any chance of a normal life to be led?

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any chance of a normal life to be led?

by Laceface on Wed Jun 24, 2015 12:31 AM

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Hi all, this forum board is somewhere I never in a million dreams ever thought I would be , but here we are... my husband was diagnosed with GBM May 9/15 and the world as we knew it has been turned on its head, as i am sure all of yours have been... i have a question, i have been reading so many of your posts regarding life and feeling "alone", is there anyone out there who have been able to maintain a "normal" life and relationship after diagnosis?  I have been looking, but so far, I only see dispair and it is scaring the s#%t out of me.  We want so very much to get thru the rad/chemo treatments (half way thru) and then just return to normal, am I crazy? is he crazy? can we do it?  My logical side tells me probably not, but I am hopeful... we have had an easy go of it thus far, until today that is, he has been in bed since last night and could not even go to his radiation today, our first "bad" day since being admited to hospital ... were we just lucky for the first three weeks of treatment?  I know we are only at the beginning, we have so many more obsticles i am sure to face, i am trying NOT to do too much research as it is very, very grim reading... I am rambling i know, just too many thoughts going thru my head...  

RE: any chance of a normal life to be led?

by veracityW on Wed Jun 24, 2015 07:05 PM

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On Jun 24, 2015 12:31 AM Laceface wrote:

Hi all, this forum board is somewhere I never in a million dreams ever thought I would be , but here we are... my husband was diagnosed with GBM May 9/15 and the world as we knew it has been turned on its head, as i am sure all of yours have been... i have a question, i have been reading so many of your posts regarding life and feeling "alone", is there anyone out there who have been able to maintain a "normal" life and relationship after diagnosis?  I have been looking, but so far, I only see dispair and it is scaring the s#%t out of me.  We want so very much to get thru the rad/chemo treatments (half way thru) and then just return to normal, am I crazy? is he crazy? can we do it?  My logical side tells me probably not, but I am hopeful... we have had an easy go of it thus far, until today that is, he has been in bed since last night and could not even go to his radiation today, our first "bad" day since being admited to hospital ... were we just lucky for the first three weeks of treatment?  I know we are only at the beginning, we have so many more obsticles i am sure to face, i am trying NOT to do too much research as it is very, very grim reading... I am rambling i know, just too many thoughts going thru my head...  

i think we have to get used to the "new normal" during and after a cancer diagnosis. my life changed a lot when i had lymphoma (in remission since Nov. 2013), but that was nothing compared to the changes i experienced and am experiencing since my huband's diagnosis of grade 3 anaplastic astrocytoma. after a series of seizures and a brain biopsy, he was only just given the diagnosis yesterday, and has not yet begun treatment.he is partly aphasic and has a lot of memory problems. i know perfectly well how debilitating treatment can be, and expect that we will go through some bad times. but it's worth it to save his life. it may feel as though you are alone, but you are not. right now i am treasuring each of the good moments, because they are what counts.

beijos

vw

RE: any chance of a normal life to be led?

by Bejbl on Wed Jun 24, 2015 07:07 PM

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Hello Laceface, I am new to this forum as well, I was recently diagnosed with rectal cancer this past March and yes my world was turned upside down just as you stated. It not only affected me but my whole family including husband, child, siblings and friends. The reason why I'm listing them is because they are the ones who are giving me strength, I honestly wanted to jump off the nearest bridge when I found out. Not only do I have rectal cancer and had to endure 6 weeks radiation and chemo but now I'm resting up to get strong enough to go through a rectal and some colon removal operation and having to deal with a colostomy bag in the end. I'm doing this because I want to live, you have to make sure your husband knows that you want him to live and I'm sure there are others around the both of you that feel the same way! Courage and love will get you through this. My husband and I are still going out to dinner when I feel up to it. Last week I went to the movies, you have to try and make your life normal you can't let this cancer rule your life! I still work, fortunatly my job permits me to work part time for now. You have to try and get your mind off it or it will rule your thoughts, humor works sometimes. Good luck with everything I am thinking about you! You are both not alone! Tracy

RE: any chance of a normal life to be led?

by cathypfarrer on Wed Jun 24, 2015 08:00 PM

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Hi Laceface.  My mom was diagnosed in February 2014  - with GBM, and given 3 - 18 months to live. She had surgery, came out very well, but the radiation and chemo were tough!  I have to say, the first 8 months was rough, but life has become much better for her.  My mom had decided to forego all treatment because she was so miserable.  Once she was off steroids ... radiation and done with her first chemo treatments, she started to feel better.  She now feels less tired, less depressed and more in control of her life.  Of course, she is not the same person that she was before she was diagnosed, but she is 76 years old, and still quite active and social.  She is now on Avastin, which we thought would be awful, but she tolerates it beautifully.  Quality of life is not what it was, but it is still good quality, and she is here with us both mentally and physically!  I asked her just yesterday as she was awaiting the results of another MRI, "Are you still overwhelmed by doctor appointments?"  She said, "No, it really isn't so bad anymore!"

I do believe that there is hope .... yes, it is a terrible disease, and I know that one of these days ... her cancer will begin to grow back when the Avastin no longer works, BUT, I am so thankful for the fact that she can travel to see grandchildren, go out with friends, read, be a wonderful companion to my dad, and still be my mom!  I did feel like I had already lost her the first year ... but now, I am simply enjoying the time that we have!!  

I hope that helps!!

Prayers for you and your husband!

Cathy

RE: any chance of a normal life to be led?

by npride on Wed Jun 24, 2015 08:03 PM

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Dear Laceface ,

The previous reference to "the new normal" is also my first thought.  I am a 35 year cancer survivor, facing round 3 of lymphoma.  I have led a very full and active life and pray to continue to do so.  But a cancer diagnosis does change things...in many ways for the better!  You are forced to look at the Big Picture and question your mortality, your lifestyle, your spirituality and so many things that can shape you into a better/stronger person in the long run! Hang in there!  A lot of the comments you see are from those going through the most difficult part of this crazy ride...those of us doing "well" and living "normal" lives are less likely to be posting because we''re too busy to have time to check and answer mail !!  I'm glad I have this newsletter in my mailbox..

God bless, take care!

RE: any chance of a normal life to be led?

by Carolyn53 on Wed Jun 24, 2015 08:16 PM

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I was diagnosed with Stage 3 rectal cancer in September of 2010 and in January of 2012 was "upgraded" to Stage 4.  I had an iliostomy for 9 months, multiple surgeries, chemotherapy for at least half of the time since diagnosis with all of the side effects that go with it.  But my husband and I are happy and in love and have a wonderful, loving relationship.  I cannot imagine why anyone could not.  No matter what you go through, if you love each other, intimacy only helps.

RE: any chance of a normal life to be led?

by AmberOctober on Wed Jun 24, 2015 08:33 PM

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Dear Laceface, i an so sorry you have to go thru this. First weeks are very overwhelming, both emotionally and physically, but you will adapt to changes. I was diagnosed with GBM 4 in February. If it wasn't for my 2-year-old daughter, I would put a bullet through my head. We now live a more or less normal life, just had to include appointments and doctors into it. Radiation and chemo weren't difficult at first for me, then it became harder. I am fatiqued a lot, but when my husband is not there to help with our baby, I have to do everyhting (sometimes days at a time when he has trips). When there is no choice left, you find strenght. We have no family here to help, but we do everyhting we used to: going out, swim in the pool, etc. Would i call it a normal life? Yes. Only i know how bad I feel at times, but i don't tell it to anyone. I try to do everything possible for my family and friends to feel like nothing has changed. When I was diagnosed, I swear I wanted to divorce my husband. He was a mess and made me feel like a mess too, when I needed all my strengh and support. It was horrible. So i stopped talking about death, faith, and started making plans for the summer, and in a week I saw a lot of chnges in his mood. He started to believe in the future. For me, it became very important to make plans for the future. We often say "In two years...", "Next summer..", etc. Otherwise we had nothing to talk about but my death. Plans make it sound like we live a normal life. Stay strong! Hugs.

RE: any chance of a normal life to be led?

by tumormanten on Wed Jun 24, 2015 08:40 PM

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My dad lived over 20 years after his first  cancer, I was twice told I would be lucky to be here in 5 years. It's been 12 years, and I know now I have a genetic inclination for cancer. Mom and dad stayed married, dad raised cattle, with an ostomy. I hunt and fish some, been on disability 10 years. There is a good chance for a lot of good memories, and days to come. Things will be different, and the cure can last the rest of your life. But it can be a good life ma'am. Avoid substance abuse, and self pity, and financial irresponsibility as they can ruin your life as well. Life isn't fair, it's life. My nephew died at 26, my step daughter at 36, with 2 preteen kids, both via cancer. Mom too, and my sister drank herself to death after her son passed. Just be thankfull and count your blessings as much as you can. Write a journal, or blog, vent. Best wishes.

RE: any chance of a normal life to be led? YES!

by tedwash on Wed Jun 24, 2015 09:25 PM

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My wife searched and searched for anything positive online when I fell to the beast (GBM). She failed at that time(10yrs ago).  So, she created her on URL and began detailing our life as survivor and care giver!  I can babble on about how to live a "normal life" but it would be better if you logged on and read about our adventures~~~both good and bad.  It is Livingwithbraincancer.com !  Check it out and you can blog back at us and we will be happy to reply.

RE: any chance of a normal life to be led?

by Blackfoot on Thu Jun 25, 2015 05:59 PM

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I agree with the lady who first responded.

We do return to a 'new' normal.  AND to be blunt, returning to you old normal probably will not happen.  Yes there are lots of patients with the same condition ... however, none of us are exactly alike.  Just as every person is different and unique, each of us responds to the treatments quite differently.  From my experience of 2 radiation treatments (15 days each) and 2 chemo treatments of 3 months each ... I believe I could have returned to the 'old' normal after the radiation treatments.  The chemo, for me, is what would prevent me from returning to my old self.  Chemo is probably what brings us to a 'new' normal, which is significantly less than our 'old selves'.

I am a 3 year survivor and am trying to find the 'new' normal.  I do hope your cancer doctors are more upfront with you than mine have been.  They are really vague and not willing to be upfront and honest about what to expect for side effects from the chemo.  This too is probably because how each of us respond to treatments, and trust me, we will have some very harsh responses to some treatments, and they seem to be very different each day chemo is administered.  

I have learned more about the chemo from the nurse who does the dosage than anyone else!  I have wanted to know what to expect, and I only get some very vague garblety-gook responses from the doctors.  The nurse is very inquisitive about how the last 2 weeks (I am given chemo every other week) were and each time something different comes up.  The 'new' generally is in addition to some of the more of the old responses.  Maybe it is just me, but the first complaints seem to be diminishing ... and that could be because I have accepted them as the 'new' norm, or the new symptoms are so much more pronounced, the 'old' is forgotten.

Enough of the negative.  Yes, you will find a 'new normal' and will have some quality of life.  Being with family and friends is so much more enriched the longer we are survivors!  If you do not have a bucket list, prepare one.  On a regular basis, live one of your bucket list items.  And Isincerely and strongly emphasize the live part of the statement!

Getting to the 'new normal' will take a while after your last chemo treatment, and you will get there!  Enjoy your life and the path you are on.  Make responsible choices about what you can and want to do, and find the joy in each of your choices!

William

 

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