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Sick and tired.....

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

Hi All~

Going through a tough time of it mentally and need to vent.....

As you all may remember I recently decided to stop chemo treatments. The side effects were so violent that I thought I had better listen to my body as I felt it was telling me something wasn't right. I wanted to look into more natural or homepathic forms of treating the whole body.

Short synopsis of cancer history... dx in May 04, chemo radiation treatment month of June 04, surgery removing rectum, anus, vaginal wall and female parts, rebuilt vaginal wall and permanent colsotmy. Drs felt I was 99.9% cured but for the sake of the possible .1% still in body wanted to continue with chemo regimen. I handled everything relatively well until the second round (out of four) of chemo.

It was probably one of the hardest decisions to make... coming off chemo. But it was also liberating.

I sent a mass email (which I have been doing all along with great responses) to all friends and family letting them know my decision, the whys and what fors. Mostly I have received postitive feedback with some people taking on the research and looking into the homeopathic possiblities and finding local people to consult with.

Others, parents included, have expressed dismay at my "quitting" chemo and have voiced I am making the wrong decision. These people have caused me to seriously reconsider my decision and have thus taken away my feeling of peace.

I have to explain that when I say "mass email" it is a very generic letter only hitting on the most significant points. I don't go into every little detail about what I have been through and what my life is like now. There are a few very good friends that know everything but no family members. This will give you a little insight as to the depth of involvement of my parents... they don't want to know. My dad confessed he doesn't even know how to spell colostomy and couldn't find anything on the internet when he went to search for it. This coming from the man who would have reamed me out totally if ever I gave that as an excuse for not doing my homework. I took it as a sign that he didn't want to know. He and Mom have called me maybe twice in the 8 months of treatments and now only call because I gave them hell for not caring one wit about their only daughter.

I am sick and tired of the "Monday Morning Armchair Doctors" passing judgement on me and my decisions. I know I would advise others to ignore them and go with what feels right in the heart. I would also suggest cutting those that are negative off of the "mass email" letter.

I am an eternal optimist and always hoped that the relationship between me and my parents would get better. And I even hoped that maybe that would be one positive result that came out of me having cancer. But the fact of the matter is that it is never going to happen. I can't do it on my own anymore. Not only am I trying to get through cancer I have to now mourn that they have to be out of my life. Something my husband, who is my #1 cheerleader and solid as a rock for support, is ecstatic about. He can't forgive them that not only have they not taken an interest in my welfare they never once called to find out if I survived my surgery. He is sick and tired of them hurting me at every turn.

I usually am a very strong person and can tell most people to "shove it" without batting an eye. But this last bout of dissention has really rocked my confidence. And that makes me mad.

Well. Now that I am done whining.... thanks for letting me vent. I don't feel better yet...but it will come.

MJay

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

MJay -

Like with me and my ex-wife... sometimes we have to get rid of ALL the cancers in our lives to be completely healed.

Congratulations on your decision - as painful and difficult I'm sure it was, in the long run I have no doubt you will be better for having made it. You may want to let them back in at some point, but it will be on your terms in your time. Another bold, brave call by a true survivor.

Live strong, MJay

- Bob

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Oh MJay!
I am sooo sorry for what you are going through. This whole process is difficult enough, without rotten family dynamics getting messed up in it. You have demonstrated much wisdom in your past entries (as well as this one). Use your wisdom, decide what is right and go for it. Trust yourself and rely on those individuals who have always been there for you, to get you through.
Mary

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

Hi Mjay,

As a parent myself, I just cannot imagine not being supportive of my two grown children....it is totally alien to me. I can imagine your sadness but how wonderful to have a loving supportive husband....that is even more important.

It is so difficult to make important decisions, especially as critical as yours but you have to do what is right for YOU and not others, who always seem to know best! However, I am sure there some close to you who are just really worried about the outcome of your decision and, in good faith, are showing their fears and anxiety. In the end, you have to decide what is best for you.

Your parents have to live with themselves with their apparent lack of concern...is it possible that they are more concerned than you know? From what you say, this goes back a long time though, so it may well be time for you to just concentrate on your recovery and your wonderful, supportive husband. I always think about how it must be for those who have no-one at all...must be awful.

I do hope your pain abates soon and you can move on with or without your parents support.

andreae
Posts: 238
Joined: Sep 2003

Dear MJay,

I have been thinking about you a lot since you have not posted recently. I'm so sorry you are not getting the support you need and deserve. Let's face it, nobody but you knows what you need to do. Cutting out the negative energy needs to be done. Know we are here for you and support you 100%.

Lots of positive thoughts,
Andrea

jana11
Posts: 708
Joined: May 2004

MJay,
So sorry you have to deal with all this. I have to share... my husband and I decided my mother wasn't allowed to visit while I was on chemo or recovering from surgery. The last time she came to visit she was so mean to both me and my hubby. I know she was doing it because she was worried about me, but I needed to save my energy and strength for my own recovery.

Also, my best friend from college called one time in a year after my initial diagnosis and treatments. When she called again I told her I needed good friends around me and asked if she could be there because I was disappointed in her. She went nuts on me, telling me I had been disappointing her for years!!
I told my therapist all this and my therapist (also a cancer survivor) said most survivors encounter some selfish people. And you simply must get them out of your life.

My advice to you. Try to let them go. Maybe they don't know how to react with the cancer, but that doesn't help you. Right now, you need support, not excuses. Maybe later they can change and be there for you... but right now; take care of yourself and be thankful for all the good people in your life.

Cancer is such a beast. Some people rise to the challenge, others don't. You have risen. Enjoy each moment.
Sorry you have to live through this whole ordeal. jana

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

sometimes people just can't handle cancer..maybe it's their ignorance..or more likely the feeling of helplessness that comes with dealing with a cancer patient, but one thing that cancer does..it lets you know who your friends are, and usually brings you a whole set of new ones. The new ones are true ones.. Nanuk

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

sometimes people just can't handle cancer..maybe it's their ignorance..or more likely the feeling of helplessness that comes with dealing with a cancer patient, but one thing that cancer does..it lets you know who your friends are, and usually brings you a whole set of new ones. The new ones are true ones.. Nanuk

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

That really WAS worth saying twice, Bud!

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

MJay,
You can vent here any time you want. When I was first diagnosed, I cried for my mom who passed away a couple of years ago. She would have helped me through this. But I can relate to what you are saying, because I don't have the kind of relationship that I would like with my sister. She asks too many questions and tells people things that I do not want to share. I have not told her about my surgery on Friday. If I get through this without her finding out it will be a miracle.

Remember that we are here for you and know what you are going through.

Maureen

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

Mjay...Bud can say so much in such a short space.truly a man of wisdom!
OF course the others here in some ways have experienced exactly your situation and I think the advice all round is to make yourself the number one priority. If you read my "tsk, tsk," post you will see a little of my selfishness. But when I rang the cancer crisis line the young lady(oncology nurse) expressed the very same sentiments to me that you have heard here in these posts. You need to concentrate your energy on yourself to help with the healing process.
I am similar in some ways. My eldest son NEVER phoned Jen to ask how I was after surgery. Although I do contact him there is always that "rift" between us, most sadly caused by his wife. He NEVER rings us....I always have to ring him. Jen hopes he will evetually come round and tells me to cool it.(she knows it hurts me that he doesn't seem to care)
I really think that my cancer is too much for him to bear....he can't cope with it. Some friends reacted that way too. You have a loving husband Mjay...that is where your devotion comes second. For all my love for Jen..my nurse said to me today that if I cannot make MYSELF the number one priority.......how can I possibly achieve good health and remain that way...Jen needs to see me healthy. My nurse settled me down and had me thinking...her words had a lot of truth in them!!
Your parents to me may well be afraid to try and understand.
We both hope you can endure this pain that you have Mjay....I surely live it too in the hope that one day my son may see the light.
luv n huggs, kanga n Jen

scouty's picture
scouty
Posts: 1973
Joined: Apr 2004

MJay,

I can definitely relate to what you are saying and feeling. I too decided to stop chemo and my chances weren't near as good as yours were. I did it for 8 months and now that I have been off of it for 2 months, I do not regret my decision at all. I have testing this week and find out the results on Friday and am prepared for whatever that brings. One step at a time for me.

My brother (a surgeon) thinks I am crazy as does my mother. My response to both of them has been...YOU GO ON THE CHEMO DRUGS I WAS ON FOR 8 MONTHS AND THEN COME BACK AND TALK TO ME.

This is all about me and what I think is best for me, not them. I don't do things friverously anymore. If it doesn't really mean something to me, I just don't do it. That means not answering the phone sometimes (thank goodness for caller id).

Follow your heart and try to avoid the negative energies that are out there. I must admit that cancer has taught me more then I could ever imagined. What and who your real friends and loved ones are and so many other subtle things.

Stay strong and continue to move forward. You already played out all the pros and cons when you made your initial decision. Don't let others take you back to that hard time.

Lisa P.

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

Mjay,
As a nurse, I have always seen that illness can bring out the best in some people and the worst in others. A good friend of mine has always advised me to surround myself with people who share my concerns, not people who think only about what they need. Good advice in any situation.
My dad died of colon cancer 4 years ago, and my mom is slipping away a bit with Alzheimer's, so I have opted not to tell her about my cancer and surgery. At a time when we all long for comforting, it is so hard to not have parents to turn to. You do have the benefit of great support from your husband; keep surrouonding yourself with more people like him!
Only you can decide what is best for you; I would practice a line or two to use on those folks who insist on telling you their differing opinions, particulary when you do not care to hear it. You could borrow one of those teen-age lines like "What makes you think I care about your opinion?" or maybe something nicer like "Thanks for the input, but this is between my doctor and me" or "this is something I only discuss with those closest to me". I'm sure after hearing your resolve, they will eventually stop bringing it up.
Keep your focus and get back to that place of feeling good about your decision.
Wishing you the best, Judy

JKendall
Posts: 186
Joined: Nov 2004

Hi Mjay...I'm not going to repeat what everyone else has already said, and I agree with all of them.

You made a well-informed decision after lots of thought and consideration. And you felt good, "liberated," about it. That's a very positive indication that you should stick with your decision!!!!

Try not to mourn the fact that your parents have to be out of your life. YOU NEVER CLOSED THE DOOR ON THEM!!!! And I'll bet that the door is still open to them. But keep it on your terms.

You feel free to vent here anytime. God knows we've all gotten in our share of ranting.

I admire you and your husband for your courage.

We'd like to hear from your husband, too. Tell him it will do him more good than he thinks to talk here. I was embarrassed and skeptical at first. Everyone here has put me at ease and they all have helped me, for which I'll always be thankful.

Stay strong and take good care MJay.

Jimmy

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