Coping with fading support

lindaa

Hi Dee, I too have a special husband who just does everything, and I worry about him burning out.  I wish I could come up with a special gift for him, but I am blank on ideas.

As for help, I had tons of offers for help from day one but I didn't need it because I was quite active and mobile.  I thought that was frustrating.  I kept reminding everyone that effects are cumulative and I might need their help down the road.  So here it is down the road and iv'e had a couple of infections that have slowed me down greatly.  I post this from  brigam womens in boston as I try to get home for Christmas.  My port got infected and I couldn't move my arm so they had to take it out.  I got my DD A/C chemo last night in hospital and hopefully will go home later today or tomorrow.  so my mom, daughter, and hubby have been in high gear cleaning and finishing last details for christmas eve as  always have ppl over.  We were on the edge of cancelling but I think that would just make things worse and more depressing.  I do know blood family responds much better to help than friends.

As for saying anything, my post is a liitle late to help, but what you want to say to your friends is fine, and good, open communication is important, but your tone is defensive when you add 'thanks for asking'.  that could put a downer over an already down situation.  always approach with kindness and love.  Rather than fighting words, something like 'I just wanted you to know because your support means so much to me.  I was afraid to go alone and I don't want to go alone again.'   also, if you do have family near by please  include them.  My mom only seems to listen to about half of what I say and sometimes does what she wants and not what I want - but in the end its all good.  Having cancer really pushes the little meaningless things out and I try to focus on only the good.  god bless and have a wonderful holiday!!! 

R_healing

I am so glad to find this thread and know that I am not the only one who feels this way.  Like many, my friends were so supportive in the first few weeks but as time has gone on folks are wanning.  I used to get texts after every doc appt, chemo, etc. and now it is getting sparse.  And, those who I thought were "good" friends - who my DH and I had been there for in the past during their tough times - pretty much fell off the map when they heard I had cancer.  I am trying to look at the positive side, be grateful for all the poeple who HAVE supported me (including new friends) but it still hurts when people bail.

scrap2book

Had lumpectomy and radatiion in August/Sept 09, but when the C spread to my back and hip, and I did chemo, never hear from anyone.  Still waiting for those meals that people were going to bring over and the phone calls or e-mails from relatives that live 15 miles away!  My dad did nothing but bring flowers from Walmart (not that there's anything wrong with that!), so I could get up again, after I had just sat down - Duh? - the flowers needed a vase!!!  Oh and while I was up, could I get him some coffee.  Now he calls every few days, but doesn't even listen to what I'm saying.  Thanks, feel much better now!

travelgal6979

I'm so glad to have found this page cause I have felt exactly this way for a while.  The rational part of me knew that people would start to move on and "get on" with their lives after my exchange surgery from my BMX; but I still felt kind of blue since I knew it really wasn't over cause there were still more surgeries.  At work, it felt like it was over the minute I returned from my BMX even though I still had to get fills and exchange surgery.  Then a week after I returned, the owner of my office and his wife went thru a terrible separation in their marriage (we worked out of their house) and the wife would corner me when I came into the house and would talk to me endlessly about the divorce.  It was so stressful...I barely had a moment to think about my own situation.  It was like a soap opera.  Then last month, my sister was diagnosed with BC and just had a lumpectomy.  Please don't misunderstand, I feel terrible for her, but it has brought all the BC feelings back to the surface and I'm not even finished with my treatment.  I love my sister dearly but she keeps describing what she's going thru as though it's 100x's worse than what I went thru, like it's a competition.  I'm biting my tongue so much that it's practically swollen.  :-)  I feel bad for her and what she's going thru but I don't want to have a compete on who had it worse and I feel like that is what she's doing.  I was doing great up until last month and now I'm just so exhausted...Thanks for listening everyone. 

jan508

Diane:
You certainly have your hands full!

I agree that friends and family have moved on. I didn't need chemo or radiation (just Tamoxifen) and once that was said it was like....ok, she's fine, let's go!

I'm in the middle of my recon and I get no further calls from family asking how I am.  I have ONE great friend who I talk to everyday on the phone who ALWAYS asks.  And I know she really does care!

In the meantime, I'm sitting here praying that I don't have a recurrence.  They don't understand it can come back!!

Don't let your sister get to you, I'm sure she's terrified too. She also is a newbie and needs to go through the process just like we all did.

It will get better, promise!

Jan

annettek

Diane- it is a very weird journey we are on. No doubt about it, at first everyone is in panic mode and then as we "resume" life as best we can while undergoing things we never imagined it seems we are in a limbo of sorts...I am lucky as jan said, even one good friend makes the difference and it is weird, since I didn't allow friends before since I was too damn busy, right before DX I decided that was just bs...I find I am trying to be more honest when people ask how I am. I don't want to come across as "cancer girl" but I realized that the fake ass smile I was planting on my face was just stupid when I was in pain or depressed. So am trying to find a balance- at work when I am tired, I rest. At home I rest more. My house is not as clean, I can't do as much as I did but ultimately is up to us to get ourselves better and we damn well better take care of ourselves so we can do it. I love my sister to pieces and am sorry to hear what yours is going through but mine is a complainer and a competer as well...very odd..she does care but like tonight we took my 84 yr old mom out to dinner and I was hurting bad and tired from a long day but had really wanted to spend a little time with my mom who I love dearly...anyway, it was all about her little aches and pains until I was ready to throttle her...but I didn't. It was about my mom not her or me. I just want to heal enough to get my mom over here living with us..since "it is exhausting taking care of her"...my sister's words. I have an son with autism and he would have my sister flat on her back in 3 days...as it is she has been whining that I haven't had momspend a weekend since my BMX! She keeps reminding me that all mom talks about is me and how worried she has been...like she is jealous, ahhhh...people are nutballs. I just pray for my strength and health to keep returning and then will get my mom over here where she is not such a burden:) We all have such different ways of looking at things. As for the majority (not all) coworkers, they see boobs and makeup and figure ALL BETTER. I have even been asked when my BMX is going to be....holy jeez...unless you are bleeding on the floor for some folks, you is ALL BETTER>Anyway, I had no idea I was torqued til I read this and am sorry for rambling.

Just remember- you have us for support always. And that ain't no small thing:)

travelgal6979

Thank you Jan and Anne SO much for listening to me vent...it meant so much to me and also to read what you're going thru as well and know that I'm not alone. 

I've feel kind of uncaring every time my sister tries to "up" me one 'cause I feel like I'm shut down on her emotionally and I don't want to.  I also don't want this to be how we handle our BC throughout the years...who's was worse.  But this has been her MO throughout the years so I'm kind of preparing myself.  I really don't want to play that game.  I'm trying to just listen and be a caring "ear" to her right now.  As you said Jan, I know she's really scared right now. 

Anne:  talk about having a lot on one's plate...a son with Autism and your mom being ill.  I wish you all the best and some peace and rest.  You have so much on your mind.  I'm so very sorry.  I wish your sister was offering you more support right now.