Dealing with recurrence

GingerMay

How do you deal when a loved one's cancer has a recurrence?  

My husband went for a scan as part of the follow-up plan.  I knew he was due, but I didn't want to smother him.  He came home from work yesterday and said he had his followup.  He said he didn't tell me because he didn't want me to worry, but he was subdued and I knew there was something.  He said there was a suspicious spot near where the original tumor was removed.  His original diagnosis was last year and was treated with surgery and chemo.  He said his doctor mentioned the possibility of only needing to do chemo this time.  Huh? I'm trying to catch up with this.  

For a couple months, life almost seemed normal.  I say "almost" because really nothing has been normal since he was diagnosed.  When we met with his doctor after his original surgery, I prepared a list of questions.  I took notes. My husband's sister is an oncologist and had sent him an email with 4 questions to ask.  My husband printed that and referred only to his sister's questions.  I looked at her list and saw that I had more questions than she provided, and my questions covered all of hers.  One of his sister's questions was "When can I return to work"?  That nugget of wisdom is among 3 other questions that Stephen held onto during that appointment.  As we left the doctor's office my husband gathered the paperwork on the table and handed my list of questions and all my notes back to me, but put his sister's note in his pocket.  So I guess if I'm being totally honest, I was hurt.  He seemed dismissive of me.  

Last night he said "Did you know my cancer has a 60% chance of coming back"? If he bothered to look at any of the notes I took 6 months ago, he would have known that.  So of course I knew, but I just shrugged and said yes.  I told him I was proud of him for staying on top of it, and I thought he was brave.  That's all true, but I didn't tell him what I really think of other dynamics in all of this.  

I do not have a support system around me.  I have people who love me, but mostly they say and do all the wrong things.  My parents are getting older and Stephen's illness rattles them and that becomes one more burden I don't need.  

I'm finding that I really crave being outside - alone.  It is freezing cold here, but I put on a heavy jacket and sit outside with a cup of coffee and just stare at the stillness of the bare trees.  It gives me peace.  What else do we do?  I pray.  I meditate.  I workout.  I eat healthy.  I  guess the best we can do is get aligned with doctors we are comfortable with, accept what is, and pray for courage?   

I cried in the car this morning on the way into work which helps, but makes a mess.  I feel helpless and small. I know cancer is unpredictable and can evade the best treatments.  

Anyway, thanks to anyone who reads this and blessings to you and your loved ones.    

Ladylacy

Cancer

I think when we or someone we love are diagnosed with cancer we always worry about a reoccurrence.  My sister is a 14 year survivor of triple negative breast cancer and she still worries.  Our youngest son is an 8 year survivor of kidney cancer and ever little thing scares him and his wife.  One of my Aunt's fought esophageal cancer but lost her battle it kept reoccurring and she got tired at the end and gave up.  My husband fought laryngeal cancer, beat it but then a year later developed a second primary in basically the same spot.  Due to the previous radiation and surgery, surgery was ruled out.  Because the tumor was small and no spread the doctor thought radiation and chemo would take care of it.  Well it didn't and it came back and then spread to his lungs.  He lost his battle exactly 5 years to the day he was diagnosed.

It was hard for both of us and when he declined further treatment, it was worse for me.  But it was his choice not mine or anyone else.  My opinion is that those who haven't been thru it, don't understand what the patient and caregiver goes thru.  As caregivers we go thru a lot and you have to take care of yourself too because you are just as important.

I have read on this site those whose spouses were hard to deal with and could be mean.  I can honestly say mine wasn't like that at all.  Yes he was depressed, who wouldn't be, but he was willing to take medication to help.  No he wouldn't discuss what he felt with me or our grown children and we didn't press him.  Caregivers get depressed too because we are the ones dealing with the patient and this horrible disease 24/7 plus everything else.  Get something for your nerves, talk to someone, find support groups and don't be afraid to ask for help.  You are important in this battle too so take care of yourself too.

Wishing you peace and comfort

GingerMay

Ladylacy said:

Cancer

I think when we or someone we love are diagnosed with cancer we always worry about a reoccurrence.  My sister is a 14 year survivor of triple negative breast cancer and she still worries.  Our youngest son is an 8 year survivor of kidney cancer and ever little thing scares him and his wife.  One of my Aunt's fought esophageal cancer but lost her battle it kept reoccurring and she got tired at the end and gave up.  My husband fought laryngeal cancer, beat it but then a year later developed a second primary in basically the same spot.  Due to the previous radiation and surgery, surgery was ruled out.  Because the tumor was small and no spread the doctor thought radiation and chemo would take care of it.  Well it didn't and it came back and then spread to his lungs.  He lost his battle exactly 5 years to the day he was diagnosed.

It was hard for both of us and when he declined further treatment, it was worse for me.  But it was his choice not mine or anyone else.  My opinion is that those who haven't been thru it, don't understand what the patient and caregiver goes thru.  As caregivers we go thru a lot and you have to take care of yourself too because you are just as important.

I have read on this site those whose spouses were hard to deal with and could be mean.  I can honestly say mine wasn't like that at all.  Yes he was depressed, who wouldn't be, but he was willing to take medication to help.  No he wouldn't discuss what he felt with me or our grown children and we didn't press him.  Caregivers get depressed too because we are the ones dealing with the patient and this horrible disease 24/7 plus everything else.  Get something for your nerves, talk to someone, find support groups and don't be afraid to ask for help.  You are important in this battle too so take care of yourself too.

Wishing you peace and comfort

Thank you

Thank you Ladylacy for taking the time to reply and for sharing your experiences.  I'm sorry for those you have lost, but happy to know of those who are surviving.  Bless you. 

wolfen

Ginger

First, I want to tell you how sorry I am that once again cancer has reared its' ugly head.

During my daughter's 6 year battle with the beast, she had an eighteem month period when she became NED. When cancer returned, it was with a vengeance. It was colon cancer that gradually spread to her liver, lungs, and pancreas. Because she lived 2000 miles from us, we could only visit sporadically. I think my way of dealing with it was to simply think that she just could not die. It was just not possible. I could not see her day to day and understand just how sick she was, and she never told me. I was avoiding reality. Not a good thing. My husband's cancer was right there in my face and could not be unseen. Yet, I still avoided reality. How could this strong man I had llived with for 40+ years ever succumb to cancer. But he did and so did she. Avoiding reality is a way to cope for awhile, but I don't recommend it. I was never prepared for either of their deaths and I still have a very hard time accepting that they are gone. I don't think there is an easy way to deal with cancer, especially when we are helpless. A friend on another forum posted this and for me it was perfect. "If you want G#D to have a good laugh, just tell him your plans."

GingerMay

wolfen said:

Ginger

First, I want to tell you how sorry I am that once again cancer has reared its' ugly head.

During my daughter's 6 year battle with the beast, she had an eighteem month period when she became NED. When cancer returned, it was with a vengeance. It was colon cancer that gradually spread to her liver, lungs, and pancreas. Because she lived 2000 miles from us, we could only visit sporadically. I think my way of dealing with it was to simply think that she just could not die. It was just not possible. I could not see her day to day and understand just how sick she was, and she never told me. I was avoiding reality. Not a good thing. My husband's cancer was right there in my face and could not be unseen. Yet, I still avoided reality. How could this strong man I had llived with for 40+ years ever succumb to cancer. But he did and so did she. Avoiding reality is a way to cope for awhile, but I don't recommend it. I was never prepared for either of their deaths and I still have a very hard time accepting that they are gone. I don't think there is an easy way to deal with cancer, especially when we are helpless. A friend on another forum posted this and for me it was perfect. "If you want G#D to have a good laugh, just tell him your plans."

Thank you, maybe not one size fits all for coping

Maybe I'm looking for some answer, but reality is there just isn't one.  I feel like I'm walking a line between wanting to be positive, preparing for the worst, anticipating grief, figuring out how to have a life through bouts of recurrences.  I guess we all find our way.  Your quote rings true to me in that there is a higher power in spite of all our efforts.  Sometimes I just wonder if the rest of our lives will be a cruel routine until this finally and slowly takes him.  I just don't know.  Making peace with that is a challenge.     

I am sorry for your loss of loved ones.  Thank you for your reply.  It helps to at lease know others understand.     

MyNewNormal

Wolfen's quote

Wolfen 

I like your quote about making God laugh. It is just like the quote from one of the Beatle's songs.

"Life is what happens when you are busy making other plans"

I know all our big plans we had for when we retired are gone, and now I have to face My New Normal. and I hate it, but I am adjusting as much as I can. We got his diagnosis on the 36 anniversary of our first date. That really sucked. Since that day, as you all know, life will never be the same.

 

jorola

My husband shouldn't have beaten it the first time...

And although I try not to think of it, it is always in the back of my mind, not if, but when will it return. Lung cancer always does. He was stage 3b. When it comes back, it will take him from me. I am not ready for that. I do not think I will ever be. So I try to hang on to every moment I have with him; as if it were the last. He is my lover, my best friend, my soul mate. I read your story and know it will one day be mine and it scares me - there are no words to describe how bad. I am so sorry about the recurrence. I wish I had comforting words but I lack them, I am sorry.

GingerMay

jorola said:

My husband shouldn't have beaten it the first time...

And although I try not to think of it, it is always in the back of my mind, not if, but when will it return. Lung cancer always does. He was stage 3b. When it comes back, it will take him from me. I am not ready for that. I do not think I will ever be. So I try to hang on to every moment I have with him; as if it were the last. He is my lover, my best friend, my soul mate. I read your story and know it will one day be mine and it scares me - there are no words to describe how bad. I am so sorry about the recurrence. I wish I had comforting words but I lack them, I am sorry.

Just being heard

Thanks MyNewNormal & Jorola.  Just your reply helps.  I don't know why, but I feel so invisible. I'm scared and I feel alone.  This just seems so cruel.  So thanks for taking the time to reply.  Bless you.           

Hodgkinninja

hi...I'm so sorry for your

hi...I'm so sorry for your situation....I will say a prayer tonight for him. Peace and strength.

 

GingerMay

Hodgkinninja said:

hi...I'm so sorry for your

hi...I'm so sorry for your situation....I will say a prayer tonight for him. Peace and strength.

 

Peace & strength

Sometimes I think to myself I can't do this. Then realize I have to.  

I don't want to fall apart.  As time goes on, I assume I'll find my footing.  Peace & strength are good things to pray for.  The same to you.  Thank you.      

jorola

GingerMay said:

Peace & strength

Sometimes I think to myself I can't do this. Then realize I have to.  

I don't want to fall apart.  As time goes on, I assume I'll find my footing.  Peace & strength are good things to pray for.  The same to you.  Thank you.      

Right back at you...

And to all of us.

GingerMay

jorola said:

Right back at you...

And to all of us.

To all of us

Agree peace & strength to all of us.  Also, such a nice picture of the two of you .       

JerzyGrrl

Dealing with stuff...

"I'm finding that I really crave being outside - alone.  It is freezing cold here, but I put on a heavy jacket and sit outside with a cup of coffee and just stare at the stillness of the bare trees.  It gives me peace.  What else do we do?  I pray.  I meditate.  I workout.  I eat healthy.  I  guess the best we can do is get aligned with doctors we are comfortable with, accept what is, and pray for courage?"

You are practicing some great self-care here.  I hope you keep it up.  You're a role model for others. How? It's too easy to say, "Oh, but it's cold out," and then just hide under the covers (which is warm, but not particularly peaceful). 

"I cried in the car this morning on the way into work which helps, but makes a mess.  I feel helpless and small. I know cancer is unpredictable and can evade the best treatments."  

Quite a while ago when accompanying others through some difficult times, I asked a friend how she managed. "I wear mascara that's not waterproof so I don't allow myself to cry," she told me. "Wow! I DON'T wear mascara so I CAN cry," I told her.  Whatever works, I guess.  If the "mess" is your makeup, either get the waterproof kind or forget wearing it -- one less thing to have to hassle with. Oh, and definitely invest in the good kind of facial tissues.  I like Puffs -- they're easier on my nose and eyes than Kleenex.  Not to mention, if it's miserably cold out, crying in the car is way better than outside in the cold.  Chapped cheeks and eyes are no fun. 

Keep us posted --