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mom had long battle with squamous cell carcinoma now gone and i need to vent and need support

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 wished she had more time to spend but it wasnt meant to be. she said we will see each other again someday. Just wish that day was here every day!!

bany
Posts: 38
Joined: Jun 2008

hi hunpot, i am so very sorry for what you've been through. it must be so difficult for you, i have only been a part of this forum for a short time, but i see why you came here for support. i hesitate to give advice because i don't know your situation, but maybe you would consider sharing your grief with your husband and children? i know why you'd want to shelter them, but it's so natural to feel the way you do now and maybe they can help you feel less alone?

right now it will seem impossible for you to imagine, but the pain and grief does ease slowly over time. you are already doing the best thing i think you need to, not keep it all bottled up inside. i wish i had an answer for you, how to stop crying. i just wanted to tell you to try to have hope, that it gradually gets easier to cope.

elaine

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

thank you elaine for your response. My children are too young 5, 8, 13, 17. They wouldnt understand maybe my older son but hes got his own teenage issues :) Besides at that age they just say get over it thinks its not the end of the world.
My husband has been my rock for the past year without him i dont know how i would have managed so far (he wathched me take care of mom be gone for days on end and helped at home with kids plus worked his FT job. but i just feel like i am bothering him now and its gets to him that i wont "deal with it or get over it" I dont want to bother him anymore All he says is i need help it hurts him that i have to go through this i dont think he knows what to say or do anymore and that fact noone does. No doctor can help me just gonna give me meds to help me and take my money which i dont have to spend for them to tell me what i already now its life and just have to find a way to deal :)
but once i stop taking meds ill feel like this again. Meds are probably just a bandaid.
its weird you say it time sit gets easier"because in my final letter from mom she says dont be sad and cry for ling and in time it will get easier but it feels like its getting worse not easier :) Im just waiting for her to give me a sign when it will get easy :)

bany
Posts: 38
Joined: Jun 2008

i understand your reasons, my children are about that age too. and it is very hard to know what to say to someone who is greiving like you are. you feel like it's getting worse instead of better with time, but i feel that you're not giving yourself the time you need. when something like this happens, it takes a while for your brain to process it and it can easily take a few months for the impact to hit home. you're controlling yourself so tightly when you're not alone, i think it's natural for your feelings to come out when you are alone. don't be so hard on yourself that you need to get over this quickly, let yourself miss your mom and i think slowly it will get easier.

i'm not in the medical field, i just wanted to help give you hope, that in my experiences time really does make it less painful.

elaine

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I am so sorry you lost your mother. I am a 53 year old male with 3 daughters and I had cancer in 2003. I was told I would not live and remember thinking that I only wanted to see my daughters graduate from school. I was blessed with a second chance at life when my diagnosis changed. It seems to me that your whole life for the last year has revolved around your mothers sickness. When we are that involved with someone we love so much, it takes a while to get our life back. The phrase "move on" does not apply to cancer as there are always emotional issues and side effects to live with. I guess its just a fact of life that the more we love someone the more it hurts. My uncle recently lost his wife of 53 years. My uncle's remorse was so huge we didn't expect him to survive 2 weeks without her. But he put a picture of her on the kitchen table and makes daily trips to the cemetary to talk and read at her grave site. Its his way of dealing. And you will, over time find your own ways of dealing with the loss of your mother. The times that you are alone or see a reminder of her are going to be hard for a while. But there comes a time when we think of the love that was shared and we want to live those hopes and dreams that our parents had for us. As a parent you have those same hopes and dreams for your children. We can't bring back those we have lost and loved so much. But we can try to live the best life we can so they would be proud of us. There is no doubt your mother raised a caring, loving and giving daughter. That is quite a tribute to her life. She was quite special and so are you. God bless you Slickwilly

Christmas
Posts: 91
Joined: May 2005

I can sympathize with you. My mom died at age 58 twenty years ago. She was the rock of our family. She had breast cancer at 50. Soon after her 5 year check up, she found a lump on her collar bone. I still miss her. It's all right to be angry. The grieving process is different for everyone. The first year will be difficult. You will miss her on every holiday, her birthday, the anniversary of her death. The tears can flow at any time or memory. It's OK.

I think that I got through it by knowing how much my mother loved my children. She would want me to take very good care of them. So whenever I get in the dumps, I would focus on my children because I know that's what my mother would want me to do.

After 20 years, I am still in tears, as I write this. So don't be so hard on yourself. Talk about her to your family and other. It's painful, but it helps to focus on her wonderful qualities and to remember the good times you shared with her.

Give yourself time to get over the anger and the loss. I was angry that I didn't see the end coming, that I wasn't able to get her better care or treatment.

Please post again. We're here to listen.

paula002's picture
paula002
Posts: 29
Joined: Apr 2007

Hey hunpot,

So sorry abut your mom.
It´s good to vent and to cry. Things will get better, sometimes it just takes a little longer...
I find that in times of very stressful situations, it helps to talk to best friends and perhaps even see a psychologist.
Take good care and all the best....

Paula

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

Thank you all for your kind words and support and extra encouragement. Each day is a different day and brings different thoughts and emotions. So i am just trying to take each day as it comes and make the best of it. As one said Mom wouldnt want me to be sad and that is probably what keeps me going and not go into a deep depression. Live Love and Learn from this experience and see where it leads me. I have called a support group and wouldnt you know they never called me back after a week(surprising to say the least) the only one i liked form hospice was my mothers nurse she wa absolutley great everyone else form that facility i felt no compassion and willingness to help at many different times in my mothers care the only ones were the nurses. I should have known but im not giving up I do have doctors appointment and maybe they can give me some advice or another group. But this forum helps hearing many different options and suggestions and i try to tell others what happened as i was caregiver to maybe give relief to others who are a caregiver as well.
thank you all

joolivermesplay
Posts: 21
Joined: Oct 2008

Hi, I have recently joined this site , and you touched my heart with your letter about your mom , the cancer and what she went through was terrible for you all , and I know that Moms have a very special bond with their children , you will never get over losing her , but it will get easier for you as time goes by, I know you feel like there is a big void in your life now , but take it from someone who has been there , you will remember the good things about your mom as the hurting she went through fades from your memory.
My Husband is in his second go round with Squamous Cell Carcinoma , the first was in 2004 and it came back in Aug.2008 , he has had a real bad time , but we will take what we can get. You take the good memories of your mom and sis , and put the rest in Gods hands , God Bless you , Jo

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

jo thank you for your kind words i wish your husband luck with this i know people have to deal with such aterrible disease but i dont wish it open anyone. Its hard not having mom and i feel so alone without her days were easy but holidays came and it got hard again in time it will get better but ts just so hard .
God bless you and if you ever have questions about treatments or side effects with this i will try to help as i have beenthrough it all with mom.
take care
tracy

MinorJ's picture
MinorJ
Posts: 3
Joined: Jan 2009

I too suffered the loss of my Mom on November 22, 2008 to this awful disease. I'm so grateful for this blog to talk about it. I'd never heard of this disease until it shattered our family. My mom went through (9)surgeries. The last surgery was June of 2008 where she had major reconstructive facial surgery. She was unable to eat and lived off Ensure for the last six months of her life. I remember the last meal we had together before the surgery, she enjoyed some good 'ole Charleston battered fish. I miss Mom so badly. She died so peacefully, she just slept away in my Dad's arms. It was so quiet that we didn't know she was gone. She never gave up, I'm amazed at the strength she displayed through all of this. The Drs. told us on Monday, the cancer had spread to her brain and there was nothing more they could do for her....by Saturday morning at 7:30am, she'd passed away. My world has been turned upside down. I have no regrets, I did everything possible for my Mom. Now I'm struggling to find the strength to go on with her. It's still hard to believe she's gone. I have to pinch myself sometimes to be reminded this is really happening. This is all I can manage to get out right now....thank you in advance for your support.

bany
Posts: 38
Joined: Jun 2008

hi minorj, i'm so sorry you lost your mom. this disease is horrible, it has been so bad watching my dad go through this. with time it will get easier to cope, my heart goes out to you.

elaine

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

Minor J --
OHH my heart goes out to you, Its such a terrible thing to live without our mom. It took me about 3 months before i stopped having crying attacks i was so busy during holidays i didnt have time to cry now holidays are gone by i have been having them all over again.
I try to live each day for her to make her happy and say to myself she would want me to move on and do this but I still cannot believe she is gone and ask everyday WHY WHY WHY.. ill never get the answers and no matter what anyone says it cant bring her back and that is what i want so bad. I have no regrets I did EVERYTHING possible for her right to the end, even after i had to take care of things for her she left me a list what to do. Mom also died so peacefully and that is what she wanted she didnt want to suffer. My world is upside down as well ill NEVER be the same. We as daughters have to try and remember what our mothers taught us and to grieve and then be strong and go on and make them even more prouder then ever at leaset thats what tys to get me through the day.. I love your picture with your mom!!
stay stong and just remember she loved you and was proud of you and im sure was glad that you were able to fight with her and support her in her time of need. Nows shes at peace and someday we will be togther again!!
GOD BLESS

MinorJ's picture
MinorJ
Posts: 3
Joined: Jan 2009

God Bless You...you have such a heart for people. I'm thankful for your passion.

TNSgriffin
Posts: 1
Joined: Jan 2009

So sorry for your loss! Did your mom have squamous cell carcinoma of the parotid?

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

welcome i hope you get alot of good use out of this great site. MOM had SSC of the voicebox was a small lump about 2cc right on the top. They told us it was samll and she had good outcome, dont know what happened but she didnt do well with treatments none seemed to work , but each individual is different and reacts differntly. I wish you the best, if i can be of any assistance i will help in anyway some say SSC is pretty much the same no matter where.
GOD BLESS

MinorJ's picture
MinorJ
Posts: 3
Joined: Jan 2009

It's been five months now and I'm starting to sleep all night again. I'm dreading Mother's Day and especially Mom's birthday/anniversay in August. She and Dad were married the day before her birthday so every year we'd celebrate big...Oh my. I felt lost in the mall a couple of weeks ago when I realized that I didn't have to find that perfect suit for church that she'd already told me to buy for her Mother's day gift. Mom was funny that way.

Your words of encouragement helped me so much, I can't tell you enough how good I felt reading them. I feel stronger and getting through the pain, one day at a time.

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

it does take time. You will never get over the feeling of her gone but just find a way to deal and cope with it each day without dwelling. I love your picture you must get told you look like mom. This will be my first mothers day without mom also so i am also dreading it not sure how that day will be i have 4 lovely boys so maybe they willkeep my mind occupied but i know it will be hard day for me and i will just try to remember her and maybe do something in her memory and hopefully she will be happy and get me through the day with smiles may god bless you and get you through these hard times ahead.
tracy

MikeChris
Posts: 1
Joined: May 2009

My father is 73 years old was diagnosed with SCC of the tongue back in July of 2008. We got a 2nd opinion and decided to fight the cancer with Chemo & radiation. In January of 2009 the cancer cells had gone away.

April 1st of this year the Cancer returned with a vengeance along with excruciating pain. We were advised that surgery was our only option,21 days later my father underwent 18.5 hour surgery.

The doctor's removed my dads entire tongue and voice box and has a tracheotomy. They also used a piece of his chest muscle which is called a flap to put under his chin. Then and skin, muscles, & veins from his left forearm were used to make a tongue. They then used a skin graph from his left thigh to put on his left forearm. My dad also has a feed tube since August of 2008.

My dad had over 200 staples & stitch's and was hospitalized for 28 days we have been home for a little over a week. Since the surgery my dad now has diabetes (1) and high blood pressure. I am now his full time care giver.

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

I wish you and your dad well through out this stage. I hope and pray the cancer does not return this time and you are able to move on and be happy and healthy. Im sure it was a very long and hard surgery but after going through it with mom and they only removed some during surgery i am hopeful that because they did such and extensive surgery on your dad that he should be fine. Treat each day like no tomorrow it will take time and patience and alot of recovery but I will pray for you that its the end of the struggle and fight for him. Im sure there will be bad days ahead to follow with pain, and side effects, tell him to hang in there and it will get better and that you have each other and thats the most important. Mom was so hesitant about losing her voice but i still believe had she of had the voicebox removal she would be alive today as cancer couldnt come back in same spot. im not a doctor but i beleive that with all my heart and would advise anyone i could to do it all right away not bits and pieces. For now get him a nice dry erase board or lots of paper and writing utensils mom had boards with pictures on them to help at first and in time dad will speak again there are alot of devices out there to help so tell him keep his spirits up and fight and stay positive. Do the same for yourself, you will need to be string and healthy to take care of dad!! BEst wishes
your friend
tracy

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