Hodgkin’s lymphoma, pretty much universally. My husband and I always referred to that period as “my issue.” As in, “back when you have you issue and we ...”

ShadyGuy's picture
ShadyGuy
Posts: 358
Joined: Jan 2017

try to talk about the good stuff. Otherwise you risk drowning in the bad stuff. I found its easiest in a one on one instead of a group setting, which can get very awkward.

Almost70now's picture
Almost70now
Posts: 5
Joined: May 2019

Welcome Jrpalm85...

Everybody reacts differently when you tell them you have cancer. I found, if I was calm, it helped them to stay calm. I was an open book with family and friends with my cancer and felt better talking about it than not. I researched everything I could get my hands on, and in doing so I could answer peoples questions knowing what I was talking about. Try to take it one day at a time until all your testing is done and a treatment protocol is in place. Easier said than done, I know, but in the long run it helps to not stress constantly. It's been close to 10 years since I was diagnosed and it's been a learning process the whole time. You will have good days and bad, but you will get through it. This group was such a life saver for me the first 5 years in. Took a rest from the group for awhile, but came back to help when I can. Take care, there's lots to learn in the months to come. Love...Sue

FNHL-stage3-grade2-typeA. (in remission) 

PeprmntPat55's picture
PeprmntPat55
Posts: 51
Joined: Aug 2016

In response to your concern for your parents and how they will take this news, take heart that you are not alone. As a single mother of adult children with children of their own, my primary concern when I first received news of possible NHL, I stayed positive when I talked with them. I continued to stay positive with them and rarely showed them my true emotions. While others may not agree with this process, it worked for me and my family and I believe helped them.  

Do you have others you are close to where you can share your fears? (here is a great spot!) That way you aren't holding it in. 

Please keep us up to date on your progress? I'll be praying for you. 

Evarista
Posts: 247
Joined: May 2017

Two things that I did:

1) In spite of how sick I was, I waited until I had a diagnosis to share my news.  With diagnosis came enough information so that I could lay out a general plan for my treatment and expectations going forward. Wasn't easy to hide the fact that I was in the hospital (live in the same town as family), but we kept it under wraps in order to minimize over-reactions. Help your mom arm herself with accurate information and that will help her from falling apart emotionally.

2) For the "world at large", I created a page at CaringBridge and shared it via email.  That way, I could update things for everyone at once.  Those who really wanted to know could look in as often as they saw fit.  When you update, the system will send alerts to those who elect to receive them. I found this incredibly helpful and took a lot of the burden of updating friends and family off my husbands shoulders.

Be well.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3181
Joined: May 2012

Three friends in recent years have used CaringBridge.  Easy to navigate.  It seems to have been a great resource for them.

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