Deep sadness crawling back

[LilyMir]

Hi friends,

Today was a special day. My boy had a tour of his new school with us mom and dad. He will start grade 1 this Sep. I was surprised with the sheer sadness that came over me, the 'feeling sorry for myself' kind, the 'why me', the 'what on earth just happened to my life' , the 'will I be here to see my boy graduate grade 1?' and 'what will happen to him if I die' kind.

My boy was so happy and we are thrilled to send him to in person classes this year though part of us remains so worried about all the diseases that school may bring home while I am still in active chemo then targeted therapy. We informed the school about my condition and a nice admin was I guess trying to relate and said something like... she really feels for me as her xx family member died from lung cancer. I did not know what to say. I thanked her...

Do you guys get into these dark zones periodically too? I could not stop crying all afternoon. I hide from my family and cry profusely. I don't want to feel or be like this but I cannot help it. This lung cancer is so miserable and I feel I cannot relate to "normal people" anymore. I am miserably failing the 'one day at a time' for sure.

[Scruboak]

Oh, Lily. I cried when each of my daughters transitioned to a new phase of their lives and that was way before I was diagnosed with lung cancer.  And yes, I too have bouts of feeling like I’m not normal and have difficulty connecting because of the cancer.  I’m learning to simply honor my grief and stop fighting it. Somehow it passes eventually. I feel for you. With love, Suzan

[Tom Galli]

Lily,

I do get into dark zones, even now--nearing 19 years after diagnosis. My memory of treatment and the recollection of foreboding are there as if the episode occurred yesterday. I can't forget; I choose not to allow the past to have power over my life. And, I need to be on constant guard to ensure I keep my cancer experience in a box. I open it to share a treatment tip or trick, then promptly close it up.

To be truthful, I didn't come to this "mindfulness zone" alone. During treatment, I was deeply depressed about my future and I buried my depression. I was a nutcase until my general practitioner intervened noting signs of my depression. Then therapy and medication lifted me from my dark space.

I know exactly how you feel. I bet most on this forum do also. You will never be a "normal person" but you can be a new normal person. People you meet in life who've not lived this mayhem are often well intended. But they do not understand the depth and breath of how lung cancer (most cancer, most lethal illnesses) affects you. Without understanding, a well meaning comment becomes a key to opening the dark space box. But you hold the key to lock it--turn the key.

You have the mental discipline to use Mathematics and Physics to solve problems. You also understand the limits of these sciences; they don't work on life or people problems. Take that understanding and apply it to put a box around the dark zone.

Stay the course.

Tom

 

[catlady91]

These feelings are completely normal. Everybody with cancer including loved ones of cancer suffers have those moments. I know I do. I try not to think too much into the future and focus on the present and the small things that I have to look forward to such as a holiday or going out for drinks and dinner with family. I guess it's different when you have young children and there are so many milestones far off in the future. 

Nobody can predict the future. What people expect from the future doesn't always happen. Somebody might be told that their cancer is terminal and they have months left to live but 20 years later they're still alive! 

I can understand it's very emotional to think about your children's futures. I sometimes get emotional about my mum as well especially if I hear somebody pass away from cancer. I think could that happen to my mum and I get depressed.

Every person and every cancer is different. Lung cancer has seen so many advances in treatment over the past decade. More than other cancers such as pancreatic cancer where there's been very little progress. I think you mentioned that you have NSCLC which is far easier to treat than small cell which is far more aggressive.

There's a lot of hope out there. I read an article in my mum's Polish magazine about lung cancer. In the article it said that lung cancer is no longer a death sentence and even with stage 4, survival is no longer measured in months and that even some people can live for more than 10 years.

Cancer is scary and unpredictable but try to stay positive. You will have moments like this where you worry and feel great sadness for the future but it's completely normal. Those feelings are perfectly valid but fears do not predict the future. Nobody can. The future is unpredictable and with it comes good possibilities. I hate when people ask the question "where do you see yourself in 5 years time". I have no idea! Life changes and plans and priorities change too. People want who try to predict the future and plan their futures clearly are afraid of uncertainty and losing control. Although unpredictability can be scary, it can also be exciting and full of unexpected things that turn out to be good. 

Try to focus on the present and things to look forward in the near future such as a holiday or a day out with your family. I also think it's important to have hope. Thanks to lung cancer treatment, more and more people are enjoying a future which wouldn't have been possible in the past. When my mum was diagnosed with stage 3B lung cancer in Feb 2020, the consultant said that 10 years ago such a diagnosis would have been very bad news and my mum would only really be given palliative care but now there's been such rapid advances in treatment that this diagnosis is no longer a death sentence.

2 and a half years later, my mum is alive, well and thriving and NED! She hasn't had any treatment since Jan 2021!  

Anything is possible xx

[Karen_L]

I wish I could say something to ease your grief. All I can say is that I know that same dark place, the same tears. 

A real lifesaver for me has been a weekly meeting with a counselor and some medication for depression. I deeply appreciate being able to sit with someone and talk about the stuff that would be too hard for my family, and to weep. I save all the "what if...." sentences to open up in that space. 

Today I decided to withdraw from a community activity, not because I feel sick, but because I feel a need to be mindful of the parameters I live within. I want my days to be full of who and what I love. There's not room for anything less. I think I made the right decision, for several reasons, but after I wrote my resignation email, I felt emotionally clobbered and teary. It happens every time I come face to face with a new aspect of my life with cancer. So I headed out on my bicycle for a little while. On one hand, I was riding along, marveling at the blue sky, the flowers, the people on the street, and on the other, I was just...so, so full of grief. That's just how it was today. It may be this way tomorrow, too. That's OK-- It takes my feelings a little while to catch up with my thinking. 

I will be keeping you in my heart tonight, and hoping tomorrow brings a little light for you. 

Karen

[Justin1970]

Hi lily 

I'm really sorry I've only just seen your post, I remember when my kids all grew up and went to different schools I was always worried about them growing up and then leaving home, I can only imagine how difficult it is for you doing this with cancer treatments and the stress of having this, I'm currently on holiday with my wife and three of my now grown up children and two grandchildren, it really is hard to get your head around everything relating to cancer I get down sometimes thinking about how life was before this, please stay strong,  everything will be alright thinking of you all take care Justin x 

[LilyMir]

Thanks everyone for sharing your heartfelt thoughts and your very kind support. We all seem to share similar burdens of this miserable disease and it means so much when I hear from you! I am feeling a bit better, trying to break the cycle of sadness but I may consider medication and will talk to my GP if this continues. One more chemo cycle to go next week so I will try going back to hope again, at least for now. Thanks again!

[Justin1970]

Hi lily 

I forgot to say to you I have been on antidepressants for a while but I'm now starting to come off of them so it's worth asking for something I think it helped me, hopefully after the last chemo you can start to feel better goodluck with everything 

All the best Take care Justin x