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Struggling alone

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

Hi folks,

i am wondering if anyone else has experienced what I am going through.  I was diagnosed stage II rectal cancer August 2015.  I told a few supposedly close friends, and I guess I am learning a valuable lesson in that.  I am pretty much the independent, giving type.  Since being diagnosed I have been pretty much alone.  I had friends, and still do I suppose.  I don't talk about my cancer, but I am not the same giving person I was.  i don't ask for help, but I am no longer so giving of my time or making dinners for people.  I never felt used, but looking back, I guess I didn't ever ask for anything, as I never really "needed" anything.  I don't have any family help, as we had a messed up life, like a lot of folks, but my older sister just never got past being moody.  I did tell her, as I felt I should, but she never contacted me back.

Presently I am taking Xeloda and doing radiation 5'days a week.  I take public transportation, and that has been ok but tiring.  I am strong in my faith, but my faith in humanity is surely being tested.  it will be 3 more weeks of radiation, then a month until I have to decide on surgery.  I am very grateful things are not worse!  And, I am trying to find a reason to even have the surgery.  I cannot imagine being alone and snubbed by the people I love, and enduring even a tenporary ostomy.  Some days I feel like Job.  "Miserable comforters are ye all!"

Hoping someone can provide a little insight or if they have had similar experiences.  I know people have a hard time knowing what to say when someone says they have cancer.  I get that.  But, I would much rather be alone than to have a friend ask me "did they do a colostomy?"   Yes, a casual friend asked that.  What she was thinking I have no idea!

 

thanks!

 

 

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

I know it's not exactly the forum everyone wishes to join, but now that you are here, I think you will gain the support that you need. I know it's not the same as physical support from people around you, but it's better than nothing. 

After three years into this Cancer thing, I have learned to be pretty open with folks, especially if I feel they are uncomfortable being around me. Sometimes it work sometimes not. 

I am sorry to hear that your sister didn't respond. 

Sue - Trubrit

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thanks so much for your reply!  i am trying to put myself in other's shoes in this.  I have lost a couple selfish friends, and only realized that now as I am pretty giving.  I know for sure I don't miss the petty gossip or every ache complainers.  I don't feel at all sorry for me, and it has put my life in perspective.  I do however miss the jovial parts of friendship.  But, thank you for welcoming me here!  The hospital I go to has some nice group stuff, and I am meeting some fantastic people.  I am 53, but feel like a grammar school kid looking for sandbox buddies!  

vtspa6
Posts: 172
Joined: Aug 2015

I say, welcome to the sandbox!  Sorry to hear that you have been dx'ed with cancer.  Since my husband's cancer, I have found this to be a wonderful place to get information, vent, and just to tell your story.

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thanks for the reply.  And I hope and pray for good results for you and your husband.  I think I like this sandbox,  so please pass the plastic castle mold also.  I am going to be in here a while!

Daisy13's picture
Daisy13
Posts: 43
Joined: Nov 2014

There are resources to reduce your burdens.  I have some ideas and I am sure others will as well.

Cancer center support servives Are you being treated at a major cancer center? If so, inquire about support services: psychiatry, social work, and also financial, and spiritual counseling that may be available to you.

Road to Recovery program Inquire if your cancer center participates in programs like the American Cancer Society 'Road to Recovery'.  It provides transportation to and from treatment for people with cancer who do not have a ride or are unable to drive themselves.

People will disappoint you You will find that a cancer diagnosis distances you from people.  Folks will say the most insensitive things in their ignorance. Often, people simply do not know what to say or how to support.  I urge you to be specific with your needs even though you are the independent type.  Some people may surprise you and rise to the occasion, those who don't are not worth your consideration during this sensitive time. Certainly your sister sounds like an individual who will contribute little to soothing you in your time of need. Don't waste your energy on people like that at this time.  

People will amaze you as well Search for those with compassion in their heart and you will find them.

Check your insurance policy for home healh care overage  Inquire as to the options for home health care. Medicare/Medicaid and private insurance often cover short-term home health care services. Also your doctor can request this for your after-surgery care at home. 

Church support You referenced your faith ... often a congregation will have volunteers that will provide support during times of crisis.  You must let your needs be known. Reach out.

Community and state organizations Check with the local chapters of the Department of Health and Human Services, The United Way, The American Cancer Society, and CancerCare.

Come back to this site often and share your experiences.  You will be supported through your journey.  You will find yourself growing close to your new virtual friends as they will understand in ways others simpy cannot.

Stage II is a fairly early diagnosis be grateful for this as with treatment you have an excellent chance at survival.  Your best option for life is to commit to your surgery.  Your concern that you may have to have an ostomy is understandable but obviously unreasonable. You must be strong and deal with what is.

Take care of yourself Eat as well as you can, as nutritious as possible. Check out complementary therapies that might be available to you at your cancer center: yoga, massage, acupuncture, meditation, visualization ... even if these are not the sort of things that have interested you in the past ... now is the time to take care of your whole person, not just the symptoms of your disease.  

There will be a time in the future when this will be behind you.  It will eventually be in your past.  Stay strong.

Peace ~ Cynthia  

 

 

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thank you Cynthia for such a fantastic list of ideas/support!  I will absolutely print this.  Cancer is hard enough, and yes the stage II is hopefully going to stay that way, as it is an early detection.  I guess I just feel like people were my friends, but they just never really cared about me that much at all. Some of the responses from a couple people very close to me were absurd. One friend expected me to take her to lunch the day of my diagnosis, because I had offered to treat for lunch. Then I find out I have cancer--and she grumbles about the lunch.  Ok, so I'm not the best friend chooser...lol

thanks for the support. I will definitely be here often.  I think the cancer shock wore off, and then the "hey, why aren't my friends calling" shock set in.  The people closest to me are in other parts of the state, but maybe that is good in a way as I can imagine that if they were here they would be baking me a pie...

 

oh, here is my little phrase

"Cancer is not a death sentence; it comes with a semicolon."

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I like your little saying!

What I've found is that any time you have such a major life situation you find out who your friends are. And often it's not who you think. But at the same time people who you think are just acquaintances will surprise you with their generosity of spirit. Cancer is an awkward thing to deal with emotionally. And some people don't want to be around you if they don't know what to say or do. It's easier just to avoid you. Plus some people seem to feel almost like it's contageous.

I've been very lucky with my close friends and family and I remember often being so thankful for them and wondering how I'd do it without them. On the other hand, I used to own my own business and one of my employees decided me being sick was a great opportunity to make me sell her the business and was stunningly horrible when I told her I wasn't ready to. I did eventually have to give it up but she was pressuring me within a week of my diagnosis.

I'd suggest finding a support group and seeing if there's some sort of emotional support opportunities at your cancer care centre. Maybe your friends will get themselves sorted out and try to behave better. Shame on them.

Jan

 

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

Thanks Jan.  yeah, seems like some days our lives  would make a great country song.  It is rough when people are insensitive, but I am glad to hear you have good family and friend support.  The hospital i am at is excellent, and I have solid support there.  years ago, an employee would be working extra hours etc to help the boss. Times have changed, and I just need a darn good reason to stay in the fight.  But, God is on our side.  

 

here are a couple more. I found myself crying so hard at times, and a stupid joke would pop into my head and I would start laughing. 

 

Now if only God would give me the ability to fly.
 
I always hated the phrase "anal retentive," but now I pray they are talking about ME.
 
danker
Posts: 1282
Joined: Apr 2012

I love your attitude with the little phrase!!Look up my history  I'm going on 6 yrs NED(no evedence of disease) and started out like you. Only I'm much older. LOL  So just take it a day at a time knowing you can beat it.  Good Luck

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

thank you so much for your reply. It comforts and inspires me to see people who are NED, but still sticking around to help others And to participate in this forum. I will be here for a while myself. I was really moved to see so many people reach out to me so quickly. And, i have a much better understanding, and compassion for those folks who don't know what to say.  I am here, and I still worry I might say the wrong thing!

 

God bless

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I was exactly in the same situation 2.5 years ago. I am a 50 year old male, diagnosed with stage 2-3 rectal cancer in May of 2013, radiation chemo, surgery with colostomy in October of 2014, more chemo. I was freshly married full of plans. Needless to say I was devastated. My teenage daughter was giving me trouble and when I talked with her I put in words the best way I felt. Support me or get out of my life. Even living alongside me is not enough. I did everything for everybody, now I needed help. I weeded out the ones that didn't give me support First time in my life. 

Cancer took away a lot from me: I have a 15" scar on my stomach, no butt whole and a colostomy that is a constant frustration. But I tell you what. I am back. I'm working and doing really well. This January was the time when I wasnt afraid to make plans again. Unfortunately my marriage suffered too. I'm still very angry that I ended up like this. But the way I see my life after 2 years is not any worse than before. I'm optimistic again and very active. 

You are going through a lot now. Come back here regularly, ask question all the time. This site literary saved my life in so many ways. 

You are not alone and you don't have to do this alone. We will be there for you all the way and soon all this will be just another bad memory hopefully. 

Where are you located in case you need advise on finding a good surgeon. 

All the best,

Laz 

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

Hey Laz,  thanks so much for sharing your story. I really appreciate people reaching out with their experiences.  I too share in difficulties with my child. My adult daughter has a drug addiction, and I know she cannot be in this fight with me, but I have told her point blank that my biggest wish is for her to be in recovery-- the one instance in which I will weild my cancer as a guilt trip! I am very spiritual, and cry out to God to give me a reason or a purpose for enduring this.  And I do see some purpose in all this. i know i have an impact on people i meet, patients, doctors, families. As i'm sure do you. I have a good team of doctors, and at the moment we are hoping to save my butt. It's all about location location. I admire your courage, and will look to folks like you as things transpire.   No ifs, ands or butts, we will get through this!

 

super thanks,

Sharron

jen2012
Posts: 1607
Joined: Aug 2012

Im sorry - it is disappointing.  I've always lived by not expecting things of people to keep from being disappointed.   Since my husband's diagnosis 3 years ago, I've been surprised that my closest friends at the time are gone from my life and other people that I was not as close with have been there for us.  It's bizarre, but I guess not unusual.  

Try to reach out to one person and explain how you could use help and you may be surprised.  People sometimes feel uncomfortable and like they are intruding if they try to help.   Even the colostomy question....while intrusive, perhaps that person had some personal knowledge about ostomies and was trying to help.  You never know what's going on in peoples heads.

 

It's difficult to ask for help, but I think taking that first step may be what you need to do. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Good point, Jen. They may not know what to do to be helpful and empathetic.

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

  We are constantly learning and evolving. 

About a month ago, I gave a presentation at our church ladies monthly meeting. During that presentation I told them how disappointed I was and how abandoned I felt after my DX. I appreciated the meals, but they were basically dropped off at the door. I only remember a couple of people stopping to talk. I desperately needed someone to natter with.

 Many of the sisters were shocked. it made them think. Some of them admitted that they were scared of saying the wrong things. They were scared. Cancer scares people. Terminal illness scares people, not just Cancers. 

I appreciated that meeting as much as the other women. It made me see things from their perspective.  We all learned and grew and that is what life is all about. 

We have to utry to understand others as they learn to understand our situation. 

Just musing. 

Sur - Trubrit

Lovekitties's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

Now that you have found us you are not alone.

You have gotten some good suggestions.  I would add that you contact your local American Cancer Society.  They can possibly put you in touce with additional services and support groups.

I was nearly 60 when I was diagnosed, and have had a perm ostomy for over 5 years.  While it was not the "accessory" I would have chosen for myself, I find that I can live well with it.  It takes some getting used to, but does not need to be the horror one imagines.

I often recommend the following book for those who may need either a temp or perm ostomy:

The Ostomy Book Living Comfortably with Colostomies, Iliostomies, and Urostomies.

by Barbara Dorr Mullin and Kerry Anne McGinn RN BSN OCN

The authors are mother and daughter.  The mother had the ostomy and the daughter is an ostomy nurse.

You may be able to find it at your local library.  I know you can definately find it on Amazon.

While we may not be close at hand, you can count us as new friends who will help you however we can from a distance.

Wishing you well,

Marie who loves kitties

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

I am so sorry you have had to join the cancer club, but you will find the people here are supportive and there for you. Having people who are going through what you are helps us all feel less isolated or alone. So welcome.

I totally understand your feelings. When I was first diagnosed one of the most heartbreaking results of cancer for me was losing people from my life I thought were some of my best friends. I think I am a lot like you seem to be. I am a caretaker. I am always there to help people. I think that makes it worse when the people we have “cared” for can’t or won’t reciprocate.

It is interesting how people respond when you tell them you have cancer. In my case, I was a manager for a government agency and had a very large portfolio. I knew I could not get through a major surgery and months and months of chemo without support. This meant I had to tell my coworkers and superiors about my condition. Amazingly enough, some of these people were no more than work relations and yet they came forward and gave me unfailing support. Of course I continued to do my best, more on some days and less on others, but they were there when I needed it and it meant the world to me. I retired a year after my first treatment ended.  Unfortunately I had a recurrence a few months after my retirement, but even though I was no longer working word got out and some of those same people were there for me once again and still are my “people”.

Then there were the personal friends. Some I wasn't as close to, more like acquaintances, jumped in and were there for me every step of the way. A person I considered my best friend, was not there for me during treatment either time unless I pushed. I understand she couldn’t deal with it, that it was “icky” but that relationship will never be the same. One friend, who was diagnosed with ALS while I was in treatment the first time still found time for me even while dealing with her own devastating diagnosis. I am there for her as well. Our friendship has deepened.

People ask and say the seemingly stupidest things. Some can be hurtful and some just make you realize how clueless they are. Many times people may be asking because they want to know so they can understand. They may really want to know what you are going through and don’t know the right thing to say. I think we can all figure out who the people with good intentions are and forgive them for their rough edges a bit.

It is the other people I have no patience with. I find the cancer death stories the most difficult. In my case with a lot of people as soon as they discovered I had cancer they started telling me about every person they knew who died from it, in detail. Then the seemingly clueless comments about my hair. “Oh cheer up it will grow back” seemed a bit cold and heartless to me. Of course it will but that doesn’t mean it makes it any less devastating when it comes out. Oh and how about the “can you still have a bowel movement” comment after hearing about colon surgery. I honestly think there needs to be a cancer etiquette class for people.

I tell you all of this because truth is, when you are surviving cancer you want and need to focus on the positives in your life. You just don't have the energy or the desire for drama and chaos. You start to understand that life can be short and the time you have is a blessing and shouldn’t be impacted by people who can’t be in your life through the good and the not so good. People who for whatever reason choose not to be there for you are fair weather friends and honestly you don't need them in your life. Cancer surviving is a lifetime endeavor. In my opinion it is better to have one or two really wonderful friends than a dozen fair weather ones. Cancer can make you feel like you have no control in your life. You have the power to choose who you share your life with. You get to make sure they are the ones who will enhance it bring you joy.

Good luck as you continue your journey.

Blessings

 

MAlice

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

find virtual friends and support here. Seems like your cancer is showing you the true nature of your family and friends, sorry they didn't step up. Many times a family has nothing to do with bloodline. I wish you well in your journey and welcome to our group. It's a scary thing and you shouldn't be alone. Congratulations on Stage 2 though, you have an excellent chance of a long life. Possibly this can be a fresh start in creating an amazing "Act 2." Good luck with treatment!

Easyflip/Richard

katie33745
Posts: 1
Joined: Nov 2015

Hello,

I am new at this, just received the cancer diagnosis 3 days ago.  I would love to hear from people who have been diagnosed with anal cancer.  Are there other sites I could check out for information and support?

 

Thanks,

 

Katie

 

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

the difference between anal and rectal cancer is that anal cancer comes from the skin around the anus and it's usually squamous cell carcinoma. Rectal and colon cancer comes from the inner linening of the intestine and it is usually adenocarcinoma. Both treatments start with possible radiation and chemo and anal cancer usually doesn't require surgey. 

There is an anal cancer group here and folks there are very knowledgable and friendly.

Good luck with your treatment.

Laz

Trubrit's picture
Trubrit
Posts: 5493
Joined: Jan 2013

I am sorry about your diagnosis.

Here is the link to the Anal Cancer forum. It is like this forum but Anal specific. There are lots of forums here on the American Cancer Society web site. 

http://csn.cancer.org/forum/196

I wish you the best as you start this journey. 

Sue - Trubrit

z's picture
z
Posts: 1414
Joined: May 2009

Hello, There is a anal cancer discussion board on the csn site.  Lots of support there, please check it out.  I am a anal cancer survivor who completed tx on 6-30-09 and have no evidence of disease.  Lori

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   One thing I found with a cancer dx is that it does not always bring out the best in people. I found that the people I most expected to be supportive were not. Unfortunately that included my brother who I had to give more support than he gave me and my wife who gave up on me and eventually asked me to leave. I have lived alone for the last ten years. I rarely socialise at all now. How did it affect me. In some ways it made me stronger in others not. I have been a survivor of stage 3 c colon cancer since 1998. I am now 65 , still at work and still living alone with many long term side effects of cancer and chemo. It is not the best way to live but sometimes you just have to play the hand you are dealt, Hugs Ron.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Ron, how terrible. I'm so sorry. I didn't know that about you. Sending you a hug.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    It is all ok . I don't blame her she unfortunately was avictim of things that no father should do to a daughter. We have never gotten back togeather but she is very sad about what happened to me and us . I have totally forgiven her and we are still very good friends just no longer tgeather. I still try to support her through the rough patches. Somethings you just can't forget . I guess I am happier alone now . My first wife played the field a lot . That was something I tried to overcome with counselling for both of us. She was not interested and left taking my two young children. I had grounds to try for custody but little ones need their mother. That was the start of another ten year stint on my own. So I guess I am a very experienced loner. Many people have said to me that we are not meant to be on our own. Sometimes it is better than the alternatives. Ron.

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

hey Ron,  sorry to hear that you have pretty much navigated this alone.  I think maybe it is just too hard also for people to think about or imagine our suffering.  I hope you are not totally alone.  I mean by that that I connect with folks at the hospital, and I spend time at the library.  So, basically, I do socialize, but as far as helpers...there are none.

but, I would almost rather have no help than what I saw and overheard today at the hospital.  Briefly:  there were three young women behind me on the escalator, and they were pretty much tearing this other woman down.  I felt bad as they were obviously nice to her face as they were talking about her tests, and then pretty much blaming her for her illness.  Then one of these women, I will call her bimbo, started talking about dying her hair, while another talked about doing her eyelashes.  I felt like saying something. But, of course I didn't.  i would have only said something if i thought  that it may soften their hearts.  But, some people are just cruel.  I do think that one of my friends is similar in thought. But, I am sure these women think nothing of tearing one another down when they are not together.  I am trying my best to avoid people like that.  I think their energy is just awful, and mostly I am learning to discerne those that feed off misery like pirranah.

That said, I think you seem like a nice guy.  If you were my neighbor, we would be fishing!  So, I hope you are filling your life with little connections here and there.  I have learned to like my alone time.

and...big time I thank everyone here for making me see that, for whatever reason, this is not personal to me.  I felt like I must be such a loser friend that people would not be here when I need them.  

 

God bless!

lilpep1972's picture
lilpep1972
Posts: 80
Joined: Dec 2014

hello Sharon

 I'm not as much a writer as a reader I was Dx wit stage IIIc  colon in Nov of 2014.. as you can see this board is absolutley amazing

the people are true friends maybe virtual but TRUE friends.. the information as well as the support is like none other.. I felt the same way a year ago very confused very alone, thought it was the end.. But along with my Dr's an the people on this board I know I'm not outta the woods yet it's only been a year but your life will return to normal.. Just a new normal..lol.. And let the people on THIS board help you with that they have all been down the road and are all willing to help.. wheneva you feel the need to talk or even a hug Sue,Ron,Rich and everyone else here are right there I promise you.. They are absolutely AMAZING people.. I wish you the best of luck 

just know in your mind you can an will get thru this.. read alot, meditate an exercise.. To me this thing we all have is as much a mind disease as it is a body one.. Stay strong an positive :) 

chris

wolfen's picture
wolfen
Posts: 1329
Joined: Apr 2009

I'm so sorry that you are facing this alone. I have lost a husband and child to this terrible disease. I am a member of a Grief Healing Forum and one member posted this. It made me think of your post here.

"We must learn who is Gold and who is Gold Plated."

This is a very hard lesson to learn, especially during a time when we are ill, frightened, and alone. My husband's friends were Gold Plated and still are, so I stand alone with my son and grandson. My daughter's friends were Pure Gold.

Luv,

Wolfen

Sharronoffaith's picture
Sharronoffaith
Posts: 76
Joined: Nov 2015

hi wolfen,  first let me say, I am very sorry for your loss.  I wish people knew that it is such a huge loss to lose friends and go through illness of ourselves or those we love at the same time.  i think maybe some people just cannot handle the thought of suffering.  I know my older sister is kinda like that.  my mom had heart disease, and she was in the hospital and needed to be removed from life support. I was the only one in my family to not leave her side.  I take no bragging rights in that; I just have always been that kind of person.  I think my sister just couldn't handle it, but I know she loved our mom Just as much as I did.  I just felt and wanted to be there.  I think those of us that are the caretakers maybe find it hard to imagine those who do not feel that.  I think that is some of my circle.

others, on the other hand, are just selfish.  I am learning...lol...

so, thanks so much for your reply.  Now you know who the caretakers are in your circle!  I will try also to seek out those gold folks you speak of.  I think I have some, but I am so afraid to ask.  Professional help has been awesome, along with this forum.

i wish you well, and keep you and everyone here in my prayers.  

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Oh wolfen. A husband is bad enough but a child? I can't imagine a deeper sorrow. I am so very sorry.

 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I told one of my good friends that I had cancer, she said "oh no that's terrible". We talked about 5 mins and then she said "oooh guess what, I'm going to JAMAICA".  I was in the WORST moment of my life, feeling like my world was crashing (because it was) and after 3 minutes of "oh what a shame", she started talking about her vacation.  You learn who your friends are.  At the same time, if you think about it, before anyone said the words "you have cancer" to you, did you even know that this feeling of despair and fear existed?  I have felt some fear and some despair but there is no comparison to the feeling when you hear you have cancer.  Thankfully over time it gets so much better.   Some people will step up and be wonderful, not necessarily the people you're expecting.  There are people who surprised the hell out of me!

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

oops

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