Hi All,

I have been on this site many times over the past 9 months, but never officially became a member until today.

My mother passed away of oral cancer on April 22nd. She was first diagnosed with breast cancer at age 39, when I was 12 years old. Thankfully it was caught early enough... chemo, radiation, and surgery cured her for over 25 years. In 2007 it came back stage IV, however due to being hormone receptor positive, she was able to live relatively symptom free for the past 5 years. In August of 2011, she was diagnosed with early stage squamous cell oral cancer when she found a small patch in her mouth. Within 3 weeks it had tripled in size. It was removed through treatment. Surgeons were able to remove all of it, but unfortunately it had already invaded her lymph nodes. After healing from surgery, which included a trach and reconstruction from a graft taken from her arm and leg, my mother started 6 weeks of oral radiation along with 6 treatments of cistplatin (chemo). As radiation ravaged her mouth, she was forced to take a few breaks. She didn't give up though and fought her way through to the end. She finished treatments in mid January. Her doctors said protocol was to wait 12 weeks for her post-treatment pet scan. 6 weeks short of her pet scan appointment she began to feel extreme pain in her side, followed by a tumor on her rib. All downill from there... an ultrasound, chest x-ray, ct scan, and biopsy all led to an ill fate. Her ct scan results were delivered on March 23. Hospice was started 2 weeks later. She passed away on April 22nd. I didn't leave her side for a month. Hardest ordeal of my life. Hoping some of you can help me find my way through this grief and adjusting to a life without her

Aimlee, deepest condolences for your loss, I can only imagine how empty you feel. There are many wonderful folks who can help you grieve. It takes a long time to recover, and the people here will help you as long as it takes.

Aimlee, I am terribly sorry to read your story of your mother. Losing a parent is so difficult, as is any immediate family member's loss. Wishing you can remember all the good times, the happier, healthier times you shared together to help ease your pain. May she now rest in peace, free from all the pain.

Welcome to you, thank you for joining OCF. There are many members who have been thru the loss of a close relative to oral cancer who understand what you endured. I have lost both of my parents many years ago. It is so difficult learning to go on without their presence. I know in time you too will find your way.

Best wishes!

Hi there and welcome - I too lost my mom years ago and miss her still. I totally understwnd - it sounds lik your mom was a fighter. She obviously loved you and your family very much. Sometimes there's no rhyme or reason to OC - it can be highly aggressive.. Hugs to To you particularly with all you've been through - we're here... I'm not sure how religious you are but I truly believ your mom is with you still watching over you. Take care!!!

Oh Aimee reading your post was so heartbreaking. I lost my Mom 12 years ago and I still think about her every day. After my Mom died I got some grief counseling and it really helped. For me the first year was the hardest. Sending you lots of hugs...we are all here for you. I believe what Cheryl said, your Mom is your guardian Angel now and will always watch over you.

Take care,

Shelley

Aimlee, I'd saddened to read about your mom's passing. We're all here to help you in this very tough time. My thoughts are with you.

Aimlee,
I am so sorry to read about your Mom. I believe you were a great source of comfort to her as you were with her much of the time. Your gift of yourself, being with your Mom, is beautiful and humbling. There are many here, as you have already met some, who have lost loved ones, too. You are in compassionate company. Please come here often. The support we can offer will help you through this very sad time.

Hi Aimee: I'm so glad you became a member of this Forum. Please stay with us. Your Mom was an incredible person and with strength too great to describe. You, too, are a strong person, and have gone through so much. There are no words to describe the loss of your Mom, except to say that she is still with you and guarding over you. At times you will feel her closeness, and that will make you smile. I lost my son when he was in his 20s, and at times I can actually feel his presence and "smell" his soap smell from his showers (don't think I'm nuts - just you wait . Time will help, but will never heal her loss. Memories will keep the love for her very much alive. Hugs from julieann

Thank you all SO much for the incredibly warm welcome and words of support. You are all amazing people.

I too am so sorry for your loss. To battle so hard and lose the fight in the end stinks. I don't think there any specific words that could ease your grief, but hopefully it helps to know you have some extended family out here in cyber space!! The caregiver forum is a good place to find a few folks who have recently lost someone. That might be a good place to look at and read.
Thinking of you,
Kathy

I do understand what it is to lose a parent. I lost my dad nearly 20 years ago, quickly and unexpectedly, and lost my mother 8 years ago, with a longer illness, and both ways are hard to endure, but different.

So sorry.
Anne

Thank you, Kathy! You said it right... it is so hard to accept the defeat. I feel it for myself and I feel it for my mom. She hated accepting that the cancer she had fought most of her adult life was finally winning. To lose after all that is so disappointing. And what she went through in her last weeks was humbling and at times demeaning. Being aware enough to know you are wearing adult diapers (before she was catheterized) and having your daughter and husband wash your private areas was very hard for her. On top of having to accept that you are going to die within a matter of weeks was emotionally devastating... for her and for us.
I am trying to come to grips with a reality without her and seeking as much information as I can get to understand what happens to our relationship with her now.
Everyone's support here has been amazing. I am so grateful for finding such great people. You are all champions.

I say this often, yet it is truth and relevant on these forums.

Life is a journey with a beginning and an end for us, it's time spent with those we hold dear that make life so sweet, yet so painful when the journey ends, and a new journey begins.

For myself I hold the memory of those I hold dear with me and live my life in a way to honor them as I believe I will see them when my own journey in this life ends and I can be with them once more.

Because we know loss, we truly understand love, when we understand love we would understand what it is to struggle, when we understand struggle, we understand hope.

Keep to hope my dear, strength in numbers.

Eric

Thank you, Eric! No truer words have ever been spoken.

Hi, Aimlee.

I am so sorry to learn of your mother's passing. You must be an exceptional person to have been a source of love and support for your mother in all that she has endured. You have endured, as well. I hope that you are able to find some peace and comfort in the coming times. Grieving always takes longer than we want it to. The pain of loss ebbs and flows. I'm having trouble finding the words to comfort you. Just know that we are all here for you. You have come across an amazing group of people here. Please keep coming back.

I'm not sure if it's okay to recommend books here. This is a simple, comforting book about the grieving process. It was written by a nurse and her husband who run a hospice house. A friend of mine gave it to me when I lost my father. I have since pulled it out many times over the last 9 years and you can bet that I pulled it out when I was diagnosed with cancer. It is set up like a children's book, but it is appropriate for all ages. I have given to friends of mine when they have suffered a loss. It doesn't have to be death, either. It can be job loss, divorce, health problems, loss of status, pet loss...basically anything that would cause one to grieve. Here is the link if you like the information. It's also sold at Barnes & Noble in the children's section.

http://www.amazon.com/Tear-Soup-Pat..._1?ie=UTF8&qid=1336444260&sr=8-1

Take care of yourself,
Kerri

Thank you, Kerri. I have been doing a lot of research on what books to get, so this is very helpful. I will add it to my list.

Another really good book is "How to Survive the Loss of a Love". It's for any kind of loss, whether it's a person or a former way of life, etc. It's a very small book easy to read no matter what page you happen to land on and it's available at Amazon through OCF site:
http://www.amazon.com/?ie=UTF8&%2AVersion%2A=1&tag=oralcancfoun-20&link_code=hom&%2Aentries%2A=0
I like the original version which was smaller and have gotten several copies at the used book store over the years to give to friends and to students I had. It really helped me when I was going through divorce and it actually encouraged me to start my own survivor journal.

Losing our mothers is so hard....especially after a long a valiant fight. So many here feel your pain, having lost our mothers....some many years ago, yet there is always remains a twinge of pain in that loss. Time does help, but never fully takes it away. My mom taught me about living and life...and how to do it with grace and class...right up to the day she passed...she was an amazing woman.

Your memories will keep her always close to you...mothers are a true "part" of each of us...we live on taking them with us wherever we go.

p

That's what I am afraid of... that years down the road from now this wound is going to feel as open and raw as it does right now. I miss her so much and feel robbed. She is going to miss so much. I'm not married yet nor do I have any children so learning to accept that she is not going to be with me for those special moments is almost impossible.

Wounds do heal, Aimlee. Soon, you will be able to think more of all the wonderful things you associate with your Mother, and these memories will soften and soothe the wound of her passing. You have not lost her - she is close to you. You will be able to accept other special people in your life while still benefitting from all the special moments you have already had with your Mom. Be gentle and be patient with yourself and the healing will come.