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Crazy Talk

jenn02
Posts: 17
Joined: Feb 2004

I am here in tears and I do not know what to do. I feel like have no support just ideas of what everyone thinks that I should do. If I have to keep up with the treatment and not really get any answears why should I--I want to be a normal or as close to normal 29 year old as I can. I feel my marriage is slowly sufferig and I am sure I have not been the best mother to my 2 year old son--I am just rambling becase I am so lost with the question to stop chemo or keep going--I think everyone was there to support me in the begining but know that it has been 18 months and nothing has changed I feel that I am losing my family support which is all I had

pattieb
Posts: 176
Joined: Mar 2003

Hi Jenn,
I don't have any answers for you but just to let you know that we here on this board are behind you 100% as far as supoorting you goes. Maybe it is time to get a second opinion. My onc is not giving me any answers right now when I ask how many or how long, I am currently on the same program as you, but had a ct done on thur. and he will decide wheather to change my treatment as it makes me so sick. keep your chin up and remember we are here.
Hugs
Pattie

andreae
Posts: 238
Joined: Sep 2003

Hi Jenn,

First off, I'm so sorry you're down. I think all on this board can relate to the more desperate days. I was diagnosed in January 2003 at 20 years old with stage 3 rectal cancer. I underwent pre-op radiation/chemo, surgery, and more chemo. Mets. were then discovered so I have been doing more chemo. From my understanding, so long as this protocol continues to work, I'm staying on it. That, of course, freaks me out. I have been fighting this battle for about 14 mths. now, not as long as you, and somedays I definitely feel tired. It frustrates me that I can't even remember what life is like not on chemo. I feel different from all my friends and the carefree lives they get to lead. I'm sure you can relate to some of those feelings. I don't know what you should do but I do understand your ambivalence. Are you able to communicate with your doctor? What is his/her rationale, goals and plans for you? Does he/she understand your stance,feelings and mindset at the moment?

I can't imagine what it is like to have to worry about a husband and child as well. But do try and not be so hard on yourself. I'm sure that you are trying your very best to meet others demands but leave some room for yourself. Probably the best thing you can do for them is focus on getting yourself well. Tell your family that you need them! In my experience, when the cancer becomes a sort of "chronic" condition and the impact of the diagnosis tends to fade, people begin to forget that you're still sick and struggling with treatment. Remind your family that you still need them. If you have others to rely on to do the laundry, make dinner, clean-up, ect. You will have more time/energy/resources to do what's important. The decision is up to you, and it's a very hard decision to make, but perhaps the decision should not be based on the roles that you feel you're not fulfilling properly. You're waging a war on cancer, while being a mom and wife - that's a superhuman feat. Do what you need to do for yourself and ask for the support you need - even if that means having someone in to clean, cook, etc.. We are all behind you 100% and you're in my thoughts. I hope you are having a better day.

Lots of love,
Andrea

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Dear Jenn,
I am so sorry to hear how upset and lost you're feeling. I'm only 2 months into my chemo, and my main side effect is now major fatigue. This does feel like a long haul, and you are right to reach out for more support. Andrea speaks very wisely, with insight far beyond the typical 20 year olds I know! Is there any way you can give yourself a day off and just rest or do something for you? My kids are in high school, so they are able to fend for themselves on my worse days, but it saddens me to see them deal with this.
Is there anyone that you are able to discuss all this stuff with? It sounds like you have some very good questions of your oncologist; does he know how frustrated and overwhelmed you are feeling? My first onc tended to take a very jolly attitude, which made it hard for me to bring up some of my fears. The second one seems to be a better listener.
Do you have any family that you can turn to with help with son and chores?...even having someone drop off a meal felt like a precious gift for us! I know from my work with families of patients with dementia, that some family members want to help, but often need some very specific requests, which they are happy to fill.
I know I'm rambling, but I hope you find some answers to your questions and more support for your flagging spirits.
This is such a hard road; keep posting here and let us know how you are doing. I hope your days brighten. Judy

KrisS
Posts: 232
Joined: Apr 2003

Jenn-

How frustrated you must feel. I can't remember how extensive and rapidly progressive your disease was, or what chemo you are on. As others have suggested, you may want to get a second opinion. Part of the frustration may be that no one knows for certain the answers. Another oncologist may provide some addition insight however, if your onocolgist cannot.

I have been on chemo for 13 of the last 21 mths. Off only while getting ready for or recuperating from surgeries, so I can appreciate the disruption to your life.

My tumor recurred, and new ones were developing within weeks while I was off chemo post surgery so I am reluctant to discontinue at this point.

My sister, however,just found a review article in a little tabloid magazine for oncologists about a study reported in a 2002 Lancet, a British medical jounal. The study attempted to answer whether there was any disadvantage in intermittantly stopping treatment of colorectal cancer patients who were in remission or had stable disease.

I did not have the whole article to read, just the abstract of it and the associated review. It was not a great study. They divided 500 patients into 2 groups. One group to recieve continuous 5 FU/Leucavorin and something called raltitrex(sp) that I think is only available in Europe. The other group stopped treatment after achieving remission or stable disease. They were evaluated with CT scans every 12 wks were to be restarted on chemo if things looked worse. Unfortunately only 37% of the people scheduled to restart chemo did that. (I don't know the reasons, not having the full article.) That meant that they only had 90 people to evaluate. That is not enough patients to have good statistics, but survival times between the two groups were only 1 mth different.

Andrea's comments and suggestions are wise ones. It is true that after a while family and friends tend to forget what you are going through especially when you are outwardly looking "normal". You have a lot on your plate as a wife and mother, of which I am neither. I can only imagine in how many directions you must feel pulled, but just from the way you write, I suspect that you are doing a much better job of juggling all that than you think. As Andrea suggested, sitting down and talking with them about your fears and needs may be helpful.

Try to take care of yourself.

Best wishes,

Kris

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

What everyone else thinks you should do has little to do with your decision. Only you can decide what is best for you. I am only into my second round, and
feel the same as you. Bottom line is that you are the bottom line..the decision is ultimately yours,
and that is the most difficult part, because no one wants to be alone, but there are always choices and alternatives. If you can't get the support you need from your family, look elsewhere;
there may be resources in your community that you
have overlooked. Ask your doctor or a social worker about other possible solutions - childcare
assistance, counseling, nutrition, etc. Bud

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

((((((jenn))))))

I know how it is to have a little one during this cancer gig. My baby was 20 months old at the time of my dx. I have 4 other kids too. Suddenly I was out of commission to be at their beck and call. It took a long time for all of us to readjust our rhythm. And alot of tears and tantrums (mine). They just didn't "get it" and so I find refuge here on this board.

As for your decision you get to make it since it is your life. If your spirit/heart is telling you enough is enough then listen to your body. Give yourself permission to listen and then decide.

In what way do you feel you are losing your family support? Are they expecting you to 'perform' at precancer/chemo levels? Are they tired of you being 'sick'? Are they wanting the whole cancer thing to just go away? This is some of what I experienced.

I am glad you come here and share. We all need each other.

peace, emily

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Jen-- all of our support/information or advice on here is an indication of exactly what you are going through and what we have all been through--it truly saddens us that a young lady such as you is filled with such emotion.No matter what anyone says here it is understandable that you will still feel lost.
BUT---we have all been there and we have all felt the same way as you feel right at this moment--nobody can change that--and no matter how much we say it is still ultimately up to you to make decisions-as we all have.
I guess many of us "look ok" on the outside--me included--but it is difficult for people/family /friends to realise that we are still in most cases very ill--in body and in mind--because we all live to a certain extent in fear.
You ARE a wonderfull mother no matter how bad you may feel--you prove that just by telling us that "you think you are not a good mother"--your love for your family shows through all this--I am certainly sure you are coping the best you can during this very difficult time.
We can all offer the most soothing and supportive messages--and we know it can seem as little help.
But nonetheless, we are all here for you Jen.

When I was VERY, VERY depressed I asked to see a phsychologist--I saw no way out--I swear this to be true---he helped to me find myself and deal with the "hopeless / depressed" state I was in. This may not be an option for you but it certainly helped me through.My wife (also Jen) came along to the phsyc. sessions to try and understand why I had "changed". Many words came up in those sessions--fear/ anxiety/ loneliness /depression/ sleep deprivation /fatigue---anger and moodiness--yes--I had them all Jen--you are truly going through all these phases and the chemo excacerbates every one of them!
As for family--you must / have to continue to talk to them and remind them that you need their help/love/support--people sometimes forget.
our love to you--kanga and Jen

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi, I just wanted to tell you that although I do not know what chemo you are on, I am 33, married and also dealing w/ this hell. I am lucky, right now at least, I am in remission (you can read my predicament on "nonspecific lung changes". At any rate, I do know how you feel. Chemo is awful (especially Xeloda!!) it's bad enough that you have cancer, but if you can't walk or work w/ your hands it sucks even more. I hated the creepy feeling of being on chemo! You know, only you can say when enough is enough. The scariest thing through all of this for me is the thought of leaving my husband alone. His mother died when he was 13, and it really troubles me to think of the possibility of being another woman in his life who might leave him.....Sometimes I feel like if I had known this would happen to me, I never would have married him, to spare him this worry, anxiety, etc.....I know it sounds "cliche" but it sounds like you could use counselling, or Wellbutrin (anti-depressants)......You really need to talk to your doctor about these concerns and if they give you somekind of line of B.S., maybe you should consider changing to a more "positive" doctor. I will read through your old memos to find out whats going on, but I will support you. I know how bad this sucks! I know you must feel like sometimes you'd rather be dead. Or you would rather live out your life, come what may, w/o "treatments" and all that ****. Just know, you are not alone, OK.....

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

Jenn,
I'm in the middle of a 30-week 5-FU/Leuc treatment, typing this after my 18th injection - and I feel like crap.
You have had to go through this for what seems like an eternity, and still you desperately want to be a 'good mother' - since you obviously care, and do everything you can - that makes you a good mother. Think of those healthy mothers or fathers who don't give a damn. You're better than any of them.
The tone on these boards is overwhelmingly positive, but that doesn't mean we don't feel the anger, despair and fear. I have kids of my own, the youngest is nine, the oldest fourteen - and they are being so brave for me. But when I feel down and cry, they cry with me. I haven't done much crying lately, but it's still there inside.
If your family can see how you feel, they will forgive anything.

There is a high proportion of younger cancer patients on this board, with busy lives, kids, and this disease in what should be the prime of our lives. You are certainly not alone, and your 'crazy talk' reminds the rest of us that it's OK and normal to go a bit crazy sometimes.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Hi, Jenn -

I'm so sorry you are feeling the way you are. I think many of us here have been down near the depth of despair you are feeling right now. I know I was. My ex served me with divorce papers two days after my surgery, my dad died from cancer two weeks before my diagnosis, I had to leave my home and find an apartment and get a part time job to make ends meet. I had no one to talk to, my ex alientated my kids from me and kept me from being able to see them and wouldn't let hem even talk to me on the phone. There were many many times I went to bed at night and wondered why I was doing all of it - treatment, jobs, not being able to see my kids, loosing all of my posessions... and how easy it would be to just stop treatment and just fade away. But I didn't. There was something in the back of my mind telling me I still have work to do here. There's a reason why I'm getting treatment. Someone somewhere needs me - and I have to be around for that when the time comes along. So I finished my chemo and I got back on my feet and I started my life over. I have met many new and wonderful friends and I am moving forward with my life and career despite the hands that were dealt me a couple years ago.

You have a little boy who needs his mom and will always forgive her for anything she may do because she's sick. You have a large group here at semi-colon central wh will stick with you and give you a cyber hand hold. Find new and better friends there who will support and stand by you.

You will get through this and you will be so much stronger for it. Always remember in your heart that you are a good person and this is a test. You were chosen for this test because you have something to give back to the world and you will can handle it.

Best regards and keeping you in my prayers, Jenn...

- SpongeBob

Sheepy's picture
Sheepy
Posts: 48
Joined: Nov 2003

SB - I didn't know all that had happened to you. I thought my ex was evil, but since my cancer diagnosis she's been showing signs of humanity. Only signs, mind.

I think the lows make the highs even better - and however long I live now I have no intention of living a life of misery!

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Alright Jenn...as you can see, the entire Calvary has showed up to offer you support. Now here is what you need to do...

Go get your son and hold him on your lap. Go ahead, I'll wait...

still waiting....

don't worry, I'm still here...

NOW...look into his precious little face. Look how he looks back at you. He doesn't care if you look tired, your hair has thinned, or you are crying...he just knows that you are his mom, no matter what. He needs to be your force to get through this. When I was diagnosed, my kids were 2, 4, & 7. THEY were what kept me going. I am not really sure if I would have fought so hard for myself. I know it's hard. At some point you just want to scream at the top of your lungs that you're just overwhelmed. But you CAN get through this. Failure is not an option!

Know you can come here anytime you need to vent...we all understand.

Stacy

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