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When did your grieving start?

camul's picture
camul
Posts: 2140
Joined: Dec 2010

This was a question asked by a male member, about 70, in my in person support group.  Almost everyone looked at him like what are you talking about.  The facilitator jumped in with "when your loved on passes".  I said that I think he means for us!  Then the man said he has gone through all these emotions that fit the 5 stages of grieving, but he does not know when he will get to acceptance.  He was moved to my state, he lives in independant living in an apartment, but they also have a nursing home and a building for assisted living.  He had to give up his home, his car, having friends close by, and all that was familiar as this was the closest facility for him to get the treatment he needs.  He then asked me as I was one of 2 who knew what he was asking.

I said that for me the grieving started the day I was diagnosed with mets and knew my world as I knew it was changing and would never be the same.  I hit denial, isolation and depression, anger, sometimes acceptance and the gamit of feelings can be any of te above at any time, but it mostly hits me when there is something that I always did that I can no longer do!  Something as small as needing to put on socks when no one is here and I can't do it myself, or dropping keys and I can't bend down to pick them up, or wanting to go somewhere and knowing I can't.  It is also accepting that I have changed.  My outlook on life has changed, what I value most is still family and friends, but I do find that things that I use to enjoy are not as important to me as spending time with friends and family.  Longtime friends say that I have changed, (not to me but to others).  I agree I am not the same in someways.  I do not enjoy going out to dinner so much (food just does not taste good, and I am on a fixed income), and I decline more invitations to lunch and dinner.  I would rather rent a movie and watch it at home, where I use to enjoy going to a movie (it is uncomfortable to sit in the chair for 2 hours).  Just many little things, like taking a bath, carrying in groceries, travelling..... 

The third person who got it, is a 50 year old man who was diagnosed stage IV 3 years ago and since has been diagnosed with 4 additional 'new' cancers.  He has 2 boys 10 and 14.  He understood and started crying when he was talking about all of this.  Then he made a statement that really made me think.  He said he was having a really difficult time.  He felt he could not be whole until he got back to where he was before cancer.  His therapist told him that was where most of his depression was coming from.  That he is never going to be the same physically or mentally.  That you cannot be given this diagnosis and expect to to ever be the same.  He said at that point he realized that the way to live was to find what new things he could try to do and do them with his wife and kids and start new traditions and hobbies...  (he was really active in outdoor sports, now has trouble walking).  He said this was the turning point in living again.  He said he was beating himself up physically and mentally trying to be the 'strong man' and thinking that was his goal that he was loosing site of what was really important, and since then he is constantly trying new things with his family that he can do, and he feels alive again.  He will always miss being able to hunt, weight lift and run... but he once again has a very fulfilling life. 

I just wonder how many of have gone thru this grieving process and what we did to get through it.

 

Hugs,

Carol

McMarty's picture
McMarty
Posts: 202
Joined: Nov 2012

WOW!  Isn't that an interesting question?  What a wise man and quick of you to realize what the question really was.  For me, I think the grieving goes on all the time.  There is always something new I can't do, something new loss that makes me mad, sad and then I just have to accept and let it go.  I feel most like the 'strong man'  I have trouble with what I can't do and what I can't take my kids to do.  I knda get my balance and then off goes my hair again, or my leg goes numb or it feels like a bear is chewing on my shoulder for days as the cancer eats another bone.  I want to be the FUN MOM and I am just a little more pathetic every year.  URGGHH!!! I HATE THIS!  There should be what, denial, anger sadness and acceptance, and then going on with your life, but with this disease, I get 'halfway through' grieving and then poof a new thing to grieve.  I have to say, for me, the hardest part of the fight is WANTING to fight when going would be so much easier!  (Philippians 1:21-24) For to me, to live is Christ and to die is gain. But if I am to live on in the flesh, this will mean fruitful labor for me; and I do not know which to choose.  But I am hard-pressed from both directions, having the desire to depart and be with Christ, for that is very much better; yet to remain on in the flesh is more necessary for your sake.

I AM 'hard pressed from both sides'  fighting is hard, exhausting and painful - my kids need a mom, or do they just need to quit worrying when, and get on with their lives?  All questions too hard for me.

desertgirl947's picture
desertgirl947
Posts: 473
Joined: Oct 2012

I think that I will need to think about this a little bit.

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Carol,

 

This is an excellent question.  Every traumatic situation we have encountered in life, be it cancer or something else goes through those five stages of grief.  

 

Grieving, no I should be if I read the posts but I am not nor have I ever grieved about breast cancer even when it metastasize.   I had accepted what the rib mets in 2000 meant.  That this disease was terminal and in due time I would die .   NED for 8 years, gave me time to do my bucket lists.   I am so grateful to have had that opportunity that is not given to every one.  I wouldn't be able to go to all the places I had wanted to visit.   I don't have the stamina, shortness of breath issues, and the walking problems cause by medication along with my ankle PTTD.

 

I believe that I'm in some mini funk and that is a little of depression which is what I was writing about last night.  

 

When I was diagnose, I was to numb to grieve, as a divorcee with kids, I had to work.  Falling apart was not an option, so I kept moving forward, one foot at a time.  When it was over, I was elated.  Then life always hands you new problems to handle and the old was gone.  I always suspected my cellulitis was related to cancer but all the doctors, I encountered at the time, assured me that women who had lymph node dissections often had cellulitis.  The 2nd time, I was more angry at the oncologist for forgetting to give me radiation at diagnose, to be grieving.  Since breast cancer is so sneaky there was no way of proving the lack of radiation caused the tumor.  It could have been a cell left behind.   Had he given me radiation, there would not be a cell there left behind.  The tumor was there and I had to deal what was and not what if.  I was angry.

 

When the mets to ribs were found on the bone scan and 3D imaging, I felt justified.  That time we were not searching for cancer and it wasn't my oncologist who ordered the scan and imaging either.    I finally I had proof that my complaints had a cause.  I sure did let the radiologist and oncologist know that they had messed up big time.  Since Arimidex was working I was happy.  I still held a grudge against the radiologist oncologist for not listening and the oncologist I fired when he again made another mistake.  I had a new oncologist and she listened.  

 

Then when it returned as widespread pulmonary and pleura metastasis along with a pleura effusion in 2008, I wasn't surprise.   I knew it would, I just didn't know when.  I simply began to look forward, what needed to be done.  I had other medical issues at the time and they were causing me more problems than the cancer.  I was working and dealing with what I had while still living life.

 

A good reason is that working in a school system, over the years, I knew so many students that had very serious health issues, including cancer.   Some died, some had a hard battle to fight, and went on to do well.  Hard to feel sorry for yourself, when you observe young people fighting so hard to live.  

 

I always accepted grieving, as a normal part of life.  When someone you love dies, there is a grieving process.  To me the best things to do after a certain amount of time has elapsed, is to find other distractions and move on.  That is how I handled grief in the past.

 

Doris

Heatherbelle's picture
Heatherbelle
Posts: 1224
Joined: Jun 2010

I started grieving when my chemo and surgeries, treatment, ended, and i still am grieving almost 3 years later. I am accepting the things i can no longer do, accepting the physical, emotional, mental changes that i've gone through, and the fact that i will never be back to the same person i was before my diagnosis. But there is a big lack of understanding in some of the people closest to me that is a big part of the problem. In some ways im a better person now than i was before - more appreciative, kinder, more eager to try new things, developing new interests and hobbies - but some of the people closest to me dont see that and instead focus on why im "not back to normal yet". 

Thank you for sharing what the gentleman in your group shared. Very poignant.

hugs

heather

desertgirl947's picture
desertgirl947
Posts: 473
Joined: Oct 2012

I understand and get this.

Tinkerwoman1
Posts: 13
Joined: Feb 2013

Now that the treatments are over it's like everyone expects me to do the same things, the same way especially at work. Wel,l this cancer gave me a different outlook on what matters. Grateful for the job and the insurance but the pettiness is driving me crazy.

My family, who live in another area and don't see me often, don't get what I'm going through. My neighbors who see me every day understand and telll me to slow down and take it easy. Family thinks I should be able to jump in the car and visit whenever because it's too hard for them to haul the kids down to me. I agree with you, there's probably never going to be normal again because we see thing differently now.

Am I on track?

 

Tinkerwoman1
Posts: 13
Joined: Feb 2013

Now that the treatments are over it's like everyone expects me to do the same things, the same way especially at work. Well, this cancer gave me a different outlook on what matters. Grateful for the job and the insurance but the pettiness is driving me crazy.

My family, who live in another area and don't see me often, don't get what I've been through. My neighbors who see me every day understand and telll me to slow down and take it easy. 

I agree with you, there's probably never going to be normal again because we see things differently now.

Am I on track?

 

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I have had a discussion with my husband on more than one occassion as to how cancer stole not only my breasts but my life as well in so many ways. I am alive and I am so  thankful to be NED (hopefully for a long time) but everyday the aches and pains I have remind me that I am not who I was. Yes I was beginning to wear down some prior to BC, joint pain, etc. but now I have the neuropathy and fatigue added to it and there are days I just can't find energy to do much at all. My hubby thinks my aches and pains are because of my weight, and he is probably right. But I don't have the energy to go walking. I tried the treadmill, and I will continue to try but I just don't feel good.  This is not me! I hope that my "normal" is yet to be achieved. I will be a year out in May so I have a few months and maybe I will be in a better frame of mind then. I feel guilty that I am cancer free and whining about it but... I know some of you understand the feeling. I am grateful to God for answering my prayer to be cancer free! I just want to feel good too.

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

Thanks for sharing that story, Carol.  Mine began the day I heard I had cancer.  It was just too huge to grasp.  I know it is a progressive disease, whether fast or slow.  The limbo part feeds the grief for me. Hugs, Linda

Bella Luna's picture
Bella Luna
Posts: 1575
Joined: Aug 2009

Carol... this is a very good question.  Thanks for sharing your thoughts and story with us. 

I think I started grieving when I heard the words, "You have cancer."  I knew my world, as I knew it, had changed forever.  I didn't know what lay before me and I felt like I lost control.  It was a scary time and the uncertaintity of it all was something awful for me and my family. 

It's been over 3 years since that eventful day and there are times I still grieve.  I get depressed when we loss another Pink Sister or Brother to this awful disease.  I hate what it does to families and the children that are left behind.  Life before cancer was so different.  I was naive and carefree to an extent.  It's not to say my life was rosy.  Like anyone else, I had hardships but my prespective on life and the ones who are in it changed.  I have evolved as a person.

As for what I did to get out of it.  I decided to fight!  I was determined to get through it, no matter what.  With the help of God, my family/friends, and my good doctors, I made it through to the other side.  I know the future remains unknown, but for now, I chose to live and be a mother to my daughter and a wife to my husband.  I also started working at my daughter's former elementary school.  I am an educational aide and help kids from kinder-5th Grade.  I focus my attention on them and enjoy their honesty and varied personalities.

That is all. 

 

carkris's picture
carkris
Posts: 4529
Joined: Aug 2009

I definately greived when I got diagnosed. I grieved for the life that was gone. It is normal to go in and out of different phases. i feel i do that, I allow it.

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Still grieving.  The 'new normal' is not normal at all.  I have foobs, not breasts,

and tamoxifen feels like it is sucking

the life out of me.  I am quite literally drying up and, for the first time, feel like an old woman.  Do you ever stop grieving??

 

Chickadee

Tinkerwoman1
Posts: 13
Joined: Feb 2013

Had a lumpectomy (right breast), finished the 33 radiation treatmnets and that poor boob is so sad. It's a little dried up and smaller but I never had big breasts so the bra camouflages the difference pretty well. See the oncologist Mid-March for next steps. Tell me what the tamoxifen is doing to you?

I don't think I'm to grieving yet, angry that this cancer treatment stole 5 months of my life from diagnosis to last rad treatment. Don't have my energy back yet....actually it comes and goes.

Any information you can offer will be appreciated before I decide which med to take for the next 5 years.

 

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Dear Tinkerwoman1,

The statement:  angry that this cancer treatment stole 5 months of my life from diagnosis to last rad treatment 

Try to think of it as giving you a hopeful guarantee that you will never have another episode of breast cancer again.  That you will be in that 70% club of women who never have a recurrence and go on living a life that is cancer free.  

Depending on your age, if you are pre menopausal Tamoxifen is all there is unless you have your ovaries remove or take shots to shut them down.

If you are post menopausal, then you might be able to go on aromatase inhibitors.  All these drugs can be hard on the system.  I have done Tamoxifen (was the only hormonal available at the time) Arimidex, Femara, Faslodex at 250 mg 1 shot and then the FDA approved it as 2 shots at 500 mg, so I took it twice.  The cancer is active again, so I will know the next step hopefully on Monday (weather permitting more snow coming).   Most of them have hot flashes, some have weight gain, vaginal dryness, Aromatase Inhibitors have bone and joint pain.  

They are all doable.  We take them:

1) for those who are stages 0-3C  - to keep the cancer from returning

 2) for those like me - to buy time.

I would urge you to take what ever there is to hopefully keep you NED (no evidence of disease) for the rest of your life.

Best wishes to you,

Doris

telecomjd
Posts: 66
Joined: Jan 2013

I am dealing with things a day at a time.  I end up walling myself off a lot during treatment.  I know the other shoe is going to drop sometime, but right now, I just need to power through getting through chemo and exchange surgery.  Then on to Tamoxifen.  So, I am relying on my support group, network, counselor, etc.

My grief and guilt is the worst when I look at my poor husband.  This is not the detour that I had expected for our lives.  I feel like he is stuck with a mutilated, bald wife.  I feel like I am messing up our careers.  I also feel terrible for my family, who wants to be there, but is far away and feeling helpless.

Part of me realizes that I can't look back now.  Sure, things will never be the same.  Sure, I have learned a lot and am better positioned to seek out opportunities for self-improvement by examining my past.  But, if I dwell less on the sadness and more on my future life, I feel like I will be much better off.  Less stress.  Less sadness.  More chances for joy.

I miss my breasts, my hair, and my normal life.  But, I have the unique chance to build a new and better life.  I'm going to try to embrace that feeling.

Megan

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I guess I'm still greiving.  After the original dx, I hurtled from one treatment to the next as quickly as my docs would allow.  I wanted 'it' out!  I only had 4 months without treatments and with NED.  I think that was not enough time to process everything.  Then it was back to work and local recurrence/mets/treatments at the same time.   (I was literally in my 3rd day of training for a new job when I got the 'positive' news.)

I do wish I didn't have to deal with this, and I miss my before cancer life.  More than anything else, I greive for the energy I used to have.  I could go all day like the energizer bunny, now I have to 'rest' a couple times a day.  I still want to say 'yes' to everything...chaperone a field trip or a dance, sign up for a volunteer project, work all day then help with homework while cooking dinner, run to the store for last minute stuff...now I have to say 'no' to lots of that. 

I know there is no way to get my previous life back.  But I still don't know what my 'new' life looks or feels like.  I guess that's true for everyone, cancer or no cancer, because life keeps changing for all of us. 

Hugs,

Linda

Lynn Smith
Posts: 1265
Joined: Mar 2011

My  grieving was when my grandson elbowed me in my breast.Instant pain and it was the left breast that had  5 tumors in 42 years removed.It was a big worry with the blow. Pain made me go to the doctor after over a week.Doctor found no lumps but said we'll wait for your mammo in 4 months and see then,After the mammo I was told by the breast center a tumor was found.They weren't sure what ii was but it needed to be biopsied. It was biopsied. I was called to come in to see my doctor the next day. My doctor and another doctor were there to break the news. Shock but it was what I felt in the beginning. The blow!!!  

So the grieving started when my grandson elbowed me.I just knew.My instincts were right.After a dx of non invasive DCIS I felt somewhat better but still worry when it's time for annual mammos.I don't feel comfortable until the breast center says "Everything is fine.See you next year."Then I cry with relief. 

Also my family history played  a role with my fear/grieve.I was doomed.Mom, niece, me and my sister. Now the grieve and worry lies with my 4 granddaugthers.When will it stike again???

Lynn Smith

camul's picture
camul
Posts: 2140
Joined: Dec 2010

topic. I was so surprised that so many had no clue as to why he was asking. I too the first time around just kept going, working, being mom, etc. But the mets one really got me too.
I still have 'friends' and I am using this term lightly, who think I have changed! and I have and they just cant grasp when I look okay, why I cant do everything.. etc. So I mourn or grieve loss of friendships. Hearing everyones responses lets me know that grieving is a healthy, natural place to be in after all we have gone through, as long as I do not let it stop me from living!

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