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anyone else doing this alone

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i think this is my biggest fear. i am alone in dealing with this. at the beginning i had my brother's support as long as i lived with them, but when i overstayed my welcome and moved home, i knew he would not be there for me. i have 7 sisters/brothers, many very bad things have happened to prove to me they are not interested in my best interests. not one has helped me except for the brother i mentioned. i have a very hard time asking anyone for help and especially them. i spent holidays alone, no invites from them. i disowned them a long time ago so i don't know why i would expect anything different.i went thru the last 5 months of chemo alone. i've been ned thruout, but know things can change very quickly. in the last couple weeks, a lymph node on my neck has swollen and i am sweating like crazy. both of these things were symptoms before i was diagnosed. so that scares me, that maybe it's back and the avastin isn't working. that i may have to go on chemo again. and honestly i truly don't know if i can do that, being on my own with no help. i have been very depressed and keeping to myself. but the thought of chemo again with no support really scares me.

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

tesslee,

While you may be feeling all alone, please know you are not. You can always come here for support, advice or just to vent. We welcome all here, so come here for your support, we all get the challenges that one faces while doing battle with the beast. And Happy New Year to you as well.

Don

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

and Happy New Year to you also. i will try to post more often here.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

are having to deal with something so horrific without a personal team of support. I started out posting on this board last year and now do most of my posting on the anal board. I check in regularly to see how everyone here is doing and that is because the members here are like "family". I have been blessed with an exceptional support system of family and friends. However...there have been many times that I too felt "alone" even in the midst of those I love. On many occasions the comfort I sought came from this forum. That is because the members here understand every nuance associated with dealing with cancer. Family and friends don't always "get it". I encourage you to come here often and always with the certainty that you will recieve the answers you seek and the support you deserve. May you have a blessed New Year.
Warmly,
Joanne

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Tesslee,

Well, from how you describe all those siblings, it sounds like you are much better off NOT having them around and interfering. Hey, just because one might be born into a family with lots of siblings, does not mean that anyone is bound to get along with or even like your siblings/family. For those who have close family ties, that is great and I'm sure it's wonderful... myself, I've never been that close to my family. We don't fight, we don't argue, there is no reason for us not being close, but I guess we are all just individual people with totally different interests and travel in different social circles... and there's nothing wrong with that. But you say some very bad things have happened with your siblings to prove they are not interested in your best interests... then you should be celebrating that they aren't around to be doing more horrible things while you are not feeling up to dealing with them.

As a single person, I can relate to being alone (IE: living on my own with my dog and cockatiel) :) And I love it. I can set up my home the way *I* want it to be set up, so that it is comfortable for ME. Ok, maybe this is selfish, but , I don't have to share it with anyone else so therefore it can be set up so that it's all about me and my comfort. One of the symptoms I have found to the chemo and treatments is "insomnia", which means I can be up at all hours of the night, wide awake with no intention of being able to sleep til who knows when. On those nights, I can either play on the computer by coming over here, reading posts and making my own comments, or I can watch whatever I want on television (I PVR a lot of shows that I'm interested in but not necessarily at home to watch, so I always have quite the stack of shows to catch up on), or have DVDs stacked that I haven't watched... and don't even mention all the books I have bought and still need to find time to read ;) Of course, one of my hobbies/jobs is as a Publicist for a couple of local theatres in the city... and as a Publicist, 80% of the job is done on the computer. So I don't have to leave my home and have more than enough to keep me busy and occupied, especially on those days where I just don't have the energy to go out, or if I'm not feeling well.

Now, you haven't mentioned if you have a circle of friends who you can rely on. Along with not having the energy to go out when I'm not feeling up to snuff, I do have friends who all have offered and want to help... so things like grocery shopping, or picking up prescriptions, or picking up a treat if I have a craving... or coming over for a visit or to watch a movie. Those are on my down days. On my up days (which there are way more of them than down days), my friends and I will do everything from going to rehearsals, going to movies, going out for lunch/dinner, or any of a multiple of things outside of the home.

So being alone, in that you aren't living with someone, can actually be the best of both worlds. You can have your private time when you just don't want to have someone around, and then you can have people around if and when you want them... AND you only need to have people that you like, respect and feel they like and respect you too.

If you don't have any friends who can help out, then talk to your doctor about getting some homecare help. Figure out what kind of help it is you feel you will need. Grocery shopping? Housecleaning or tidying? Someone to make meals that can be made in advance and frozen? Whatever help you feel you are going to need, talk to your doctor and see about getting homecare to visit you. From the sounds of things, you don't know if you are going to be going on chemo again, but that you are afraid that if you have to, you aren't sure if you can do it without help. I think you will be very surprised at just how much we can do on our own... and for the couple of days where we just don't have the energy to do anything, those are the days you look at having someone come in.

Yes, cancer is scary... and anyone who says it isn't is either lying or trying to make light of something they don't have a clue about. But scary does not mean that we become unable to do anything for ourselves. It just means we have to plan for the days we know we aren't going to have energy, or that we are going to be feeling sick.

So, speaking of planning, when are you going to make the appt. to go in and have that lymph node looked at by your doctor? I think you'll find if you are active in planning and getting results, then you won't be sitting around scaring yourself about the "what if..." potential. Happy New Year... start it off with being good to yourself and who cares about those who haven't been around to help in the past?

Cheryl

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

i have been mulling this family question over the past few days because some members do seem to be struggling with the questions of how to co-exist. I am not at all qualified to speak on this topic because I have a very supportive family but like Cheryl I would not say that we are close. When you do chemo you do it alone....when you are in pain you do it alone....no one can change this....if you have a friend who is helpful and supportive that is great....if you have co-workers or neighbours who can send you a casserole that is great..

I think the thing that I want to add to this discussion is that one....we are alone no matter with whom we live

and second it seems that anger during the cancer fight is a really wasted emotion....anger at friends or siblings because they aren't doing what we think they should be doing. Anger that hospitals and docs and nurses keep us waiting....or whatever...it just does not seem like a helpful or healthy emotion to me. I sometimes picture my cancer cells just sitting waitin for me to get upset and pour out all those stress hormones....munch munch goes cancer because they love that upset state. just sayin for me a quiet mind seems to help....

tesslee you should maybe try to see a doc and maybe that will quiet your mind....we are so good at diagnosing ourselves and fussing and fretting....we all do it!!! and keep posting because we do understand....

all the very best and a hug

maggie

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

While I too live alone, I do have family and friends who will help if I ask...but I seldom do. Mags is right, this fight is done alone. Don is right, you are never really alone as long as this board exists. Everyone here will reach out to help you through the tough spots.

Perhaps when you see your doc, you could discuss your anxiety. While I personally don't do much with drug therapy, it may be that he/she can prescribe a mild something to help you get thru the worst of days.

Our family connections are only a matter of blood. Bonds are built with people we care about and who care about us. You might also look into a support group in your area. You may find that there are some folks you can form a personal connection with.

Please contiue to come here and post. We all care.

Marie who loves kitties

christinecarl's picture
christinecarl
Posts: 539
Joined: Sep 2009

I live alone and have no family in the city I live in, all my family lives 250 miles from me. I am thankful for the friends I have here, when I went through chemo my friend Nora moved in with me to help, she kept me sane. So let us be your friend that is there with you. I realize it is not the same as actually having someone in the room, but I hope you can lean on us, we will help pull your through. I will keep you in my prayers.

-Chris

AnneCan
Posts: 3693
Joined: Oct 2009

I am sorry you are alone. I do hope you have friends you can ask to help you. Regardless, as Don said you are NOT alone as there are many here who want to help you through this. Try not to keep to yourself; even doing small things with friends will help you to feel you are not alone.

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

I would be scared in your situation, I'm sure. I'm so sorry that it's this way for you. Do you have friends or perhaps someone from church who could help you? A neighbor? If you have people who ask if they can do anything for you, don't be shy. Let them help! And be specific with your needs. If you don't have food in the house, ask them to pick up groceries for you. Whatever you need.

And as already been stated, we are a family here, and we want to be there for you. I wish I could give you a real hug, instead of a cyber one, but I want you to know that I'll be praying for you.

*hugs*
Gail

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Tesslee,
I to am sorry you feel alone. I am blessed with my older sister that is a long time (like 30 years) breast cancer survivor. They told her she had 6 months. I am the youngest of 4 siblings. My cancer scares my oldest brother. The other brother I don’t talk to. He makes me look tactful.

I have the best care giver anyone could ask for with the scary old woman. Still, this is not enough at times. The scary old woman has pointed out to me that I get on this board more when I get scared. Yep, this brain tumor scares the hell out of me and that damn drug Keppra sure as hell is not helping. In fact it makes things look worst then they are. My body says the tumor is benign. Also if it was cancer my CEA should be damned high. It is only 1.3. Hell that damn tumor is the size of a golf ball.

Bottom line. Yes thank god we have this board and that we can all talk freely with each other. I think it was my buddy Pat that points out with us we can say a very few words and we all know what the hell we are saying. To non cancer folks it would take pages and they still would not get it.

Keep posting and keep the good attitude attitude attitude!!!!!!

Kerry ( the old hard ass coot that needs this board to)

Annabelle41415's picture
Annabelle41415
Posts: 4187
Joined: Feb 2009

So sorry that you feel that way and that you are alone. It is so precious to have a support team behind you, even if it is a spouse or sibling. Not really sure what to say except maybe confide in your one brother that has helped you through and explain how you feel. Hoping that the node is nothing but a symptom of the viruses going around and you are fine. You are always welcome to post on the board for help as well. Hope that you get to the doctor soon and get the relief that all is right.

Kim

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

i hated that i posted this yesterday. i guess i was embarrassed. i really have a hard time with others helping. my neighbors have offered to help and i never take them up on it. altho my one neighbor took care of my yard from the beginning of the season until the end, even raking leaves without even asking. she's one of my angels. i mowed my grass one time and if not for her i don't know how it would have gotten mowed. yes my hhc nurse gave me resources for help, i found some on the internet, but i haven't asked for it yet. Christine i read your bio and i loved what you said,that cancer has taught you to ask for help (i hope i didn't get that wrong) and i guess that maybe that will be my lesson as well. but it will be a hard one and i'm not sure i'll pass, lol.

i have avastin chemo tomorrow and will talk with the chemo nurse about seeing the onc. i may just skip the onc and see my pc doc instead. he's been my doc for years and i can talk with him. my onc on the other hand doesn't really want to talk and it's hard for me to talk with him. my pc doc has suggested i see their onc (the one they refer their patients to), so i have been thinking about that. i just love my chemo nurses (my other angels) and the staff there.

thank you all for your kind words. it means a lot to me.

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Tess, I think it's good you made that post yesterday. You were only venting a little. Use it to see that maybe you were having a sad day because we all do. Now that it's over you can think about better things. We are all here for you. I hope you read my bio. Like you I always said no thank you to help in the beginning. Then I realized I did need the help and the people that wanted to give it were being kind and generous. I learned not to say no and that was kind of hard. It is one of my lesson's learned in this chapter of my life. By letting others help, it helps them get through your cancer too. You know that look in someone's eyes when you first tell them about your Ca? The pain and tears? There is nothing they can do for you. So when they think of something, like raking or cooking soup, let them. Or if they ask is there anything you need, I bet something comes to your mind and it's ok to tell them actually there is something. It's healing for them and it helps you. You can use that energy to fold your clothes or whatever. It's time for you to help your body heal.

Take care friend, Gail

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Tess,

First lesson to learn here... there is absolutely nothing you can ever say or post here on the board that you should ever be embarrassed about. What you posted actually opened up a dialogue for a lot of folk here... I bet everyone who read your post (and the responding posts) all stopped to think, "Gee, what is MY situation when it comes to family, friends and resources?" And it made us all take inventory of what we have, what we don't have and what we may need to plan for as we go along this journey that can (and hopefully will be) a LONG ONE :)

Ha! I live in an apartment so yard maintenance isn't something I have to think about... but when you said a neighbour took care of your yard from the beginning of the season until the end... WOW! That is one very friendly/helpful neighbour you have there! And I bet it made the neighbour feel good that he/she could do their bit to help you out. I think someone else mentioned it here, and it is sooooo true... when people offer to help, they aren't just asking with hopes that you say no, everything is alright. They truly do want to help and they don't want to do something that is useless and not helpful to you. They don't care what it is... as long as whatever it is will give you some relief and/or help, then they are happy. Human beings thrive on being able to nurture those who can use something we supply, whether it's yard work, cooking, laundry, grocery shopping or even coming in and watering the houseplants. Whether the job is large or small... as long as it's something that will help you, then people will trip over themselves to offer you their assistance.

And if you get those feelings like, "Oh, I don't want to impose on anyone. I feel bad even having to ask for help. People have busy lives, they shouldn't have to fit me into their schedule", then think again. People WANT to help... not only because it really does help you, but it gives themselves a feeling of self-worth as well. I bet the majority of people, including all of us here on the board battling our own battles, would feel horrible if we knew someone was going through a rough time in their lives and we did absolutely nothing to help. Especially those of us who have had to depend on others help in the past, all the more reason when we are feeling strong and good, we want to help others. So every time someone offers to help and you say, "No thanks, I'm fine, I don't need help", it is a step backwards for those who really do want to help but feel maybe their help is not worthy enough ;)

Yes... I think we all can understand that you love your chemo nurses. I believe, to become a chemo nurse, you have to have the pre-requisite of being an angel in scrubs :) It seems to be a universal feeling amongst everyone who has had to go and sit in those darn chemo chairs... that the place is run by angels. Rarely have I heard anyone complain about a chemo nurse (altho, I'm sure there is the occasional Nurse Cratchitt somewhere out there) ;) So, if you do change oncs to one that you will love just as much as your chemo nurses, and that means then that you will have to change where you go to get your chemo... just remember, chemo nurses are everywhere at all the chemo units, so you won't be short any angels :)

I, for one, are really glad you opened up this thread and topic :)

Cheryl

christinecarl's picture
christinecarl
Posts: 539
Joined: Sep 2009

It definitely took practice learning to lean on others. My friends pretty much had to beat it into my head. It is not a sign of weakness to reach out and like others have stated, they too get something from it.

There is a program called Chemo Angels, you can google it and become part of it. It is basically like a chemo pen pal, they send you notes of encouragment and small gifts. Sounds strange, but the fact that a complete stranger would reach out like that really helped renew my faith in others. I remember just after my last chemo Robin (my chemo angel) sent me this frog cookie jar, I opened and just sat on my floor in tears, the kindness of others can be truly astounding to see.

I went to a therapist a few times after chemo ended, my Onc had the names of 2 that worked with cancer patients, ask your Onc. It might help to talk to someone. Oh and switch Drs if you feel your needs are not being met, this is a long journey and you deserve someone that you feel is in your corner.

Don't feel embarrassed to post what is weighing on your heart, we are all here to help carry you when you need it. I hope you start to let others in on this fight more often.

Good Luck with your treatments!!!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

feel better, venting is an excellent medicine sometimes !
Hugs!

Patteee's picture
Patteee
Posts: 946
Joined: Jul 2009

If I could just add-

:)

I am not alone. My 3 kids live with me. And it was as though I was alone when I went through chemo. They weren't actually helpful. My mother is over 3 hours away, along with my 2 sisters. They were up here a lot. My mother would open my front door and not stop until she left. All the laundry, grocery shopping,cooking- wow, she really went overboard. Between the 3 of them, my bases were covered.

But I was alone. Agree with the above about really wishing I could just GIVE my chemo experience to another. That would have been wonderful. lol I never really had anyone, work, friends or family ask what they could do. I had a whole lot just DO. Example: my coworker- telling me her husband was going to be gone over hunting opening weekend and she wanted to come and clean my kitchen and bathroom. Instead of saying no, I started crying. Yes, I let her. And I slept the entire Saturday she was here. Another time, I was just out pushing a shovel over the driveway, maybe an inch of snow. Not really a big deal, the cold fresh air felt good, felt good to get a bit of exercise. Until I heard my next door neighbors piercing scream, "PATTY WHAT ARE YOU DOING?????? PUT THAT SHOVEL DOWN RIGHT NOW!! SKIPPY WILL BE OVER IN A MINUTE TO SHOVEL!!" (my next door neighbors are in their 70s!) And after that, my driveway was always shoveled before they did their own. My neighbor on the other side? Nice enough guy- but he tends to not think of things- really he needs to get married and have a wife do that. He and I talked after my dx and he must have told his own mother. She lives several hours away and comes and sees him about 1x a month. Never fails, he will come to my door after she leaves and say something along the line of, "well, Mom was here and wanted me to make sure I asked how you are and if there is anything I can do....." That always makes me smile, cause truly, the thought is genuine and the intention is good.

I truly believe that every single act of kindness from all my people, came from a place of warmth and love. For each and everyone of us have been or will be in the position of needing another. Neighbors, church groups, co workers- they really really really want to help. All you have to do is let them!

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

Yes ,I did it alone. I was married when I was dx but my wife could not bear to come to chemo or even talk about cancer. My brother was not much better he nearly had a nervous break down when he learned I may die. I think I was more support to him than the other way around. My wife eventually asked me to leave as she could not handle the constant illness. Since cancer I have had non stop illness . I am just about had it now some 13 years later. Auto-immune diseases have crippled me and I am alone. I live alone,work alone and play alone(fishing that is:) ). Constant illness has chased most of the friends I had away. I think they think it's catching. There is an old saying ,whatever does not kill you ,makes you stronger. It is true. I am tougher now emotionally than at any stage in my life.
From my perspective I didn't need friends or family to fight and beat cancer,EXCEPT for here,these are my friends ,they understand and I can talk with them. I have been on these boards for nearly a decade. Any time day or night I can talk with them. Please let us be your friends to help you thru,Hugs.Ron.

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

Yes ,I did it alone. I was married when I was dx but my wife could not bear to come to chemo or even talk about cancer. My brother was not much better he nearly had a nervous break down when he learned I may die. I think I was more support to him than the other way around. My wife eventually asked me to leave as she could not handle the constant illness. Since cancer I have had non stop illness . I am just about had it now some 13 years later. Auto-immune diseases have crippled me and I am alone. I live alone,work alone and play alone(fishing that is:) ). Constant illness has chased most of the friends I had away. I think they think it's catching. There is an old saying ,whatever does not kill you ,makes you stronger. It is true. I am tougher now emotionally than at any stage in my life.
From my perspective I didn't need friends or family to fight and beat cancer,EXCEPT for here,these are my friends ,they understand and I can talk with them. I have been on these boards for nearly a decade. Any time day or night I can talk with them. Please let us be your friends to help you thru,Hugs.Ron.

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

Yes ,I did it alone. I was married when I was dx but my wife could not bear to come to chemo or even talk about cancer. My brother was not much better he nearly had a nervous break down when he learned I may die. I think I was more support to him than the other way around. My wife eventually asked me to leave as she could not handle the constant illness. Since cancer I have had non stop illness . I am just about had it now some 13 years later. Auto-immune diseases have crippled me and I am alone. I live alone,work alone and play alone(fishing that is:) ). Constant illness has chased most of the friends I had away. I think they think it's catching. There is an old saying ,whatever does not kill you ,makes you stronger. It is true. I am tougher now emotionally than at any stage in my life.
From my perspective I didn't need friends or family to fight and beat cancer,EXCEPT for here,these are my friends ,they understand and I can talk with them. I have been on these boards for nearly a decade. Any time day or night I can talk with them. Please let us be your friends to help you thru,Hugs.Ron.

ron50's picture
ron50
Posts: 1260
Joined: Nov 2001

being that emphatic the joys of vista and dial up:) ron.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hi Tesslee,
you are not alone here!!!!
even with heaps of family and friends I feel more emotionally connected to many on this board then to my closest friends and family. In fact sometimes I email my friends some posts or show my wife some of the posts to explain where I am at or why I believe cetain things.

I have many odd beliefs, one of them is through the act of posting we are doing something positive and kind and I believe that this helps kill cancer cells. I have a hugely complex book on this and I will share a summary when I get to reading it.

I am up to page 100 in my Quest for Life Book. One recommendation they gave is forgiveness because it takes so much energy to hold onto grudges and past hurts. The act of forgiving others maybe even family helps keep your energy for living and hopefully finding a calm inner peace. Just thought I'd share what I read and beleive myself and try to so myself.

I am glad you made this post and you have chemo angels to help you.
Goodluck with your chemo.
Pete

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Pete thank you for the reminder about the forgiving thing. There has been something that I have been trying to figure out and the light bulb just came on! Now my shoulder's feel like the wieght is gone :) Ok, time to get off here and get ready to go to chemo.

Thank's friend, Gail

sasjourney
Posts: 393
Joined: Jul 2010

We are here for you so you will never be alone. I am blessed with a very supportive family, but I try to shelter them from the pain, too. I know I can turn to this board and express what I really feel and I can relate to these special people. I know God is with me on this journey and He will never leave me. My faith has grown so much stronger and it really gives me the strength to keep going. We are here for you whenever you need someone.

Hugs,
Sara

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

thank you. my nephew started sharing old family photos on facebook so i started doing the same. so we have some dialogue going on. my caregiver brother and i are speaking again. it's a start. thanks.

plh4gail's picture
plh4gail
Posts: 1232
Joined: Oct 2010

Yess....that's great to hear!

smiling for you, Gail

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