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Remorse, can anyone else relate

coachmike
Posts: 155
Joined: Oct 2011

Hey Guys

 

Sorry I havent posted in a long time. I have been so busy traveling with work and such. All is good on the home front im 3 years in remission post Auto Stem Cell Transplant. Life is normal again, and for me normal is GREAT!

Tonight I have learned that a dear friend of mine who guided me during my chemo treatment has had a bad relapase and now has been given a very limited time line for life. I am devastated at such horrible news. It just makes me so damn mad! I hate this F**King Disease! It has not care nor compassion. She is such a wonderful person and has such a great heart for others. I sit here feeling guilty that a guy like me is lucky to be in remission meanwhile someone who has done so much is facing death right in the face. Can anyone relate?

Jeff148's picture
Jeff148
Posts: 184
Joined: Apr 2014

I have two co-workers that were very supportive to me last summer. They both recently found out they have cancer with low servival chances. My heart breaks. After being diagnosed with cancer and fighting for my life, I also am much more sensitive to stories in the news about beheadings, theater shootings etc. Cancer patients are fighting for their lives while others are taking lives without a thought. This world is messed up and getting worse. We can keep trying to spread love and make it better.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Jeff:  You are so correct Jeff, the moral rot in the world seems to be unstoppable.  But, as you note, each can do his or her part toward good.

Coach: I can so relate to your thoughts regarding your sick friends.  I was crushed basically to death in an auto crash years ago, but recovered. No one thought I would live; a pulmonologist went out from ICU to my mother one night, and said "I give him 30 minutes to live. IF he lives, he should have at least organic brain damage from no oxygen."  

During chemo I met so many dear people at infusion. Most are now deceased.... Some I heard directly about, some I saw in the paper months or years later. One dearest was Deborah, about 40.  She had had colorectal five years earlier, but thought she was cured. She said to me often, "If I had gone another six months, the doctors said I would have been in the clear."  She had young kids she wanted to see finish school.  She was in horrible shape one day, and sat up and looked at me and said, "I don't think I am dying. I feel I would know if I were. What do you think?"  It was the profoundest, weirdest, encounter I ever had in my life. I did not know what to say.  She died shortly thereafter.

Two years ago I was nursing an older friend with advanced prostate cancer. He had no local family, and got to where he could not drive.  I met a lot of my old medical staff, and the NP mostly gave me all of his info for his family, who were out of state.  He withered away and died in hospice, horrible. 

A current friend from church has very advanced, Stage 4 breast cancer. Her treatment plan is gruesome, unbelievable, and still has little chance of success.  So odd, because she has always been an upbeat, happy, trusing person.  She started out on chemo and surgery upbeat, but the disease has beat her down, and she is in withdrawl and depression now.

With my history, people who know me view me as a sort of oddity., somethng strange.  I just had my own cancerous prostate cut out, and am recovering ok.  But even the Enegizer Bunnie's battery has to run out some day.

I understand where you are coming from,

max

girliefighter's picture
girliefighter
Posts: 232
Joined: Mar 2013

I too can relate to this, all the time during my treatments I feel guilty that I still have my hair. I feel like because I never got super sick and didn't lose my hair that other cancer patients feel like I am a cheater. Going through without any visible sgns that you have cancer makes for a journey within itself as well. I do often question why I got to live and so many others did not, it is a terrible feeling. I have been going to chemo for almost 3 years now and have seen so many people come and sadly don't make it. I totally understand these feelings of guilt and remorse, you are not alone. Compassion is something that many lack unitl faced with their own mortality.

Carie

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

About 13 years ago a co-worker was diagnosed with multiple myeloma and given 3 -5 years. He lasted 11 years. During that time he saw other people that were given a cancer diagnosis with better chances than him and yet they didn't last as long. He did make comments about why they didn't make and he was still going. Early on we joked about how "only the good die young". This guy had a great sense of humor and started a laughing club to get people in our area to just laugh.

As you can tell I think about him a lot. I may not be able to sit and talk to him about what I am going through but remembering things he said about his cancer and the treatments have gotten me through a lot. We do't have the laughing club anymore but there are many chances to laugh in our group and I take advantage of them. All we can do is to stay as positive as possible and charge foward. 

 

Linda

DadysGirl
Posts: 346
Joined: Aug 2011

Mike, it all boils down to the life time breaths we are given by God. Loosing my wonderful Dad is still so very difficult. It's going to be 3 years, we would read your stem cell days with Him as He was going into one few days apart. He fought for 13 months only, from diagnosis when we were told people live 20+ years with the disease. Same diagnosis as yours. Remember Nathan hiccup he also had 13 months. Same hospital same nurses, same hospice care people I had to deal with few months after loosing my Dad for a friends Mom as they didn't speak the language. I was in the same hospital same hallways sometime same room my Dad was in, I was there everyday few hours, if in emergency room I was there the whole time. It was very difficult for me to be in the same space as I was with my Dad. We lost her 5 months after my Dad. We have another friend who is fighting late stage cancer now and she has a 6 year old girl. Now few days ago found out my husband's sister only 29 years old has breast cancer. Life is very difficult, some come out of it with health and some doesn't. Some have much more time here in this world with same diagnosis same stage everything and some doesn't. Some have immune deficiencies and some don't and yet immune deficiencies ones come out with flying colors while others don't. It just boils down to the time we have left and are given on this earth. My wonderful Dad always said at the hospital, I'm not here to lengthen my life, I'm here to live the life I have left as healthy as I possibly can. Life is sooo difficult, life is NEVER the same without our loved ones. There isn't a moment I don't think of Him or miss Him in everything I do even while cooking I wish He could be with us to eat the meals He loved. :((( its life and there isn't anything we can do accept help others in need, keep them in our prayers... for the ones we lost, we can pray for them and do good deeds on their behalf... that's all... wishing health for your friend and all others fighting this disease and other illnesses.

flyerette65
Posts: 65
Joined: Oct 2014

I am a cancer survivor.   I was diagnosed with UPSC, a very aggressive type of endometrial cancer, only 10-15% of women in the entire world get this diagnosis.  It acts just like ovarian cancer, spreads rapidly and metastisizes early.  I have had a few hiccups along the way, weird stress fractures (but not from osteoporosis) and now I'm going to have my rotator cuff repaired as it is completely torn. This will be my 3rd rotator cuff surgery and not related to cancer.  I hate cancer so much! Today, I went with a very good friend to get the results of her PET scan from her oncologist.  She kept telling me something is wrong, I just know it, so she called her oncologist and asked to have her CT scan moved up from December to September. The CT scan showed suspicious for recurrence of lymphoma and today she found out that her SUV levels were 8.4 and 7.2 in the axilla, she has hot spots in her abdomen and other hot spots in her neck.  An appointment with a surgeon tomorrow to schedule a biopsy.At original diagnosis back in 2007 she was Stage 4.  She did chemo, radiation and had to have a stem cell transplant. Today was shocking for both of us.  I couldn't help crying because I sort of know how she's feeling. Her oncologist talked about donor stem cell transplants but first we have to know what type of lymphoma we are dealing with. Three months ago I lost my mother to metatastic breast cancer.  She was stage 3C when diagnosed and had a mastectomy.  She went 11 years before recurrence to small intestine and had 11 inches of her small intestine removed.  A friend who was diagnosed with lung cancer just found out she has a couple of "hot spots" in one of her lungs.  My estranged husband (married less than 2 years) was diagnosed with prostate cancer but since he's behaving like an ostrich by burying his head in the sand and letting his daughter handle all the decisions, he can't tell me what stage he is or anything.  Great advice was given with regards to living with cancer.  Remember, we are all a statistic of one. No one knows whats going to happen to us down the road or when we're going to die, but we ARE going to die someday.  I was told after surgery and chemo by my then husband (and this is one of the reasons we're estranged) that I ran around too much and did too much--as in trying to live life to the fullest of my ability.  Don't let anyone take the joy or the peace out of your life! Do not expose yourself to negative people. You will live until you die.  You might as well try to enjoy it. Do whatever it takes to destress. Love to the fullest of your ability. Pray. Meditate, Do Yoga. Do Zumba. But above all LIVE! That's my mantra. I know I rambled a bit, that's what I do best!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

Flyerette,

Your story and insights are so amazing.  "...we are all a statistic of one."  That is a keeper, a comment I will not forget.

One goes from a person who knows nothing of cancer to a person who knows too much too fast. 

Seven years ago, I had a friend, who was a prostate cancer counselor, die of prostate cancer after a 13 year fight.  Then I was diagnosed with advanced, Stage 3 Hodgkins.  The family doctor who gave me my CT results was just out of residency, and was filling in for my doctor.  She had never told anyone they had cancer before, and started crying in the exam room.  I comforted her, and said it most likely was treatable and would be ok.  I said that I understood, and that medical practice would be more about successes than tragedies.  So bizarre !   She walked me across the hall to a general surgeon, past his office staff, and told the surgeon: "You have to schedule a biopsy on him, now !"  He obeyed her orders.  He opened my CT via e-mail, and told me, "I am not an oncologist, and only a biopsy can confirm, but you have lymphoma."  I asked how bad, and he blurted out, "Look ! It is everywhere !"

I got into complete remission from the Hodgkin's (CR, NED), and another friend with Stage 4 prostate got unable to get around, and I in essence became his caregiver, similiar to what you described with your friend (this was about three years ago).   He had also lived 13 years with prostate cancer, exhausting every treatment:  Surgery, radiation, hormonal therapy, chemo....  His whole experience with prostate was good, except the last six months.  I took him for chemo one day, and he was telling the infusion nurses, "Max here was a success ! "  I replied, "YOU are a success !  You have lived 13 years, mostly with no symptoms !"  The nurses seemed appreciative for my response.   He died in hospice. It was ugly, the last week.

A few months later, I was diagnosed with prostate cancer. Following surgical removal, I am apparantly ok.

Most recently, a close friend at church was diagnosed with Stage 4, Triple-negative breast cancer 10 months ago.  She did chemo, surgical removal, and went to MD Anderson to begin two months of radiation.  They did a scan at arrival, and told her it was hopeless, and she came home a few weeks ago.  She  has refused palliative chemo, and will go into hospice when necessary.  She wrote a ffew weeks ago that "she hoped to make it to Christmas."  She is so totally calm, so totally spiritual, even happy.  No bitterness, no regrets, and is only in her late 40s.   She is so vastly superior to me.  People are amazed at her, as they should be.  

I was crushed in an auto crash years ago, and my family was told several times over my first two weeks in ICU that "He will not live. He should die at any time."  I heard myself coded over the intercome one day, an odd thing.

"But above all LIVE!" -- your advice is as good as I have heard here.   As Yogi said, "It aint over till it's over."  People have a lot of good time left, even when they think not.

This song was written specifically for end-of-life time between loved ones. Several have told me they were deeply moved by it. Plus, Willie is amazing.

https://www.youtube.com/watch?v=S9nSgMwtkK0

max

 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I too can relate.  I read this post in August but was too raw to comment.  Still I fight to steady myself and keep the tears at bay while I attempt to type.

Last year I was diagnosis with FNHL stage 4 cancer.  Three weeks later my father was diagnosised MCNHL stage 4.  That was my needle off the record moment.  My journey was a secret and a dam nightmare.  Still is.  I put my treatment on hold to be with my dad.  I almost lost him then to sepsis after his first chemo.  I did my treatment under the radar, I did well.  I'm OK Just broken.  You see my remorse is living with my success because my dad lost his battle.  August first I had to let go.

I'm sorry I too can relate, my normal sassy fighting cancer personality is humbled beyond belief and I am broken.  

 

I used to to say everyday above ground is a blessing so to live like it......

Somedays are just harder than others.

DadysGirl
Posts: 346
Joined: Aug 2011

I'm so very sorry about you loosing your Dad. I lost my wonderful Dad a little over three years ago and life is never the same. Wishing you and your loved ones healthy lives.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Thank you for your kind words and I'm sorry for your loss too.

I'm ashamed at my weakness, the one thing cancer gave me is an inner strength I never knew existed.  The other day my strength ran away.  I have such guilt for my success in the wake of my fathers loss.  I feels numb, confused, empty and almost dizzy.  I should be thrilled my treatment was successful (hopefully I scan again in a few days) but I'm.....  Truthfully I don't know.

I do know the sun shines more on some days than on other days but everyday we have breath and breathe easy is a blessing to celebrate for sure.  

I wish the same for you, your loved ones and family.  May we all have healthy lives.  Thank you again.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

My one sister-in-law has a couple that are very dear friends. The wife is fighting NHL. She is as least 15 years older than me and has been having a hard time getting through the chemo. She was supposed to be doing Stem Cell by now but they can't get her through the chemo and she has had several blood and platelets transfusions. 

007 - your dad was probably more than 15 years older than you. You had "youth" on your side when it can to battling cancer. I was given an option to do Stem Cell now or just do Rituxan maintenance and see if that worked. I would have loved to just do the Rituxan but I knew that if I had get the Stem Cell 2 years from now, I don't know if I could get through it. I think of people like your dad and my sister-in-law's friend. I'd rather hit it hard now, when I can handle the treatment. Just remember you have your dad watching over you now and he knows what you did to help him get through his treatments. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

 I know you're right, it's just so hard. 

My father did not have youth but he wasn't that old either.  He did not have a good medical team, it's a very sad tale.   Had I not have been diagnosed with cancer before him I would not have understood the journey for the treatment as well as I do now.   I investigated and talked to doctors on his behalf, it was through that effort I got him on Imbrutnib.   He would have lost his battle much sooner.  His oncologist stopped everything after his first RCHOP.  It is my opinion because of his age, he should not have done CHOP.  His Oncologist then questioned imbrutbib...... I could continue but I'd rather not, I know my father could've been alive today had he had better medical advice.  I wanted my father to go to Houston and be seen at M.D. Anderson but he thought he was in good hands. 

I'm glad you're pro active, smart and a warrior.  Keep up the good/GREAT work!

DadysGirl
Posts: 346
Joined: Aug 2011

Hi Sweetie, you have to know that even if two exact same people are treated by same doctors, one may live and the other may pass away. We are here with number of breaths given to each of us. I don't know how old your Dad was, mine was 65 :((( He did RCHOP, RICE and stem cell transplant. He was such a strong postive individual. From diagnosis to end it was only 13 months. He always said I'm here to not extend the life I'm given but to live the life I have healthier. I can think of so many things they should have done differently with my Wonderful Dad, but if we are a believer we need to know that was the time He was given on earth. My Mom ran into a lady who was much older than my Dad, same diagnosis was treated by same group of doctors same hospital and she is still here. The pain is unbearable at times and life is never the same and will never be the same. We'll never enjoy the things we once enjoyed as there is a part of us that is always missing and we wish they were with us to share all aspects of life. It is very hard, there isn't a moment I don't think of my Wonderful Dad. I miss Him sooo very much and wish He was here with us so badly. :((( You should know that not many people would have been able to do what you have done. It shows how much you love and care for your Dad. 

Lots of love.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

thank you for your kindness, your words were a comfort to me.  Regrettably there is more to the story.  A week before I took him to a cancer institute, his oncologist said his cancer was at bay and not the cause of his weak, frail state.  Even told him that he didn't need to see him for four months.  He died less than a week and a half later.

In the hospital and with a new oncologist we learned his cancer was back and there was nothing anyone could do.  This is a very short version but you can understand.  The end result would be the same.  I have so many regrets, concerns, did I do the right thing?  I will tell you, I was scannEd on Friday and scare, my doctor was too.  In the machine, I laid terrified and didn't take any meds for the claustrophobic fears I have.  I confronted that fear head on but I wasn't alone.  I knew my father was there, that broke my heart for him to see me like that but it definitely helped. 

Thank You,

xoxo

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

You did what you felt you had to do at the time. Not sure what to think about dad's first oncologist. That is all past. Now you focus on yourself. I believe feeling that your dad is with you can only be a good thing. I hope and pray the results of your scan show no cancer. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

In the first moments of being diagnosed, I was grateful it wasn't one my children.  I recall it like it was yesterday, thrilled it  was me and not them.

My father would be the same way.  Ultimately in a clear mind, I know I needed to protect him.  Actually both parents, I know that now more than ever.  My mother is destroyed.

In that machine I felt my father, I didn't like the timing of things but I really needed him and he was there for me.  So weird but grateful none the less.

The best part, my scan was clean.

I was nervous, drove home alone.  I insisted to take on my fears and do this.  I was emotionally destroyed because the technician was  not hopeful and looked concerned.  Well by the time I drove into my driveway my oncologist called.  I have a problem with my spin due to a injury causing a stupid disease but it's not CANCER.  Such a weird phone call, my Doctor was puzzeled but understood.  He even laughed.  Pain I can handle, I know that.  I just need a break from cancer.  I'm good.

thank you.

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

I am so glad to hear the scan was clear. It is time to celebrate.

Hopefully one day you will feel it is the right time to tell you mom and other family members about your cancer and you can also tell them it is in remission.  I get the part about handling the pain. I am with you on that.   Smile

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

As soon as I learned the news I actually laid down (rare moment for me).  Mentally decompressed and regrouped.  Reclaiming my inner warrior.  I take nothing for granted anymore and savor everything.

I'm quite confident my family will never know.  As things were spiralling out of control, I did confide  in my cousin.  Her daughter has cancer too, I knew she would understand.  Heaven forbid, if anything goes bonkers, I need at least one person to know.  I went through the hardest part, there would be no benefit or reason too tell them now.  I was scared it came back but it didn't.

AMEN!

 

lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Funny you should mention cousin. It made me realize that although I told my immediate family, husband's relatives and our friends what I have been dealing, I have not told any of my cousins. I will admit that I am not as close to them as I once was, plus most of them are 10 or more years older than me. I think one reason I haven't told them is that many of them do not have an email address and those that might have one, I don't have it. Well they will be updated in our Christmas letter. 

In the last few months I have also learned the value of laying down, not sleeping, to relax. It seems like with the RICE treatment during the 5 - 6 days after I get home I found there were times my body wanted to be horizontal. Not sleep, just horizontal. 

Isn't it interesting the things we learn about those around us and ourselves as we go through tests, treatments and more tests. 

 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

When I say be good to yourself, that is one of the thing I'm referring to.  I'm quite guilty of doing things for others and not myself.  Being horizontal is therapeutic to me.  My Councelor told me, even insisted I take the adivan for the MRI because I'm claustrophobic and the drug was designed for someone like me under such circumstances.  She then explained the emotional hangout could last days????

I had no idea what she was talking about then, it wasn't until I received the news albeit great news.  I needed to process it all and release it.  It's important for me to note that I didn't have a book, computer, tablet or smart phone in reach.  Just me, laying down with my beloved fur family my dog and cat (trusted Fergie & Mittens).  I will say it wasn't as timely as I would hope but thankfully I just didn't rush myself to move on to a project.  " Key" for me and lessened learned, I reaped the benefits.

Regarding family, wow I could write a book.  You know my story, hiding my cancer from my parents (family and most of my world) then my dads diagnosis to passing was one of the most difficult circumstanes I've endured.  I watched some family members act incredibly bad, selfish and down right pathetic.  I have siblings who act like they're the only one who lost their dad.  Yet I was the only one who was there holding his  lovely hand at 2:33 in the morning as he took his first breath in Heaven.

Remorse mutates into many forms...

 

 

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