Surviving Cancer...and Friends

I read another post about people thinking cancer is contagious and thought about some of the people I have lost since cancer.  I think many people pull away because they feel helpless or they are afraid/worried that they will be asked to provide more emotional support then they are willing to give.

I lost several friends due to my cancer.

Friend 1.  She works at a hospital and said my cancer was liking bringing her work home with her.  It was too "medical" and when she was off work she didn't want anything to do with medical issues.

Friend 2.  Her closest friend died of cancer a few years back and my cancer reminded her of that loss and she didn't want to get hurt again so she decided it was better to sever the friendship.

Friend 3.  Our friendship consisted of lunches, dinners, movies....now that I can't do those she struggles to adjust to new options.  She works during the day in the city and so it leaves evenings and weekends only.  She is usually busy with family on weekends so that left evenings.  Due to pumps, evenings are out for me.  Too much of a bother and too inconvenient for her.  

I do understand what their reasons are and although it hurt to feel "dumped" due to cancer, I focus on the good memories rather than the reason the friendship ended.  I know that most of us on this board would view them as petty "not-really-friends" but that wouldn't be a fair statement.  We all have our limits and know what nurtures us with our friendships.  Cancer treatment and aftermath has limited my ability to nurture their needs and to meet them on equal grounds.  

I respect their ability to come to terms with THEIR emotional limits and were honest with me.  

I haven't filled the friend voids - it is very difficult to get out and meet new people.  I also hate to explain why I can't meet them for dinner/lunch or an evening movie.  I feel like it puts me in a position to have to apologize.  I don't like this feeling and so I do find myself pulling back and avoiding even my existing friends.  I hate hooking up around people...I don't mind their curiousity questions but I do mind having to explain some issues.  I hate the pity or the "hope you feel better" comments.  This is my "feel better".  There is no "feel better" cure/fix around the corner.  This is my reality and I am struggling to find acceptance - I don't need others to continue to try to keep me focused on returning to my old life.  

It is a tough balance between taking care of myself by pulling away from some people and staying connected to people who care about me.  I know everyone means well but it is sometimes not helpful to me and where I know I need to be mentally.  

Does anyone else experience similar?  How do/did you move forward?  How do you stop the "hope you get better" comments and move others into "acceptance" of your situation?  

Katherine

www.lifeaftergastrectomy.wordpress.com  

You know, Katherine, it's an interesting problem.  You probably read my story on the other post about my daughter losing a friend once her Dad was diagnosed with cancer - so unexpected!  I actually expected friends to avoid us for various reasons as I described on the other post - mostly due to their own fears of mortality, or saying the wrong thing, or whatever.  Our experience was quite the opposite and I have to say - as horrible as this is going to sound - almost as bad.

Friends and family called every day, they emailed, they sent cards, sent gifts, they even showed up at the door unannouced. We were absolutely showered with care and affection beyond our wildest dreams.  My husband had 6 chemo treatments - 2 days in a row, 3 weeks apart.  Every chemo treatment was like a party.  Sisters, nieces, nephews, brothers, and of course our own children sat with us during the day long treatments. Scrapbooks were prepared for us.  Flowers arrived weekly.  Dinner was prepared, cookies were baked and delivered.  My friends insisted they take me out for drinks, for lunch, for dinner, just for coffee, so I could "relax".  We have never had so much attention poured on us in our entire lives.  And I thought I might lose my mind.  In fact, for one lone day, I think I did.  I could not stand all of this activity, all of these people calling and showing up unannouced.  One day I totally lost it. 

Don't get me wrong.  I cannot express how much I appreciate the fact that we are so loved and we were surrounded by love from so many.  I actually believe the support my husband received contributed positively to his quick healing and relatively easy tolerance of the very difficult treatment.  But ~ with all that said ~ OMG we just needed to be left alone!!!  We came to cringe every time the phone rang.  Repeated visits from friends and relatives became a source of dread ~ not pleasure. We found ourselves secretly hoping that the phone would not ring, that no one would show up with dinner and to check on us tonight.   Writing this to you now I feel the same thing I felt then ~ the need to scream "LEAVE ME ALONE!!!!"  

So ~ the question is, what is the balance?  And why does it always seem to be an extreme?  Either people experience what you do and what others have talked about here ~ the absence of friends and support.  I wonder if anyone else experienced what we did ~ the feeling of "we love you, we SO MUCH appreciate your support, but can we please have just a minute of our normal life back?  Can we please just have a minute alone?"

I am interested to hear your thoughts ~

Much love ~ GDW

Katherine; I don't know why some people have support & others do not. When my hub was diagnosed we were pretty much alone. There were certain people in our lives who played "our" cancer card to get sympathy for themselves. I can tell some horrible stories about what was said on why my hub had a sore throat- what was supposed to be a joke- then saying something similar at our Christmas dinner table. I did not throw him out; but hub gave me the blessing to do so if he said more. He mocked my hub's "man bag" that he carried his slippers (easier on feet in rads machine) SSD cream & pain medications. I think we saw him once after that; it's been 2 years & good riddance. We've had other people who are not in our life; no clue why.

He did have a few people checking up on him but compared to how many people we know; disappointing. Also the lack of support for me. I'm disabled & can barely walk most days; this was not easy on my body & my body is starting to crash this last year from all of the stress.

I left a comment last night on your medical blog update.

Roselvr ~ that is just horrible!  Good riddance is right!  I am so sorry you and your husband had to deal with that in addition to cancer.  What is wrong with people?! 

Hello Golddustwoman,

Consider youself lucky if you and your husband have all that support. You can always ask for your time alone and I would think your family and friends would honour your request. Unfortunately, what you receive is not what others like myself get. I like the other writer do not have the rallying around and hovering. Love comes in many forms. I personally would appreciate a friend to talk to , not to judge or have to feel good by doing for me. If the person is in the moment with me. I can feel good and loved. I would love for someone to bring over a casserole or spend time with my husband who was just diagnosed with a grade 4 esophageal cancer, mets to 2 lymph nodes and the r. rib., but that is not my reality. I do not cry about what I want or need as I travel down this road... otherwise I would be crying all day. If all mankind could just show love in whatever form works for them to the sick patient and caregiver then that is as good as it gets. We should refrain from comparing each others journey in how others treat us, cause there is no formula answer.  AS I heard once, you teach others how to treat you.

God has blessed all of us. .. let's be grateful for each day.

Eternalife.

I think I had two people (maybe it was one person who offered twice) offer to bring over a dish to feed the children after 1st surgery.  No offers to shop for me, go with me to doc appointments, etc.   Exhole even had nerve to tell me I had to give him gas money if I wanted him to bring the kids to visit me in hospital.

Having said that, I do admit that I don't think I was uber supportive with my friends during challenging periods in their lives.  I am sure I offered but probably as a "let me know if I can help" rather than a genuine offer of assistance. 

I am sure I also dismissed some offers because I didn't want to look weak or appear that I was allowing cancer to weaken me.  Pride is a nasty companion.  

I also admit that I never specifically asked for help.  Looking back now, I probably should have.  Even now it is extremely hard for me to ask for help...I mean really really hard.  

If I had to do it all over again I would heed my own advice...

1.  Create a list of things for people to help with - ask them what appeals to them (time/effort)

2.  Create a schedule for assistance so that no one feels overwhelmed and to avoid all the assistance happening only in first few days

3.  Give yourself permission to ask for and receive help

4.  Never turn down an offer - accept and don't be afraid to suggest modifications to fit your needs

5.  Don't trivialize offers/needs.  

6.  Don't assume family (in my case my children) will be able to help as much as you expect...they are dealing with a lot of emotional crap and need a break/help as well.

Anyone else have other suggestions? 

Katherine, you have shared some awesome advice here.  And to all who've posted here - I hope you all know that my post was not intended to be ungrateful for the support we received.  I know how blessed we are to have had that support.  I'be thought alot about it in the last day or so and I think something Katherine said is at the root of our feeling overwhelmed by all of the support and attention.  Pride IS a nasty companion.  I am so fiercely independent that help and attention from others feels so foreign and uncomfortable to me.  We just wanted to feel NORMAL.  And having all these people hanging around isn't normal for us.  Having others help us isn't normal for us.  We  knew from the beginning that to cope with this shocking cancer diagnosis we had to try to live our lives as normally as possible.  We even said that to each other in the beginning.  And all of that attention - while sincerely appreciated - just wasn't normal and I didn't cope with it very well.

I think the fact that head/neck cancer treatment is so relatively short played into it too.  It's not like we needed support for a year - treatment itself was only 7 weeks.  Add a few on the front and back of that and you're still not even looking at 3 months.  So that's a lot of family/friend visits packed into a very short time.  And - it's easier to stay focused on supporting someone when it doesn't last that long.

All I can say is that I wish I could have been there for you - to go shopping, to cook a meal, to just listen when you needed a shoulder to cry on.  Really.  While we had too much attention, I would have been very hurt and sad if we had not had any.  Everyone needs someone to lean on in a time like that.

And Katherine, I really wish I would have been there to tell your exhole (love that word! :) what a complete exhole he is. 

Much love to all ~ GDW

Hi all, I am new here and fairly new (Oct 2011) to the cancer fight.  In reading through all the posts this one struck me especially hard, mostly because my husband and I fall into the catagory that GDW is in.

My husband and I have always been the one taking over the caseroles, cutting the lawn or moving the snow when others cant.   We have shopped for groceries, cleaned homes and taken kids for the weekend when friends have needed help, but we NEVER pictured it being us on the receiving end.

For us it is uncomfortable having people bring over meals, clean the house or just "do" for us.  That is not who we are.  You are right, pride is a nasty companion and there are days I really dispise it.  While I am very greatful for everything family and friends have done for us and it truly makes us feel loved, it also makes me feel like I am taking something from them that they may not be able to afford and for that I feel guilty.  Then I wonder if that is how they felt when we came to help them.  And it goes full circle....It makes me wonder what happened to the days of neighbor helping neighbor and how was that dealt with and is that why it is rarely seen any more?

Sorry just thinking out loud...

Hi ~

Wow I cannot tell you how much I appreciate your post.  After mine and the responses I was feeling like something must be wrong with me that I wasn't thrilled to have people ringing our phone off the hook and showing up at the door every day.  It just wasn't my normal life ~ and when cancer came along the thing we longed for most was NORMAL. 

I certainly don't have any answers.  My only advice is to do what I DIDN'T do.  Tell people you need time alone.  Don't say yes to everything you're asked to do.  If it feels selfish, do it anyway.  This is the time you need to take care of yourself. 

Much love ~ and thank you so much for your post ~ GDW

The hope you get better " comments is the best some people can do. If you can't accept this, the problem is yours and not theirs. Saying " thnk you, so do I" may be an appropriate response. Saying anything that implies" this is as good as it gets" will certainly alienate people who are feeling helpless to know what to do. The most important person your dealing with is you, so you must do what makes you comfortable. However, if you wish to retain some relationships you need to be sensitive to where others are coming from, on some level. It's not your job to make them comfortable, but just the recognition of their discomfort may help you respond in a benign manner rather thn out of anger. Some of my friends have difficulty deling with me but they will come over and cut my grass and then leave without saying hello. This is the best they can do. In the past I resented them but now able to accept their limitations with interpersonal interactions with some one who has cancer and don't make a personal issue out of it.sadly , as much as I need my grass cut I need the human interaction to be able to feel like a rel person again. Surround yourself with people who are strong enough to let you be you during this struggle and just accept the others for where they are emotionally. I hope this helps. Keith