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Sweetheart Diagnosed; Wants to "Go It Alone"

bellasailor
Posts: 4
Joined: May 2013

Hi thanks for this wonderful resource. My boyfriend of 5 years, 53 years old, was diagnosed with "throat cancer", perhaps stage 1/2 in the past month. Stage 1 for size of tumor at base of tongue, potentially stage 2 because a few lymph nodes lit up on PET Scan. He is not forthcoming with any more details and previously stated he prefers privacy. He had initial surgery 9 days ago and best I can tell had a selective neck dissection (57 stitches, lateral scar from ear to ear on neck), almost 10 hour surgery. Tracheotomy already removed, feeding tube in nose. Discharged from hospital day 6, off pain meds except to sleep. He has his dr appt tomorrow to get details of surgery, status and treatment plan. He is "low-information" versus me who is "hi-information". I know he is scared but won't admit, and wants "to protect me" which he thinks he is doing by pushing me away. Of course that is more hurtful to me than knowing and holding his hand.

Does anyone have any suggestions to help him realize those that care about him genuinely want to be there for him?  How can I be supportive if I am pushed away? This dynamic is unnecessary stress to an already bum situation. Any resources I can tap into to help him and I cope? Thank you!

cureitall66's picture
cureitall66
Posts: 879
Joined: Aug 2012

I think as time goes into the tx he will find "going it alone" won't work for him. He will want and need you by his side whether he admits it or not. I don't think it's uncommon to "push" away at first. The thoughts scare him enough as it is, he may think it will scare you just as bad.

I am a caregiver to a loved one...male, age 52, Dx: SCC BOT(Base of Tongue) with 2 lymph nodes involved (all same side) Stage IV, HPV16+ in Aug 2012 Tx: Chemo (Carboplatin & Paclitaxel) & Radiation all for 7 weeks (no surgery). Tx ended end of November and clean scan in February. Upon diagnosis he was distant but I think as time went he came around and realized he needed me and others to get him through this emotional, physical journey.

If you stay on this forum, you will find many long time survivors (5,10, 20 yrs) that have chose to stick around and many of us newbies that can offer plenty of help and advice as you go along. You many find yourself popping in and out of the forum to get some help with a problem he is encountering. I would encourage you to stick it out here for help and to also read the Superthread at the very top of all the posts on this forum. It has many subjects that you can read through to help get you prepared. I will also caution you to watch how much internet searching you may want to do as alot of the information is outdated or just simply to much statistics.

He will come around....just give him his space right now. He's trying to figure this all out himself.  

~C

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

bellasailor,

Welcome to the H&N forum, so sorry your boyfriend got tagged. I was 55 when I was chosen for stage IVa, scc, bot, 1 lymph node,  hpv+ (surgery, rads , Erbitux).

I understand his desire to maintain his privacy, I wanted to also.  My wife found this site in December 2011, prior to me starting treatment, so she had a good month to fill me in on the pros and cons of H&N cancer.  I fully give credit to the H&N members for all the useful knowledge passed along.  He doesn’t have to (physically) participate to gather information or ask questions.  I laid back in my recliner and peppered my wife with questions or listened intently.  It was like an “Oral Superthread” (Note to self that is a good idea).

Just let him know that you can front for him here (it is done all the time).  He is going to be kept busy trying to figure things out, not only does he have to fight cancer he has to spend 24/7 with the side effects and they can be a bit _ _. Remember, you are in this for all the marbles, give yourself as much of an advantage as possible.

We are behind you 100%.

Matt

michdjp's picture
michdjp
Posts: 200
Joined: Sep 2011

Matt you give great advice and you are hilarious at the same time. Whenever I read your posts I either laugh out loud or sigh quietly knowing you do understand.  I'm glad your wife found the site!

 

bellasailor,

i agree with all of the above comments, your boyfriend may just be in a denial state.  I remember when we were waiting for my dads scan results before we knew anything, he told my mom, dont worry im superman!  The folks on this site will get you through some rough spots and provide so much information my advice would be to stay close and ask a ton of questions. 

Best of luck

michelle

bellasailor
Posts: 4
Joined: May 2013

I like it; from what I have read there is much more truth here than on the internet. So Thank you Matt! I suppose it takes more time to figure out this new challenge and journey...but info is important and I am desiring to debunk rumors and squash fears as much as I am able. (Knowledge is power) He says he will call me after he gets his low-down from the surgeon tomorrow. He is a fighter and is shell-shocked. Since he uses his voice for a living the swollen tongue thing is mighty inconvenient...could take 6 weeks to reduce to normal? Also a nurse casually dropped the bomb "they took a lot out" but no one can quantify or clarify. So it is the not knowing that stinks. I suppose all will be revealed tomorrow, or at least as much as the Good Lord thinks we can handle?!?

Thanks for the support and wisdom. I will be around.

Deborah

hwt's picture
hwt
Posts: 2008
Joined: Jun 2012

It's always a good idea to have an extra set of ears at doctor appts. There is allot to take in. Don't hesitate to ask any questions. Each person is different with the side effects they experience but there are usually several who have been thru the same situation and can offer support. 

Prayers for your boyfriend and for you as caregiver. If like most, you will come out of this on the backside with a stronger relationship than you could have imagined.

Candi

bellasailor
Posts: 4
Joined: May 2013

Hi Candi. Thanks for responding. Most unfortunately I was not allowed to join my boyfriend with this critical doctor appointment. He didn't want me go with him. Why? Fear of what he might hear, but I think he still thinks he can protect me and he doesn't want to be a bother. Humph. Too late for that!

Boyfriend did text me some info: 60+ lymph nodes removed from both sides, 2 cancers found on removed nodes on one side and surgery did not get all of tumor on tongue. Chemo and Radiation to start in 3-4 weeks. That is all I got. Nothing specific on prognosis, treatment plan, what to expect, etc etc. He seems to either be low information or that is all he wants to share. I sense he may have been restaged as a result of this but we cannot talk about that, or anything for that matter. He gets frustrated with me asking questions. I will see him in a few hours later this afternoon...

I did reach out to the support group social work leader for some suggestions on how to crack this communication impasse. Any assistance from anyone reading would be GREATLY appreciated. I have my hands full with trying to cope myself, not to mention him, his daughter, rest of family and friends who are also out of the loop!!!

 

Deborah

fishmanpa's picture
fishmanpa
Posts: 1131
Joined: Jan 2013

Hi Deborah,

I know I had feelings of guilt about my diagnosis and putting my caregiver Marcia as well as my family and friends through this ordeal. I didn't want for them to see me suffer. It sounds as if your boyfriend may be experiencing similar feelings. Yet he shared a lot concerning the doctors findings so I may be totally off.

I can tell you that the plethora of feelings and emotions I experienced from the time I was told "You have cancer" until this very day have been varied and extreme. I'm a type "A" personality and the loss of control over my life was VERY difficult to handle. The subsequent months after diagnosis made it all the more difficult as I deteriorated from the side effects. Mood changes and reactions to drugs made me more than difficult to handle for sure! It was very, very difficult on Marcia.

While there are many caregivers that participate in this forum, there is also a caregivers forum on the site that I would pose your question to as well. Perhaps you will gain some additional insight.

The only other thing I will suggest and this just comes from my gut as it's how I were in your shoes...

This is your boyfriend for over 5 years! It's obvious you love him. Sit the man down, get up in his face and tell him flat out how it's going to be! That you're going to be there with him throughout this journey and nothing he says or does is going to change it so he might as well get used to it! That you are to be included in the Dr's appointments and will do whatever you can to help him through this.

I will tell you Deborah, it truly is as difficult for the caregiver as it is for the patient. This will test your constitution more than anything has before.

Best wishes, positive thoughts and prayers

"T"

 

bellasailor
Posts: 4
Joined: May 2013

Thanks "T". I have been told that by a few close friends (to get in his face). I appreciate hearing from you, a survivor. I suppose we feed on each other, not wanting to upset each other so we walk eggshells. Well, I suppose the diagnosis has upset us both sufficently so I am looking for ways to tame this bull that came into our lives uninvited. Your candid reply moved me; I will see him in a few hours. Blessings and thanks again.

fontina15's picture
fontina15
Posts: 1
Joined: Feb 2014

Deborah,

I don't know if you still visit the site or not, or whether you'll ever receive this reply.  However, on the off chance that you do, I just want to thank you for expressing the exact sentiments I've felt in dealing with my boyfriend's diagnosis.  Unlikeyour situation, however, he and I have a rather new relationship - he was diagnosed 2 months after we began dating.  We are now 5 months in, and although we both have maintained that we are in it, eyes wide open, for the long haul, this has been quite a difficult journey.  He, too, has behaved in ways which seem as if he's trying to either push me away or protect me. And, exactly like you, I find that to be very hurtful, because he won't tell me much, and because I can't hold his hand (our relationship was already difficult because we live 2.5 hours apart!).

I'm pretty sure I won't be a regular poster here.  However, I have found such a wealth of comfort in just reading the posts of so many others, and the replies of other caregivers and survivors.  I feel like a burden has already been lifted off of me, just knowing that I'm not alone.  Even in the newness of this relationship, I know this is a rare man worth knowing and worth fighting for, so where others might turn heel and run, I am pulling up my chair and digging my heels in.  That being said, I know I'll need the support of many others to see us both through this journey.

So, thank you, Deborah, and everyone else who have shared your issues and advice; you all are really making a difference.

 

D

 

 

 

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

D,

Welcome to the H&N forum, so sorry you find yourself here.

You are correct, Deborah may not read your post (she hasn’t log on since last July).  Caregivers are a special group here so know you are not alone.  The start of cancer diagnosis is a crazy place to be, for all involved.  Generally, not until you have a plan does the fog start to clear.

Feel free to start a new thread and allow others to help and to listen.  All of us together, we are a good friend with no subject off limits (yikes).

Matt

wmc's picture
wmc
Posts: 609
Joined: Jan 2014

Welcome both Deborah and "D" to both of you ladys, and like everyone else, Sorry you need to be here.

My thought is they are very scaired as I was, and trying to protect you from this. When someone gets sick with somthing this major you lose people you thought were friends. Don't blame them they just can't deal with, or handle this. They just kinda just shy away. So you want to shield the one's you love, but don't realise they are the ones that will always be their. My family was great, but I could understand the few ones you loose. I had Larnyx cancer and lost my voice and breath through my neck, T3 N0 M0, but before the surgery I was told it was T4, N2 M0

. Yep I was cut from ear to ear too. You think some just can't look at you and others will stare, but that is just not the case. Everyone has been so good to me when I go to stores or shopping.  I'm alive and only three to four people thought I would live. I had great support from friends and family is how I made it through this, even the ones that thought I wouldn't. But I had thoughts of loosing them because how I now look with the hole in my neck.  Your friends will always be their, that why the're friends in the first place.

I think your guys  will come around and will need you both more then you, or they, will ever know so be ready. 

This is a great place for support, and some great advice and first hand knowledge. They have all helped me so much.

Bill

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

There have been a few in similar situations as you over the years..., it's never easy.

So to add my perspective, which is different than some others approach..., LOL..., and leave you totally conflicted.

 

Bottom line, you can't make someone accept your help if they don't want it... Actually it might even cause more of a strain on your relationship if they feel trapped, cornered, or smothered...

I can only offer that you let him know you are there whenever he needs you or your help, and keep the relationship as unpressured and normal as possible, or he wants.

I know this is tough, but it's the best scenario for him, and one that will allow him to decide just how much to let you in...

It has to be his choice..

Thoughts & Prayers,

John

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