How important this support forum is.

Phoebesnow
Phoebesnow Member Posts: 600 Member
in Anal Cancer #1

Happy New Year!

 

The reason I am taking the time to write this today is to stress how important this support system is to many.  Not just for anal cancer but a support for all as people face many kinds of adversity.  People will say they do not need this kind of mental help, or maybe they only need it for a little while.  I am a 30 year survivor from my first cancer.  I have to say I have worried over every little thing ever since, but it has usually been a pre-cancer or even a new cancer caught in the early stages. When I had the first diagnosis I should have sought help.  I suffered many years in silence worrying about reoccurrences.  By the time I was 25 I had cervical dysplasia grade 5 and a basal cell cancer.  I later had a very small mole of squamous cell removed in a biopsy from my neck, margins were clear.  I later had more squamous cell removed from my back and many precancerous lesions treated.  Then the grand finale Anal Cancer.  Finally I looked for information, and in finding the information I found this forum.  I found power and control in the information  that I learned.  I found strength in the fact that others had gone before me and were now leading decent lives.  I was not scared anymore, I was a warrior going off to do battle and I had a safe place to fall and lick my wounds when it was done.  I was so grateful for this forum, when I woke in the middle of the night nauseas, bloated and in pain and I would read the stories of those who had gone before me and in this I found strength.

 

Un fortunately my best friend of many years did not find this forum.  She had a double mastectomy in 1997.  She refused to seek help of any kind.  I offered to go with her but she was old school and could not accept any help.  She fell into a bottle and lost many friends including myself after 12 years.  I had poured my heart and soul into trying to lead her out of this mess but I could not do it alone.   She died of lack of support.

 

Rosemary took her life December 25 th 2014.  She was 62  years old. She had a beautiful family.  There were so many people at her funeral they were in the parking lot.  She was one of the best things that had ever happened to me.  

 

I am grateful for all of you.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    Phoebesnow

    I am so sorry for the loss of your dear friend, Rosemary.  That is heartbreaking.  May she finally be at peace.

    I  think what makes this support site and others like it so very important is that a lot of our family members and close friends have no clue how to help us--not at the time of diagnosis, during treatment, or the weeks, months or even years afterwards.  And through no fault of their own, they expect us to bounce back to our old selves the day after our last treatment.  Those same people would not expect a person who was in a fiery car crash to get up the next day and be fully recovered.  There is something about cancer that makes it totally different, but is a mystery to me.  There is a lot of comfort in being in touch with people who have experienced the exact same thing and truly understand both the physical and emotional aspects of dealing with cancer.  It's been over 5 1/2 years since I was diagnosed and I still have days when the anger about having cancer bubbles up to the surface.  However, coming here and realizing that so many others are where I was back then and are just starting out helps me realize how fortunate I am and that I need to pay it forward.  I'm glad you have found comfort here, as have I and so many others. 

  • Lorikat
    Lorikat Member Posts: 681 Member
    #3
    your timing for this post is

    your timing for this post is impeccable!  I have been wondering if I was worth all the trouble of check ups, scans etc.  I was told that unless I keep myself healthy at home I was wasting resources by going for ck ups and scans.  My husband feels it was said to MAKE me exercise etc because my cholesterol is so high(278) and my A1C is 6.3.  Which is not new....  No high blood pressure minimal blockage in arteries at 63 years old.

    Now we all know as cancer patients or survivors there is a quantity of guilt associated.  Why am I still alive when others aren't.  Why am I able to afford the best treatment and others aren't?  With this on top of it (and written into my report) I had just about truly given up.

    Again, I do try.  No, I don't lift weights or run marathons.  My feet either freeze or burn up.  Excess walking or running exacerbate the misery.  I DO Pilates.  

    then yesterday I had my 8 year old grandson with me at the store and someone offered us a sample of some sort of candy.  I told my boy he could try some if he wanted and he did. The lady tried again to get me to try the candy and he calmly stepped up and informed her: "my grandma said no thank you.  She is not being rude but it is not healthy for her".  8 years old and he had learned a lesson I didnot even realize I was teaching, which is standing up for others. How many OTHER lessons have my grandchildren learned just by listening to me?  

    Absolutely I still have a role to play in this world, and yes I'm worth it!

     

     

  • K8M
    K8M Member Posts: 55 Member
    #4
    Phoebesnow - have a huge

    Phoebesnow - have a huge virtual hug {{}}

    Your email brought tears to my eyes and your sentiments are so very true. I am in awe of everyone on this forum and the knowledge grown out of everyone's willingness to share the most personal information for the good of others. Long may it continue.

    If only it were possible to be as open in "real life" but what with employment and insurance risks as well as some of the social stigmas, society is to some extent forcing shame and fear on the vulnerable and the sick where there simply is no wrong doing. It can feel to some like being a product, moved from one conveyor belt marked "Useful", to another marked "Not so useful."

    We can only do what we can for eachother to reaffirm that beautiful things are never perfect. 

     

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #5
    Phoebesnow

    I'm so sorry for your loss. 

    Everyone - you all have said it so eloquately.  One "blessing" that came from this diagnosis is finding this board and all of you.  I can never say it enough, thank you to one and all.

     

  • eihtak
    eihtak Member Posts: 1,473 Member
    #6
    Phoebesnow.......

    I am so deeply sorry that you are suffering the loss of your friend.  Old school or new school this disease leads us all down a different path.  Some of us walk hand in hand (as with this forum) but others walk alone (by choice).  Feel comforted that you offered support, and that was all you could do.  Maybe Rosemary didn't die from lack of support, but side effects of cancer. 

    I too am forever grateful for this place of information, inspiration, encouragement, support, humor, and friendship. 

    I will pray that your friend is at peace, and yourself, her family, and friends are comforted in knowing she no longer is alone in her struggle.

  • Marynb
    Marynb Member Posts: 1,118
    #7
    Phoebe
    I am so sorry for your loss. Thank you for your post. I know the pain of losing a good friend, and my heart goes out to you. I am sure you did all that you could. I hope you find peace knowing that you were a good friend.
  • Marynb
    Marynb Member Posts: 1,118
    #8
    Lorikat said:

    your timing for this post is

    your timing for this post is impeccable!  I have been wondering if I was worth all the trouble of check ups, scans etc.  I was told that unless I keep myself healthy at home I was wasting resources by going for ck ups and scans.  My husband feels it was said to MAKE me exercise etc because my cholesterol is so high(278) and my A1C is 6.3.  Which is not new....  No high blood pressure minimal blockage in arteries at 63 years old.

    Now we all know as cancer patients or survivors there is a quantity of guilt associated.  Why am I still alive when others aren't.  Why am I able to afford the best treatment and others aren't?  With this on top of it (and written into my report) I had just about truly given up.

    Again, I do try.  No, I don't lift weights or run marathons.  My feet either freeze or burn up.  Excess walking or running exacerbate the misery.  I DO Pilates.  

    then yesterday I had my 8 year old grandson with me at the store and someone offered us a sample of some sort of candy.  I told my boy he could try some if he wanted and he did. The lady tried again to get me to try the candy and he calmly stepped up and informed her: "my grandma said no thank you.  She is not being rude but it is not healthy for her".  8 years old and he had learned a lesson I didnot even realize I was teaching, which is standing up for others. How many OTHER lessons have my grandchildren learned just by listening to me?  

    Absolutely I still have a role to play in this world, and yes I'm worth it!

     

     

    Lorikat
    Your grandson sounds precious! I do not have grandchildren, but I pray I live long enough to see that day. Grandmothers play a huge role in the lives of their grandchildren. You are blessed! Stay well!
  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    #9
    Marynb said:

    Phoebe
    I am so sorry for your loss. Thank you for your post. I know the pain of losing a good friend, and my heart goes out to you. I am sure you did all that you could. I hope you find peace knowing that you were a good friend.

    Thank you

    Thank you everyone for your wisdom and your support.

     

     

  • qv62
    qv62 Member Posts: 434 Member
    #10
    Phoebesnow

    so sorry to hear about the loss of your friend, may God hold her in the palm of his hand, blessings of peace and comfort to you, sending you sincere symapathy

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