How to best support during the worst of it all?

elliemac

I'd particularly like to hear from head/neck/throat patients and survivors.  A very close male, single,  friend of mine is just entering week 5 of radiation.  He completed the 2nd round of chemo last week and has been horribly ill round the clock, only briefly poking his head out of the bedroom to see family members who are camping out.  Although I anticipate the chemo side effects will lesson, he's got three weeks of radiation, a final chemo treatment and then the couple of weeks post treatment.  Based on my research, he's entering the worst of the worst time.

Here's my question:  What can I do to provide the best friend support possible given that things re about to get very real, very fast? 

His best friend/buddy of over 40 years moved in temporarily and is his primary caregiver, supported by his two kids in their 20's.  Over the past month of treatment, he and I have seen each other 1 -2 x/week:  gone to see a couple of movies, cuddles on the sofa to provide some physical female comfort while he rests, made tons of high calorie milkshakes/soups, taken the dogs over for a visit, watched tv.  I live just down the street so helping is convenient.  We either text or talk briefly everyday, even if it's just sending a brief joke or photo, and I send a card via mail at the end of each week to mark the treatment countdown.  BUT NOW, with his condition about to deteriorate, what can I do/say to best support him that won't be overwhelming over the next few weeks?  I can only imagine what it's like to be so sick (let alone the emotional/psychological aspects), but I think that unless you've actally lived through it, it's hard to really comprehend.

My personality is to "fix things" - this is not fixable.  Most of the ideas on-line are geared toward other types of cancer that don't apply to the specifics of throat cancer or his personal situation.  Bringing over cooked meals (he can only drink), cleaning his house (housekeeper), repotting his dying plants (gardner) won't resonate.  And most of the guidance is geared toward women.   I am going to offer to help out his buddy and offer to drive to treatments periodically.  Offer to have him join me on dog walks.  Other than doing that, I'm hoping you might share what you appreciated the most.  Even the smallest or simplest of gestures to help him cope.

Thanks to all!  Ellie Mac

debbiel0

I had a friend like you with

I had a friend like you with me every step of the way.  I have a very supportive family that took excellent care of me but I still needed my neighbour friend.

She would come over to sit with me while my husband went for groceries or to the drug store or just out to cut the lawn. Some times we would talk, if I could, other times we would listen to music. Some days she sat quietly while I drifted in and out of sleep. But the best part for me was we had a pact that we could talk about anything except my treatments and side effects. She told me about her kids, grandkids, her shopping sprees,  the yappy dog down the street. Anything that we would normally talk about before. My family kept her up to date with how I was doing so I didnt have to. 

This was very important to me.  I am sure what ever you do will be appreciated even if your friend cant express it yet.

This is an excellent place for you to ask questions and get support to help you support your friend.

Deb

 

elliemac

debbiel0 said:

I had a friend like you with

I had a friend like you with me every step of the way.  I have a very supportive family that took excellent care of me but I still needed my neighbour friend.

She would come over to sit with me while my husband went for groceries or to the drug store or just out to cut the lawn. Some times we would talk, if I could, other times we would listen to music. Some days she sat quietly while I drifted in and out of sleep. But the best part for me was we had a pact that we could talk about anything except my treatments and side effects. She told me about her kids, grandkids, her shopping sprees,  the yappy dog down the street. Anything that we would normally talk about before. My family kept her up to date with how I was doing so I didnt have to. 

This was very important to me.  I am sure what ever you do will be appreciated even if your friend cant express it yet.

This is an excellent place for you to ask questions and get support to help you support your friend.

Deb

 

Appreciated

Thanks Deb for taking the time to respond and share your experience.  Being someone who grounds a friend in ‘normalcy’ such as the pact you two had, is a great idea.  It’s easy to see why this support is valuable.... an escape from the situation and allows someone to feel more connected to a world outside of illness.  Will give it a go.  Appreciated!  Ellie Mac

yensid683

Depends....

I know, what a stupid reply but it does depend on what your friend needs.  I was in a similar situation, I was diagnosed in March of 2012 with stage IV -a base of tongue, HPV+.  Treatment was induction chemo, then concurrent chemo and radiation (weekly doses of Erbitux) and then two selective neck dissections until I was finally NED.  I've crossed the 5 year threshold and am doing well but with permanent side effects

My wife was my caregiver and like you , a 'fixer'.  She treated me more like one of our children (AKA, worked as 'mom') rather than as my wife.  It was more important to her that I do the things the doctors recommended than simply sit with me and physically and mentally 'hold my hand'.  In the early going, she was wonderfully supportive, getting me anything and everything I needed to feel better.  By the time i was into week 5 of rads, I felt I was more of an onerous task rather than the husband she wanted to spend her life with.  It colors our relationship even now.

If I had to recommend a course of action, I'd say 'be there for him'.  Yes, easier said than done, how do you 'be there' for someone?

emotional support, letting him know in words and silent actions that you're there for him, letting him rest when he needs it.  No brow beating on what he should do, encouragement on taking steps to stand up to the beast and the 'treat' that treatments are.

It's not a simple thing to do, but it can work.  Perhaps consult with his medical team, most programs include social workers and counsellors that could provide help

elliemac

yensid683 said:

Depends....

I know, what a stupid reply but it does depend on what your friend needs.  I was in a similar situation, I was diagnosed in March of 2012 with stage IV -a base of tongue, HPV+.  Treatment was induction chemo, then concurrent chemo and radiation (weekly doses of Erbitux) and then two selective neck dissections until I was finally NED.  I've crossed the 5 year threshold and am doing well but with permanent side effects

My wife was my caregiver and like you , a 'fixer'.  She treated me more like one of our children (AKA, worked as 'mom') rather than as my wife.  It was more important to her that I do the things the doctors recommended than simply sit with me and physically and mentally 'hold my hand'.  In the early going, she was wonderfully supportive, getting me anything and everything I needed to feel better.  By the time i was into week 5 of rads, I felt I was more of an onerous task rather than the husband she wanted to spend her life with.  It colors our relationship even now.

If I had to recommend a course of action, I'd say 'be there for him'.  Yes, easier said than done, how do you 'be there' for someone?

emotional support, letting him know in words and silent actions that you're there for him, letting him rest when he needs it.  No brow beating on what he should do, encouragement on taking steps to stand up to the beast and the 'treat' that treatments are.

It's not a simple thing to do, but it can work.  Perhaps consult with his medical team, most programs include social workers and counsellors that could provide help

Thanks

thanks Yensid for sharing what you lived through and lessons learned. Relationships certainly do take a toll in such extreme circumstances and role definition/behavior is very difficult to figure out.  Yes, ‘bring there’ for someone is so hard to define and you, thankfully, provided a meaningful description, one that makes sense.  Ultimately, it is the emotional support that may be most lacking and needed, particularly now that the going is getting really tough.  Wonderful guidance, taken to heart.  Much appreciated!

johnsonbl

Say this...

 "what can I do/say to best support you that won't be overwhelming over the next few weeks?  I can only imagine what it's like to be so sick (let alone the emotional/psychological aspects), but I think that unless you've actally lived through it, it's hard to really comprehend."

:-)

Sprint Car Dude

Personally.

I just wanted to be left alone from week 5 until about week 9. With that said, It was such a great comfort knowing help was just on the other side of the bedroom door. it really gave me a piece of mind when someone would just ask If I needed anything every 3-4 hours. I was a miserable person for a few weeks. I told everyone that I was. Again just knowing someone was in the house with me was a great comfort, even if I couldn't talk or didn't really want to talk.  Just be a friend and listen. And try your best not to take anything personally because we can sure be short tempered and cranky during all this. The stress of being sick, not in control, personal issues and financial concerns are just always there in the back ground that no one sees. Good Luck. Your friend will appreciate all that you have done for him for the rest of his life. 

elliemac

johnsonbl said:

Say this...

 "what can I do/say to best support you that won't be overwhelming over the next few weeks?  I can only imagine what it's like to be so sick (let alone the emotional/psychological aspects), but I think that unless you've actally lived through it, it's hard to really comprehend."

:-)

On Point

Love it!  Yes, asking directly is definitely the best approach.  Apparently, the question has already revealed itself!  Great insight.  I will pack the question in my pocket and ask .  Thanks Johnson!

elliemac

Sprint Car Dude said:

Personally.

I just wanted to be left alone from week 5 until about week 9. With that said, It was such a great comfort knowing help was just on the other side of the bedroom door. it really gave me a piece of mind when someone would just ask If I needed anything every 3-4 hours. I was a miserable person for a few weeks. I told everyone that I was. Again just knowing someone was in the house with me was a great comfort, even if I couldn't talk or didn't really want to talk.  Just be a friend and listen. And try your best not to take anything personally because we can sure be short tempered and cranky during all this. The stress of being sick, not in control, personal issues and financial concerns are just always there in the back ground that no one sees. Good Luck. Your friend will appreciate all that you have done for him for the rest of his life. 

Thanks

Sprint Car Dude... Sounds like you toughed it out and emerged out the other side, as strong as possible.  You insighfully reference not taking behavior during this hellish time personally and boy, are you spot on.  Although there have been a few apologies (always welcomed! and very thoughtful of him to be cognizant of shortness or tone of voice), my feelings were getting lightly bruised.  But, with tough skin and empathy because after all, this is a fight for life, it’s not too long before things quickly fall into perspective. The hidden stressors often go forgotten - thanks for being them to the surface.  Continue to check in regularly, listen, and freely support without judgement - check, check and check.  Will try my best!  Appreciated.  PS.  I think he’s similar to you ... ‘let me give it a go alone, hunker down and barrel through the worst.’  Thanks for sharing.

SuzJ

I found

I hated the words "I'm sorry"

 

What can I do, are better, and just being there, is best.

 

We don't know what we want, sounds nuts I know, I found flowers that a friend sent, meant an awful lot - because they said "I care" and "Im thinking about you" For me, just one wild flower in a small vase would have worked.

Don't call a lot, text - because, we can answer a text when we feel human. A call puts us on the spot.

 

Just say "I'm here, no matter what you need, whenever you need"

 

There, now I've made myself cry...

elliemac

SuzJ said:

I found

I hated the words "I'm sorry"

 

What can I do, are better, and just being there, is best.

 

We don't know what we want, sounds nuts I know, I found flowers that a friend sent, meant an awful lot - because they said "I care" and "Im thinking about you" For me, just one wild flower in a small vase would have worked.

Don't call a lot, text - because, we can answer a text when we feel human. A call puts us on the spot.

 

Just say "I'm here, no matter what you need, whenever you need"

 

There, now I've made myself cry...

Vulnerability

Thanks Suz for being so thoughtful in your response that you took yourself back to relive some of those memories.  You are courageous in your vulnerability.  Sometimes when we acknowledge the beauty of love and caring in our lives, that we are never alone as we feel, and that we actually need other people .... it’s seeing that vulnerability in ourselves and the gift of love in others that makes us cry the most.  I’m adding your exact message to my next text to him ‘I’m here,  No matter what you need, whenever you need it.’  true and beautiful.

elliemac

Please continue to Share

Hi Everyone!  Whether you have additional ideas or just want to agree with what others have already suggested ... please keep your experiences coming!  Reading through these (ive read them all dozens of times) is giving me (and I hope you) a reminder about how  giving love/consideration/support freely - an act of the heart - has the power to not only heal, but to connect us deeply with each other when we are most in need of it..  Your stories of who got you through (is getting you through) and how are very inspirational!  Kudos to all of you and the special people you tell the stories about!

johnsonbl

elliemac said:

On Point

Love it!  Yes, asking directly is definitely the best approach.  Apparently, the question has already revealed itself!  Great insight.  I will pack the question in my pocket and ask .  Thanks Johnson!

The fact is...

You've already done what you need to do.  You sound like you are super invested and want your friend to get better.  That's all anyone can really ask.  But everyone is different.  My wife wanted to wait on me and such and I wanted to not be waited on...but to keep busy and load the dishwasher because I was going to maintain a normal life through it all.  Others want to hole up and not be with people.  It just depends on the person.

Your friend is in good hands!  Brandon

OKCnative

Just did my 6 month post

Just did my 6 month post treatment checkup.

I had stage three cancer SCC at the base of tongue with a fairly large tumor. Did 35 rounds of radiation to three locations of my head and Cisplatin chemo. All for 7 weeks.

During that time my wife did what she's always done, stayed by my side as my best friend. We talked very litttle. Just having someone there was usually enough.

We'd mostly watch TV together or she'd sit next to me while I slept. I drove myself to radiation and to work most days, but it was grueling. She was very patient but didn't treat me like an invalid. She'd bark orders at me when needed; "drink your calories" "Walk around a bit" "Do you throat excercises."

But mostly we'd just talk about the stuff we were going to do when it was over. 

It's not even a year since I was diagnosed and I'm 100% back to normal, minus a bit of saliva.

It's a tough road but it's very doable.

Just be there, but don't be a crutch, be a ladder!

elliemac

OKCnative said:

Just did my 6 month post

Just did my 6 month post treatment checkup.

I had stage three cancer SCC at the base of tongue with a fairly large tumor. Did 35 rounds of radiation to three locations of my head and Cisplatin chemo. All for 7 weeks.

During that time my wife did what she's always done, stayed by my side as my best friend. We talked very litttle. Just having someone there was usually enough.

We'd mostly watch TV together or she'd sit next to me while I slept. I drove myself to radiation and to work most days, but it was grueling. She was very patient but didn't treat me like an invalid. She'd bark orders at me when needed; "drink your calories" "Walk around a bit" "Do you throat excercises."

But mostly we'd just talk about the stuff we were going to do when it was over. 

It's not even a year since I was diagnosed and I'm 100% back to normal, minus a bit of saliva.

It's a tough road but it's very doable.

Just be there, but don't be a crutch, be a ladder!

Quote of the Year

OKCnative .... that quote ‘don’t be a crutch, be a ladder’ is going on my wall!  It seems to me, based on what you shared, that there are different ’riles’ to be played.  some are based on function and relationship in life.  For example:  caregiver may be different than emotional supporter or humorist and wife is different than friend or daughter or mother.  someone can wear more than one hat, but all roles are needed in recovery.  And I guess it depends on the nature of the relationship.  The point being is that one person can not be, nor should be, all roles.  Sounds as if you and your wife have a beautiful, loving relationship.  Congrats on a wise choice!

SuzJ

You are doing it.

Most times, I just pushed thru, but some days I'd turn to my son, and say "Can I have a hug?"

 

I have found cancer treatment, is a bit like childbirth. You don't remember the worst of it after, or your memory dulls with time. I KNOW it was bad, I KNOW I struggled, I KNOW my Superwoman armor got dented, but.. its a hazy memory

Be there, be the wordless hugs, be the silent understanding, ask us the questions. Just - be there.