CSN Login
Members Online: 4

just wanted to share my story and needed to vent

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

didnt know where to turn to but am having some hard times without my mom best friend.

Sadly she died on Aug 18th from Squamous stage 4 cancer at the young age of 58.
In Feb 07 she was diagnosed with T2N2CMo stage IV cancer went through extensive radiation she was severly burned after 6 wks of treatments and we had to stop she ended up in hospital with a infection/rash 2nd degree burns. My mom went from weighing 160 down to 80lbs in less then a yr. She was always so sad at how she looked especially near the end. On oct 07 she had major surgery bilateral neck dissection with partial larnygectomy. She had tarche tube for about 2-3 months then. That was absolutely horrible i dont wish that surgey on anyone. The gtube feedings for 11months, she was able to eat by mouth for i think 2 months out of that time frame and it was the best thing for her at the time. The dry mouth and the sores, the 10 differnt medicines all got to be too much for her in the end. Mom was so worried about losing her voicebox that they told her they would do everything to save it. Well they only took out the top and said they were positive they got all the cancer after removing ALL lympth nodes. (i swear they should have removed it all and it never would of came back) Well in Jan 08 cancer came back and had metasisided to both lungs NSCLC. They were going to keep an eye because it was to soon to do treatments and she wasnt able to have anymore raditation to much scar tissue and she wasnt helaed yet form surgery. so in April 08 we tried taxotere chemo was having hard time breathing had to put trache tube back in (the edema(swelling) of her face got to be so bad at days that she couldnt ven open her eyes she looked like elephant woman. in June 08 pet showed chemo wasnt working stop all treatments. She was a fighter and tried really hard for me and my sister to survive and beat this.
My father died when we were just 10 yrs old so it was always mom and my sister.
My mom went through alot in just that short time It was alot of hospital stays back and forth doctors numerous treatments but I was always there with her right till the last morning. On Aug 15th she said she was tired and couldnt do it anymore was sick of cleaning trache and giving her meds. and wanted to go to nursing home she said she didnt want to be left alone anymore we tried to keep her at home we had schedule worked out with hospice and friends family but she thought she would feel better at a home so we checked her in she was fine no trouble at all just feeling weak but was able to walk talk, shower, go to bathroom etcc all by herself. She hated the way she looked because of the edema she stopped going out of the house. They say that was caused due to the surgery that her ciculation was poor. and the cancer was swelling inside cutting it off once it went up to brain and tried to come back donw it couldnt . Up until saturday the 16th noone knows what happend that day because sadly we wernt able to be there my kids had a race that day and my sister was at a wedding but moms bestfriend was suppose to go and she ended up in hospital with chest pains(prob due to stress of mom) so all we had to go by was her nurse and the staff at the home and they say she was fine but sunday they waited all day till my sister showed up around 2pm to tell her mom wasnt gonna make it through the night she better call family if she wanted. her oxygen was below 2 needless to say someone was sitting with mom since 7am and they waited till 2pm when daughter got there to say somethig (thats still bothers me) anyway we had all day sunday which she sat in her rocker and rocked she was scared to go to sleep always thought she wouldnt wake up they had her on morphine evry 15 min. she couldnt open her eyes but they say she new we were there. when we talked she would shake her head but she never opened her eyes and that hurts.. Finally we got her to get in bed at 2am (she was starting to lose color) as we thought shed be more comfy then slouched over in chair. I slept in that bed with her all night even tho i had about 2" of room but i wasnt leaving her alone. her little itty self 80 lbs and my 100 lbs couldnt even fit on a single bed but oh well. And in the morning me and my sister got her all cleaned up by ourselves changed and sponged. then her hospice nurse came in (she was awesome) still no open eyes swelling was real bad me on side with nurse shan on other side both holding her hands telling her that Deanne was there to check her and it was a matter of 2 minutes from time nurse came in till she sighlently passed. I guess im a little upset at all before and not being able to see her and her to tell me she new i was there but they say she new even though she didnt respond like i wanted. I know shes in a better place now and shes not suffering but its still hard very hard. One good thing is if she got to see herself the day of burial she would of been happy with a smile because swelling was gone and she looked beautiful!!!

So these past few days i think reality is setting in because i cant seem to stop crying myself to sleep and all day when kids are at school all i do is cry myself to sleep i cant get out of my slump so to say. Its weird because when hubby is home or kids at home I am fine I dont want them to see me upset so i hide it till im alone basically. I work nights and im fine at work just during the day and bedtime. People say to think of the good times but it dont help any because all i keep thinking is hows she not here and wont be!! When we found out after her major surgery cancer had come back my siter and I were able to take my mom on cruise which she never had been on before and thats what she wanted to do That was one of the best times we had and i am happy that we were able to do that and it makes me feel good when i think about it but when i look at pictures and video i CRY i can see how happy she was and then brings back memories till the last day when she didnt open her eyes, or was able to respond because she couldnt talk for the last 5 months of her life. maybe that makes it hard too who knows, I just have a bunch of unanswered questions and just plain SADD shes not here and cant seem to grasp it. I know she dont want me sad and i try so hard maybe thats why i was so strong through it all never let her see me but now i am falling apart now and just needed to let it out. SORRY for the long post but had to mention every single detail or at leaste most of them so you all would now what i have been through. Just needed to vent or read words of encouragment support

for others just stay strong and believe i can see on here that there are many fighters and survivors so it can be beat. NEVER EVER give up my mom fought a long hard battle just wish she would of survived longer but she is where she is now cant change it for her but maybe for others. I havent gone to doctor because noone can change how or what happened noone can make me feel better medicine cant make me feel better. But how do i do this? How do i stop crying when im alone?
Even though its so sad right now i hope to someday volunteer for the hospice that helped my mom as they did their best they were wonderful. For now i have to try to cope and go on and remember she didnt want me to be sad for long as she wrote in my "goodbye" letter she told me to remember all the times we had as she cherished them all and we will see each other again someday. Just wish that day was here every day!!

zahalene's picture
zahalene
Posts: 680
Joined: Nov 2005

I am glad you felt you could put it all down here where so many loving, understanding people would see every detail you related to us. Because we do CARE. Many of us have been through similar things with our moms (me 4 years ago) or other loved ones.
Now that you have posted it here I hope you can say to yourself, "OK SELF, it is all there in black and white and I do not have to carry it all around 24/7 any more, because all those people at csn who care are carrying a tiny bit here and there for me."
It's the way we do things here.
God bless.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Tracy, you may be surprised by the value of therapy, simply sitting down with someone on a regular basis to discuss how you feel. You might also consider coming into the Chatroom when it is up and running again, as we consider it the cheapest form of therapy around :).

Grief is a good thing for the psyche, I believe, and I would never suggest that you deny yourself your sorrow over this great loss. However, I would suggest this to you: realize that as long as you remain angry and hurt and frustrated, and perhaps even depressed, the cancer is continuing to adversely affect your family and you in particular, and even denying you the ability to respect your mom's last wishes, that you remember and cherish the good times.

Finally, I would advise that your own idea, about getting involved with hospice, may be just the thing for you. Perhaps doing something like that in your mom's memory will help you to move past the grieving and realize that good can come from just about anything if we put our hearts and minds to it.

Take care and best wishes to you and your loved ones,

Joe

RE's picture
RE
Posts: 4630
Joined: Feb 2004

First let me tell you how sorry I am for your loss, I understand your pain. I lost my mom to Breast/Ovarian cancer on 8/18/2000. I stayed by her side the last two weeks even though we rarely spoke, I knew she knew I was there. Trust me Mom's know when their children are nearby. When my mom passed I grabbed a journal and began to write down all the things I could remember about her so that I would not forget any of it. I wrote down how she smelled, what her favorite things were, funny stories of her life and times we spent together, things she did or said often, the foods she cooked and her favorite meals. It was comforting to me to recall these memories and to keep them safe so they are not forgotten. I have since shared them with her great grandchildren and her youngest grandchildren. I treasure these memories as I am sure you treasure your mom's memory.

Your emotions are so raw right now because it is so new to you, but remember Mom loves you and wants you to be happy too. Crying is okay and expected and trust me it will get better with time. Honor your mom by trying to think of her when she was well, recall times you had together shopping or dinning out Your mom was so much more than cancer; lets not allow cancer to steal your happy thoughts of her. It will be difficult at first but you can do it. Don't get me wrong I still cry occassionally, but now I smile or laugh at her memory and the recall of her soft hands and loving ways far more often then I cry.

Sending my motherly love your way and wishing you well! Hope to see more from you as you go through the loss of your mom. We are here for you and we do understand!

RE

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hello Hunpot,

I am so sorry for your loss. As I read through your experiences with your Mum I teared up, your feelings sounded so much like when I lost my Mum, I guess losing a loved one is very similar for many. It sure sounds like your Mum, and your family too, fought a brave battle with it all and it sure was a horrific one by the sounds of it. I lost my Grandmother many years back to the same type of cancer I had 20 years ago and witness her fading in much the same way your Mum did, it was so hard to watch.

One thing stands out to me though in your post and that is, to me anyways, that you really might well benefit from grief counselling. So many things you are experiencing are very common in the grief process and there are many stages of grief that you will go through but the trick is not to get caught in any one of the stages for too long. Some of the stages are denial, why?, depression/sadness, and of course just the plain loss of the close relationship you had with your Mum. My Mum passed away 6 years ago now and at nights sometimes and when I am alone I often say out loud 'I want my Mum back', just a little sentence that has a lot of meaning and you know what I mean by that I'm sure. My Mum was my best friend too and that is a double loss. My kids are grown and away now but it's wonderful that you have a young family to keep you going and hopefully a supportive husband and family as well.

I know I haven't probably said anything new here, that others on the site might be telling you as well, but I just wanted to let you know that you have one more person here, in me, who totally understands your grief because I have been there too, and time does make things better but a good grief counseller can really help as well, especially if you get stuck in a pattern that is interfering with your life, they really can. If you have a minister at your church you would be more comfortable with then that might work for you but you were talking about working with hospice later on and most hospice facilities have grief counsellers right there that I bet you could access. Think about it Hunpot, it may help more than you know. I know you said that you want to keep your grief away from your kids and husband but maybe you could also think about talking to your husband more about it too, if you think he would be open to that. If not then you should really deal with your grief and not just push it away and let a professional grief counseller help you through. By dealing with the counseller then you wouldn't have to involve anyone else, if that is the route you still would rather take.

And you have this site to help you, as you have already found through these posts, I'm sure. We have a chatroom too that is great but unfortunately doesn't seem to be up and running right now. Check in a few times over the next few days and weeks and drop by to say hello, a realtime chat can be good for you as well if you are feeling blue.

All the best Hunpot, and again I am so sorry for your loss. Think about the grief counsellor idea, it could make all the difference. Hugs and may God Bless you and yours.

maisiemay
Posts: 6
Joined: Nov 2008

I am so sorry to here all that, but it sounds so very much Like mine! My father fought lung cancer for 7 years the doctors said he wasn't evan In the medical books anymore. And one day three years ago My mother didn't feel well was catching everything, I got my brothers to help me take her to emergency room we were there 6 hours tell midnight for them to tells us the worst news we could of ever heard she had a tumor the size of a football between he liver and kidneys. I will NEVER forget her face looking at us three like I AM SO SORRY YOU KIDS...... She fought 9 months long and hard I took her to every appointment and Aug 2005 she lost her battle I thought I was going to die with her, I ACTUALLY ASKED GOD THE NIGHT SHE PASSED PLEASE DEAR GOD TAKE ME WITH HER, I NEED TO MAKE SURE SHE GETS TO HEAVEN ALRIGHT. You never forget how scared your parents look. I would bathe her feed her, many many 12 emergency room visits I can't even tell you, She had non- hodgkins, and just this past june 11, 2008 my father lost his battle, I took care of him they both use to say we are so sorry you have to take care of us. I WOULD SAY I WOULD DO IT ALL OVER TOMORROW JUST LET ME GET SOME SLEEP. I have two brothers that didn't help me its different with brothers! I am biopolar so was my dad we shared so much alike he was the ONLY PERSON that understood me. I haven't been able to get out of bed for weeks, I have older kids in college I thank god because I can't even take care of my self. Much less worry about anyone else. I feel so emotionally and physically gone worn out, and NO ONE WOULD KNOW THE PAIN OF LOOSING A PARENT TELL YOU DO. They are your rocks growing up you look up to them and now there under 100 lbs and you are pulling them off toilets and bathing them you become there parent..... I WOULDN'T HAVE WANTED ANYONE TAKE CARE OF THEM BUT ME... I miss them so bad I can't even tell you. The things they go through NO ONE SHOULD FOR WHAT? People ask me after seeing what they went through would you ever fight cancer I said I truly don't know? They are my HEROS I told them both and always well be! I am sorry for your pain I SO FEEL IT!!!!

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

maisiemay--
I can only imagine your feeling. Your post made me cry that you had to go through that twice, im not sure if I would EVER get through it. Dad has been gone for 25 yrs he died unexpectedly when i was 10 and that wasnt so painful being such a young girl. But with mom well we where two pees and a pod:)
To watch them suffer and see there face when they are told they have cancer is the most horrible sight in the world. To know they are fighting so hard for there kids is even worse. She would say im sorry you cant do this you got the kids and hubby and id say too bad YOUR my momma and you been here for me the past 35 yrs im not going anywhere you need me now and my family will be there later. BUt its your turn first.
I asked god the same thing the night before TAKE ME WITH HER guess he didnt want me :)

I get asked that question what would i do and you know its strange because i would want to fight for my kids but is it worth it in the end all the tests, hospital visits, surgery, side effects, pain and suffering etcc.... I wanted mom hear with me and maybe i was being selfish by watching her fight so hard and having hope she would make it but guess that didnt happen. Now is ay she should of just left it alone and lived her life happy. My motto now is "live life like no tomorrow and dont take days for granted"
Our parents will always be our heroes as we watched them live, learn and fight for survival now its our turn to live for them!!!
Alot of nice people have talked to me here and have suggested grief counseling and i think that may help you also seeing you went through it twice in such a short time and lost BOTH parents to such a horrible disease. you barely had time to grieve and acknowledge moms death and whammy dad got sick YOU have been through aterrible ordeal if you lived near me i would suggest lunch so we could meet and then go to a session together. GOD BLESS YOU i hope you find comfort maybe your parents and mine our friends now:)

terato's picture
terato
Posts: 384
Joined: Apr 2002

hunpot,

I strongly believe in both professional counseling and support groups. Not only am I a cancer survivor, but I lost both parents to long-term illnesses and my only sibling to suicide. Without really good professional counseling and support groups meeting on a regular basis, I don't know what I would have done. After my brother's suicide, I was a total basket case, until I sought the assistance of a local mental health clinic and was directed to a grief support group. They became safe harbors for my emotions, helping me to understand my own sense of vulnerability, resulting from never having fully dealt with my cancer experience.

My family has never really left me, their pictures and belongings surround me. They are with me, giving me the strength to live alone and deal with issues on my own, but, I guess, not REALLY alone. I have to believe that that god has good things in store for my future or I would be where my family is today.

Your mom is not gone either, she has merely made her transition to a pain and trouble-free existence and is with you with every thought. Your very life gave her's meaning and you are her continued reward.

Love and Courage!

Rick

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

Rick
guess my situation isnt as complexed as yours.
I know there are alot of people out ther suffering and grieveing and dealing and it is terrible knowing this is happening in our world today. There has to be a cure some where, somehow. I am still so angry that this happens not only to me but to others especially reading your story. Two parents and yourself cancer OUCHHHH. and to be the only survivor left I give you the most bravest and couragous award to be able to fight and survive is a blessing you have angels watching you (you must of been a bad young boy they dont want you to join them yet) im trying to make light im sorry.
I plan on seeking counseling and hopefully someday help out others so they dont have to go through what i did.
Best wishes to you and GOD BLESS

terato's picture
terato
Posts: 384
Joined: Apr 2002

hunpot,

Ironically, if I had not had cancer, I probably would have been unable to cope with my brother's death. Cancer forced me to come to terms with my own mortality. When I was first diagnosed, I really thought I would be the first of the four of us to die, but turned out to be the only one remaining. God must have something in mind for my future that I have yet to discover, at least this is what I tell myself during those tired lonely moments. I don't believe that "God laughs when we make plans", I believe He says, "Just keep your options open!" On Sunday, I learned that a little girl in my parish is being treated for cancer. I sent her parents a contribution along with a personal note to their daughter informing her of my own 26-year survival and my belief that she will be saying the same thing 26 years from now. Perhaps, I remain alive to provide hope to the "newbees"? I don't really know, but I'll only find out if I stay alive.

Each day is a new beginning and a new sense of hope!

Love and Courage!

Rick

maisiemay
Posts: 6
Joined: Nov 2008

Thank you for the kind words, Where do you live? I wish we were closer... You know you mentioned about going to get help and I feel the same way It is just hard to get in there, yet I want to talk about loosing both of my parents I know it will help me but yet I don't want to talk about! You right I didn't have enough time to recover from mom, but yet I knew my father wasn't going to make it I think the waiting it the HARDEST PART, and watching them shrink to nothing and all!!!!! The two people in your life that are suppose to be the strongest, and yet there under 100lbs. I HATE CANCER we have so much of it in my family my grandma on my dads side and his sister had breast cancer, My mothers father died from skin cancer, my mothers mom had some kind of cancer. You know I think what I got from taking care of mom and dad and going to appointments cherishing YOUR HEALTH!!!!!!!! You can't buy your health. From that moment I started going to get a yearly check up because all my doctors say yes you have a lot of cancer in your family but it is the luck of the draw! You may never get any kind of cancer but the sooner we would catch it the better you are. My brothers I have two which are real great supporters with me I am so much more attached to it all because I WATCHED EVERY SINGLE DAY THEM DIEING AND SLIPPING AWAY, They didn't yet at times oh Michele you are over reacting. I called them when mom was really sick and said its coming to the end you all need to come! They say are you sure? We all three think we of coarse we will be dieing from cancer. I so feel everything you felt taking care of your mother and your best friend! I have a 21 year old that surprised us with getting married I wanted to call my mom and cry to here, everyone says she is there. I KNOW SHE IS AND SHE SEES ME BUT I WANT TO SEE HER! and I have a 19 year old son my younger son, and a daughter that is graduating this year my son graduated last year thank GOD dad was strong enough to go my husband and I paid for him to go to florida he loved the beach I WILL FOREVER CHERISH THAT TRIP WITH HIM! I would lay there on the beach and look at him enjoying it knowing this wasn't going to be forever!!!!! I just am glad they saw my children! They will miss out on being great parents. You find it is so bitter sweet it was at my sons graduation. I was so happy but sad wishing mom could be there. It is very hard on the kids too they miss grandpa and grandma. But you know when you get sad I don't know if you have a picture of her sick but that is all I have to do is look at a picture of them sick and I THANK GOD THEY ARN'T IN THAT PAIN ANYMORE IT HELPS! They are all bran new again CANCER FREE FINALLY!!!!!!!!!!!!!!!!!! I just wanted to write you back you were so gracious to write me back. When I use to go to the appointments with mom and dad I told mom once I felt so sad for the people that were receiving chemo and had NO ONE THERE FOR THEM! I said mom these people need to know they have some support and I think when I get strong enough and through my pain, I would love to provide some kind of service for people that needed rides and give them a sack lunch and just be a friend I WOULD CALL IT JOHN AND JEAN'S ANGEL NETWORK! I hope you are good..

hunpot's picture
hunpot
Posts: 90
Joined: Nov 2008

I like it. Im sure when you are ready to do such a network that american cancer would point you in the right directions and also im sure the oncology dept social worker wouod be willing to help you get started as well. I ll help in anyway i can when you are ready.
It is hard to watch people who dont have the support because us as caregivers see what individuals have to endure that is why someday i plan on volunteering with hospice because i know I needed help with momma and it was a struggle for me being her primary caregiver so if i could help others and make it easier for them. i know momma would want me to do that. Her biggest fear was being alone and I dont want othes to feel they are alone. As soon as im done grieving i am going to try it out but I just hope i have the strength and courage to do that. I am a very sensitive person and to have to watch someone go through this cancer is going to be extremly hard but I am willing to try and hopefully help others in need. And have to keep in mind they are cancer free now and not struggling anymore.
I live in massachusetts. you? Talk soon and take care.
tracy

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network