How to live and function in total fear of cancer

[Monica7]

Just looking for some coping skills on how to live with being dignosned with Stage 4 cancer that has also spread to my bones and brain. I thought I would have gotten beyond shock already and moved onto the fight or enjoying the gift of each day. Rather I just lay in bed in total fear of what is ahead for me as well as the sadness of leaving everyone behind. I can't live like this it in itself is literally killing me. I don't know how to handle this or get a better understanding of what lies ahead for my family and myself. Any advice would be appreciated thank you. 

Edited September 7, 2016 by Monica7
Stage 5 to 4 correction

[Tom Galli]

Monica,

Metastatic lung cancer beats coping to a pulp.  I didn't know there was a stage 5 but no matter, if it has spread it is beyond coping.  How does one live?  Now that is a better question.  You've identified the solution: "enjoying the gift of each day."  I tried for 3 years to cope and failed miserably.  Then I settled down to forgetting the past, declaring the future irrelevant and just trying to find a little joy in each day.  That is the way I live.  It is not a perfect life but my life before cancer wasn't perfect.  It is what I have and I'm satisfied with that.

This is a lot to digest so I'll keep my response short.  Feel free to tells more about your type of lung cancer and treatment so we can help.

Stay the course.

Tom

[FLgirl]

Monica7,

There are prayer lines out there. Unity Village will pray for you for 30 days after you call them. It is normally very positive and uplifting. You wouldn't have to believe their way to get comfort from the call and their prayer which is more like an affirmation. It is called Silent Unity.  Call: 1-800-NOW-PRAY (669-7729)

I don't know if it helps but you could be feeling something very normal there. I would think that depression makes a person feel that way and it would be normal to feel depressed with everything you have on your plate. Try to find 5 things you are thankful for everyday.

I also had not heard of stage 5

[Monica7]

1 hour ago, Monica7 said:

Just looking for some coping skills on how to live with being dignosned with Stage 4  cancer that has also spread to my bones and brain. I thought I would have gotten beyond shock already and moved onto the fight or enjoying the gift of each day. Rather I just lay in bed in total fear of what is ahead for me as well as the sadness of leaving everyone behind. I can't live like this it in itself is literally killing me. I don't know how to handle this or get a better understanding of what lies ahead for my family and myself. Any advice would be appreciated thank you  

5 minutes ago, FLgirl said:

 

 Thank you both for your replies Tom I understand what you are saying about the future but I don't understand forgetting the past? How did that help? I wish you had a mircle drug to get me to the point in life you are at.  I have even given up on a therapist because it just seems no one understands what it feels like to have created a problem yourself and now you are faced with leaving loved ones that need you behind. I'm just numb and scared  

 

[Tom Galli]

Monica,

Well I meant my past, my failed surgeries and treatments, the vast disappointment that for me was very hard to deal with.  I had to forget those expectations of treatment success, realize that cancer was persistent, and settle in for the long treatment process.  When you go one for five in treatments over 3 continuous years, one has a lot to forget.

I'm not sure I agree with the idea that I created a problem myself.  All that is necessary to get lung cancer is a pair of lungs.  Some 15 to 18-percent of those diagnosed are never smokers and genetic research has well established that cancer is a disease of our genes.  We all have every type of cancer in our genetic makeup.  What remains unestablished is what triggers cancer to start.  Yes, there is a strong correlation between my smoking and lung cancer but it is a strong correlation, not an absolute fact.

There are no miracle drugs.  Cancer or not, no one knows how much time we have in our lives.  Rather that worry about that, I choose to enjoy that which I have.  You have that power to choose also.

Stay the course.

Tom

[Cheryncp123]

Monica, I totally understand your fear. I too was diagnosed with stage 4 inoperable metastatic lung cancer and felt like my life was over. I was terrified of being on chemo and all the terrible side effects that I had heard about. Fortunately for me I tested positive for a gene mutation (ALK) and was started on an oral targeted therapy drug which I have handled very well for over 19 months now with no further progression of my disease. I still work, travel, spend time with family and friends and do all of the things I did before my diagnosis and there are even days now when I forget I have cancer. While cancer is still a very serious illness it is not the automatic death sentence that is was in the past. It is ok to cry and be afraid you would not be human if you didn't but don't allow yourself to stop living. Try to keep busy, join a support group, get out of the house and get a little fresh air and exercise even if it is just a walk in your yard, eat healthy and drink lots of water. These are things you do have control over. I am holding you in prayer, you are going to be alright.

[Monica7]

Cheryn thank you for the reply as well as keeping me in your prayers.  I suppose over time I will begin to see the light at the end of this long tunnel. My best wishes to you as well. You as well as the others give me hope. 

[Cheryncp123]

You are very welcome. I am pulling for you 

[Monica7]

Wow I have been on this site for 5 days straight. I didn't think it was possible to get so much insight and read so many encouraging stories. Tom Galli you are all over the map! I must say a job well done . Well only one more week of clinical trial testing and I am finally starting down the road of treatment! Not to bad after waiting 3 months. But that story is for another day lol take care everyone

[Martin]

Hi Monica,

i sstruggle with the same emotional roller coaster and haven't found the answer to it yet. I was waiting and hoping that I would have a mutation that would be targetable, but no such luck. I'm waiting for my screening to begin for the same clinical trial as you, so you are a little ahead of me in the time frame. Please let me know how the process has gone so far for you. I would love to stay in touch as we head down this road together. You are not alone.  I think about you and others who have posted on this site daily and I appreciate all of you. Tom, I also  want to thank you for what you do for so many of the individuals who post to this site. Please, let's all stay in touch and all the best for everyone. 

Martin

[Tom Galli]

Martin,

Unfortunately, the emotional roller coaster continues for me also despite more than 9 years of NED.  I still see my oncologist twice a year and knowing that and how persistent lung cancer can be keeps me on the roller coaster, disease-wise.

The road I choose is to realize that I can't get off the roller coaster (fear of recurrence) so I just try and find something in each day that brings me joy.  Joy is beyond happiness and it is the little things that bring the most.  Recent examples are: looking at the stars on a cloudless sky; watching my cat chase on a phantom chase through the house; admiring the wonderful produce at our town's farmer's market; and having a totally decadent and cholesterol-breaking hot wings and fries dinner.  I look for little things each day and when I realize I found one, I revel in it.

Thinking about my uncertain future, years ago, brought depression because of vast uncertainty.  My solution was to avoid thinking about it.  I can't control it, can't influence outcomes, and can't avoid consequences.  So, unless it is deliberate planning for a trip or a vacation, I don't think about what may happen next week, next month, or next year.  I don't always succeed but when I do, and I am getting better at it, and when I find something in the day that is joyful, I realize I am living the good life.

No one of us is alone.  Despite differences in our lung cancer recipe, we all travel nearly the same path.  There is treatment and then there is living.  Treatment is a living enabler and my challenge is to seek life meaningful to me despite treatment or fear of recurrence. 

Stay the course.

Tom

[Monica7]

Hi Martin

I hope things are going well for you. As I sit here at Dana waiting for my second treatment it made me wonder how you made out in the screening process. Hope everything went good please update when you have a moment. Best wishes 

[RuthieThomas]

Hi Monica! 

I can't add much to Tom & Martin's words of wisdom, but just wanted to let you know you are far from alone in feeling the way you do and that everyone who reads your words is pulling for you.  I hope you're feeling better after getting started with treatment...I know that feeling like I was doing something to "fight" helped my mindset.

I was diagnosed a little over a year ago w/stage IIIb inoperable adenocarcinoma & have had 1 recurrence since then. I was treated initially w/chemoradiation (no mutations for me, unfortunately), then surgery on my axillary lymph nodes & more radiation. I finished treatment in May or June and have noticed feeling sort of lost; like I'm not in warrior mode any longer and don't know how to feel!

I try awfully hard to follow Tom's advice, but I think we all have our times when we are just overwhelmed with sadness & helplessness. I allow myself to have a "pity party" every once in a while and get it over with. I hope you aren't blaming yourself for having this awful disease. As a former smoker, I understand the feeling, but non-smokers get this nasty stuff, too, and most smokers get away without it! My Mom & Dad both smoked: he died at age 46 of lung cancer & she died at 92 of heart failure still smoking like a chimney!

You've come to the right place...there is a lot of caring and wisdom to be found. I wish you the best; please keep up updated.

Ruthie

[Monica7]

Hello Ruthie

People like you are the reason I searched out a site like this. It's very difficult for me to respond seeing most of the time I am doing this on my phone. My pity party's consist of laying in bed for days at a time, which in turn upset me more because I am wasting precious time. I can't seem to get a grip around this yet. Thank you for your response it does help to know I'm not the only one and that I too will get thru this. Wishing you great things in life. Take care 

[Merilee]

We all understand...We all have been there and many of us still are..You will get through this..You can do this!!  

Edited October 15, 2016 by Merilee
Not clear enough

[Monica7]

Thank you Merilee ?

[LauraB]

Hi Monica

i can completely relate to your post as I write this on my phone from lying on my bed with deep anxiety. I find it so hard to stay in the present and not worry about my mortality sometimes. It really is a constant rollercoaster ride. It makes me less self critical to read your post and know that I'm not alone. I do manage to have good days when my fears are not hounding me and I can do stuff that distracts me from thinking about having cancer like playing with the puppies at the shelter where I volunteer or making jewelry. Sometimes when I hear on the news about people dying suddenly from accidents or violence, I realize that people without cancer also face death but they didn't expect it so soon.

[Susan Cornett]

Monica and Laura,

I absolutely understand where you are.  After I finished chemo, when we were waiting to check out my thyroid issue, I felt good.  Top of the world! I had a clean chest CT in early July.  But then I received news in early August that shook me to my core.  Mentally, I had started to give up.  I was worried about my husband and parents and who wanted what of my belongings.  I cried constantly, and realized I needed help.  I met a woman with Stage 4 melanoma with mets to her spine and she said "I ain't going out like that!"  I loved that attitude so I talked to my oncologist about the mental battle and he put me on anti-depressants.  It's not for everyone but I have had a much healthier approach to my daily life.  I got choked up a few weeks back while on vacation, but other than that, no crying jags.  No pity parties.  I'm making plans for the future.  I'm not going down without a fight.  I pray you both find some peace and inner butt-kicking strength.  

[Thesenora]

On 9/20/2016 at 10:47 AM, Tom Galli said:

Martin,

Unfortunately, the emotional roller coaster continues for me also despite more than 9 years of NED.  I still see my oncologist twice a year and knowing that and how persistent lung cancer can be keeps me on the roller coaster, disease-wise.

The road I choose is to realize that I can't get off the roller coaster (fear of recurrence) so I just try and find something in each day that brings me joy.  Joy is beyond happiness and it is the little things that bring the most.  Recent examples are: looking at the stars on a cloudless sky; watching my cat chase on a phantom chase through the house; admiring the wonderful produce at our town's farmer's market; and having a totally decadent and cholesterol-breaking hot wings and fries dinner.  I look for little things each day and when I realize I found one, I revel in it.

Thinking about my uncertain future, years ago, brought depression because of vast uncertainty.  My solution was to avoid thinking about it.  I can't control it, can't influence outcomes, and can't avoid consequences.  So, unless it is deliberate planning for a trip or a vacation, I don't think about what may happen next week, next month, or next year.  I don't always succeed but when I do, and I am getting better at it, and when I find something in the day that is joyful, I realize I am living the good life.

No one of us is alone.  Despite differences in our lung cancer recipe, we all travel nearly the same path.  There is treatment and then there is living.  Treatment is a living enabler and my challenge is to seek life meaningful to me despite treatment or fear of recurrence. 

Stay the course.

Tom

Thank you, Tom...

first time for me on this site...you have a great attitude and I love how you share your wisdom...oh my...yes...a rollercoaster indeed...

jayjay