When is it my turn

[Trying]

My battle is going on 2 years. Ive read about members getting to ring the bell, being told they are NED, and getting to leave scans behind. I am so very happy for them but cant help cry and wonder when its my turn. How i long to ring that bell......ii dream of it.
I have had 8 tumors disappear which is great. My situation is a bit complicated as i have a tumor on a valve and surgery previously wasnt possible. They needed them to shrink enough. I also had a chemo break and was off chemo again to heal from my emergency colostomy which could be making my journey longer. My dr says we can see a surgeon soon but im scared it will be bad news because its already been such a long journey. I am at a major cancer center. My oncologist is the head of the hospital and i have received other opinions. I just need encouragement, prayers and possibly someone who also had a long journey.

Thank you

Nicole

[ginabeewell]

I think the way you are feeling isn’t unusual - at least, I can relate. I have a “cancer buddy” who got diagnosed months and months after I did. We went through chemo and surgeries together - and then suddenly she was done! And I was still waiting to start another 4-6 months of chemo.

I was happy for her and told her so. Then I went to my bedroom and sobbed. It isn’t fair! I cried to my husband, who agreed.

Not long after, I found out I was done the same week she found out her cancer came back. : /

This disease is not a straight line. And I found I could always find someone who had it worse just as easily as someone who had it better. You just never know. Last night I ran into a woman whose husband seemed near death at our last conversation; I was shocked when she told me he had two stable scans in the past few months.

Personally in your shoes, I would push for a surgical consult. I know my oncologist was hoping my tumors would shrink more, but at a point it seemed like they were not going to change any further, and the surgeon outlined a two step plan to deal with a tumor that was inconveniently located. Some surgeons are more aggressive than others, and your oncologist might not know the surgeon’s POV.

[Trying]

I really appreciate your post. My oncologist had discussed seeing a surgeon after my next scan which is coming feb 2. Its nice to know im not the only one who has felt this way. Thank you so much.

[AmyG]

I'm so sorry you're struggling. I really hope you get your turn soon. I can totally understand where you're coming from and I think your feelings are 100% justified.

Keep going, you're doing fabulous!

[Punky44]

Just want to say thinking of you!

[Vana3]

I know how you feel...
I read others stories and see that this is a process and a fight. That is what I remind myself when I wonder if it will ever be my turn as well. Don’t lose hope! Like Amy said, you are doing great!

[stu]

It was a full two years before my mum has her large resection .

Hold on tight . You are nearly there .

Stu

[Trying]

Thank you Stu. So nice to hear from you.

[Mrned82]

I totally get u !!!!...I completely understand your feelings.....because I won't probably ring the bell but who knows ...cancer journey is a rollercoaster and nobody knows what is gonna happen...so keep pushing ..ask for surgery..more opinions..and don't think about the "bell".."Ned"...and etc....keep going...and in the meantime find something that makes u feel better .....for me is travelling!!..."Solo travel "..I travel between treatments, with the side effects of the chemo..but better feeling sick under the Eiffel Tower rather than my bed
I think at NED not like No evidence of disease but like NO Expiration Date ....
all the best !!!!

[boxhill]

Nicole, big hugs!

I think all of us are torn between frustration that we aren't proceeding like some people, and feeling that we have no "right" to complain because we are so much better off than others.

But we're all in this together. We support each other. And probably every single one of us silently feels grateful that we don't face the challenges that someone else has, while at the same time wishing that we could trade one side effect for another. (Note: if anyone would like to offload their loss of appetite on me, I'm here to take it! )

And as Ginabeewell says, it is a journey, and not a straight line. Always feel free to vent here.

[claudine]

I think at NED not like No evidence of disease but like NO Expiration Date ....

Ooo I love this! And your entire post, Mrned82. Trying, because my husband has a bone tumor, he will never be considered NED - unless it’s using the Mrned82 definition! The tumor will always be there because one cannot resect a vertebrae... And there will always be this worry that at some point it will become active again.
But, for him like for you it’s been two years (almost) since diagnosis and we’ve had so many wonderful days during those two years! And many more to come We’ve accepted the chronic nature of his cancer and plan to spend many, many years together, tumor be damned!
Hang in there, this forum is a great place to vent and share feelings and thoughts XXXXXXXXXX

[Trying]

You guys are great! All the positivity is so wonderful.

[JJH]

While you are waiting for your liver situation to improve, you could take some active steps to reduce the amount of stress that your liver is currently experiencing. For example:

• Some foods and beverages are hard on the liver and are best avoided by patients with liver mets:
  
  
  What Not To Eat When You Have Liver Metastases?
  https://www.epainassist.com/diet-and-nutrition/what-not-to-eat-when-you-have-liver-metastases
  .
• Some medications -- even common over-the-counter meds like Tylenol Extra Strength -- are hard on the liver and best avoided by patients with liver mets:
  
  
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=61855&p=490666#p490666
  .
• Some supplements are apparently incompatible with certain chemo regimens and are best avoided while on chemo, e.g., certain anti-oxidants and other items like grapefruit juice:
  
  
  https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52822&p=498169#p498169
  .
• Some oral hygiene products like colored mouthwashes, colored toothpaste, breath mints or chewing gum that contain artificial sweeteners like aspartame or artificial coloring like blue dye #1, are best avoided, or at least not swallowed
  
  
  Why There's Antifreeze in Your Toothpaste: The Chemistry of Household Ingredients
  https://images-na.ssl-images-amazon.com/images/I/51tsusNT33L._SX331_BO1,204,203,200_.jpg
  
  What is the Best Toothpaste That is Safe and Non Toxic?
  https://www.nontoxicreboot.com/best-toothpaste/
  .
• Some cosmetics, like certain lipsticks, end up in the GI tract and are hard on the liver and best avoided if you are trying to be kind to your liver.
  

  List of carcinogenic lipsticks
  1. (#103c), Stargazer Lipstick
  2. (#1005 Red Lizard), NARS Semi-Matte.:
  3. (#410 Volcanic), L’Oreal Colour Riche
  4. (#125 Pink Petal), Maybelline Color Sensational
  5. (#165 Tickled Pink), L’Oreal Colour Riche
  6. (#580 Ruby Remix), CoverGirl Queen Collection Vibrant Hues
  7. (#27 Mauvey), Sonia Kashuk Luxury Lip Color
  8. (#748 Heroic), L’Oreal Intensely Moisturizing Lipcolor
  9. (#025 Warm Brick), CoverGirl Continuous Color
  10. (#475 Mauve Me), Maybelline Color Sensation
  11. (#009 Fabulous Fig), Revlon Matte
  12. (#1009 Funny Face), NARS Semi-Matte
  13. (#375 Ripened Red), Revlon ColorStay
  14. (#558 Mad for Mauve), Avon Beyond Color
  15. (#530 Mauve Amour), L’Oreal Endless
  16. (#631 Luminous Pink), Revlon Super Lustrous Peal
  17. (Toffee), Burt’s Bees Lip Shimmer
  18. (#643 Satin Plum), Revlon Super Lustrous Peal
  Source: https://healthandlovepage.com/avoid-carcinogenic-lipstick/

In short, a patient with a compromised liver should be extra careful about what is consumed and what is eventually processed by the liver because the main objective is to be extra kind to the liver while it is under treatment so that it will heal faster and will allow curative liver surgery to take place eventually.

[Trying]

Thank you very much