Not OK — and that's OK

I am sorry to hear of your neighbor. Cancer is not a friend. I have not had stage 4, but stage 2 breast cancer with a BRCA2 mutation tossed in. Two years later i have MDS and a bone marrow transplant. I will not let myself worry either. I feel great 6 months after my transplant. My breast surgeon says she will follow me for lie with my mutation. My Hematologist says as a transplant patient, we are together for life. I tell myself, there is always some one there. Two spots on my lungs that have not changed, but they are being scanned every 3 months. Those never with cancer do not know that those that have had cancer, never forget.

It certainly is a never ending journey for a lot of us. I'm 19 months into having stage 4 metastasized to the bone. For the most part I accept this, figuring down the road it most likely will get worse. For now I just go about my daily life as best I can. When having a not so good day, I remind myself been here before and it will get better. I think the reminding myself is a big deal. Also there are times on this site where I read something someone says and it helps me so much. It's not easy for me having a conversation with someone about my condition but on here it's no problem, so many caring people helping each other. And one more thing, this makes me smile.. Someone's wife pointed out that although we are on the same boat, It's not the titanic. Best to all.

Yes, cancer changes lives. Unfortunately, our lives have endured many family members with cancer. My mom had breast cancer twice, my grandfather had lung cancer, my brother had melanoma, my other brother testicular and then colon cancer, my step mom breast cancer twice, my third step mom oral cancer and my three month old grandson had brain cancer. His was the most devastating and luckily he survived. But his young age really caused me to seriously revise my priorities and that was a good thing. He is now 28 and doing as well as possible. My cancer is liver cancer and since I was diagnosed with cirrhosis I have been thankful for every day and everyone in my life. We are only here for a short time in the big picture. When people are afraid to continue to be your friend because you are ill, it is not your fault. I think some are afraid and others care but don’t know how to act. I am not always sure how people will react but if it comes up I share and most people accept it as part of life. But..I am older, 71, and we old folks have to be more realistic about our mortality I think. I am sorry your friend is aloof but writing her a letter was a great idea. She may respond well or maybe not. But whichever is the case, you can go on with confidence knowing that you are living your journey and she or he will have theirs. Best of days to you.
We are so fortunate to have people here who “get it”.

I’m sorry to hear of the pain your are feeling due to your neighbors passing. Death makes us all feel so vulnerable because of our own cancer.
It’s definitely OK to have these feelings whether it’s sadness or acceptance. I have one week until my first CT scan from SBRT of the lung to find out the result’s of the treatment. I am nervous, anxious and scared. What I find unsettling is the reaction of family and friends. Like they have already forgotten I have cancer and had radiation and I don’t even have the results yet. At the same time I was diagnosed with lung cancer, I also had a heart angiogram and a brain lesion that is monitored monthly. I know if others can’t see the disease, it must not be important and yet I find these reactions unsettling. I’m trying to get on with life as normal, but finding it difficult.

A friend sent this to me and it pretty well sums up life with neuroendocrine csncer!

I understand how unsettling that must be for you. They don't live with the day to day of it. Someone once acted startled when I said something about having cancer and said "well it's gone, you don't have it anymore, they took it out. Right?!"
I realized it's never really gone for me, not after 3 different kinds. Not with ongoing side effects, life style affected by heart and kidney failure from sone of the cancer impacts. It's life altering, it's impactful for each of us differently.
But they, those not on the path, don't walk this walk.
I'm glad of that .
She meant well, cares and supports as much as she can.
but only someone on this path can truly understand. And that's okay.

Someone once posted unless the stage comes up in the conversation, most don't get it. Most people mean well,,they just don't know what to say. A coworker of mine, whom I hadn't seen in a while, asked how I'm doing, she knows I have cancer, when I replied good days and not so good days, her reply was, It came back? only thing I could say was it never left. This site lets us air things out and actually discuss with others who are going through the same thing, to me this is very helpful for me. It's a good thing but the only other person I talk to about my condition is my wife helping to make this site so good for me. I say a big thank you to all for being so caring. Best to all.

@northofnorthoftheborder
Where you have your medical treatments do you have access to a psychiatric or mental health specialist who can specialze in medications?

I have been a reader of your posts and did see you in a much better mental health stage. We are all human and when things happen like this it is completely normal for us to now being to worry about ourselves and every pain here and there a cancer.

I just had problems of pain in my shoulder and back. I immediately thought can it be cancer after all that proton radiation I had along with numerous CTs and tons of xrays. It was not, just arthritis.

I take a medication for anxiety. I was told I was going to need to take it forever. It does help and I am sure my mental outlook would not be what it is if did not take it. I mentioned this as there are many medications out there to help with depression and anxiety. DO NOT think there is anything negative to address mental health. It is just as important as physical health.

I am not sure in past posts and replies that you mentioned things you like doing. It can help get through times of depression and anxiety. I am 77 and now I see many many friends passing away and yes it makes me reflect back on my own physical help. But my doctors and specialist (including psychiatrist medication specialist) really help me deal with my up and down anxiety and depression.

I do hope you come back to MCC and talk to us. We are here to "HEAR" you. I am an introvert big time but have found MCC a way to speak out and feel comfortable talking about issues I would never do without MCC

Thank you for your reply. Yes, I did have access to a psychotherapist when I was in hospital. At home, I've been having good success with self-directed CBT (especially overcoming the mood swings from hormone therapy), but sometimes I think it's better to let myself be "not OK" for a couple of days, because that's part of life too.

The good part is that I know I'm confident better again soon, so I don't feel like I'll be trapped like this forever.

North, I am sorry for your loss, never an easy thing to deal with. I want to thank you for saying out loud that every day is not pleasant. We encourage each other to stay strong but the journey is so long that is sometimes hard to do. My "saying out loud" part is you have lifted me up more times then you know. Maybe not fair to you but I look forward to your posts, especially when you post a new topic, it always gives everyone a chance to participate in the conversation. I wish you the best on your continued journey. Best to all.