Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Posted by Merry, Volunteer Mentor @merpreb, Dec 6, 2018

It’s extremely difficult to face the fact of recurring cancers. After treatments we try and get away from it all and live our life. Then along comes another CT scan or PET scan and POW, you have to face another cancer. My reaction was developing PTSD.

You can read what I wrote in my blog: https://my20yearscancer.com/blog/

How do we cope? How do we react? What do we do?
How have you all reacted to another cancer? Or the possibility of another one? Has your “already compromised” mental health been able to deal with it? How? Or not?

@hopeful33250

Good to hear from you, @sakota, I do hope you find some answers for your tremors. I so appreciate your positive attitude. It goes a long way in adjusting to difficulties!
I look forward to hearing from you again. Will you post with an update as you get test results?

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Hi teresa. Thanks for welcome. I missed talking to all of you and getting the encouragement needed. I go to mayo the middle of nov for my scan. And had the eeg done here in sioux falls. Have to stay positive no matter what. Otherwise you are letting the cancer etc win. Right people????

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@sakota

Hi merr and everyone else. Its been awhile since i,ve been in here. So far summer hasnt been too. Bad. I go for another ct scan at mayo. The last one there were some changes in my left lung so need to find out about that. My copd has been pretty good or as much as it can be. Now the last thing. Ever since last dec been having these tremors every so often. Had a mri which was good a eeg short one which was good. So no answers. Last week i did a 72 hour eeg so am now waiting on a report on that. It is so hard when you know something is not right and have to sit around waiting and waiting. All you want is answers so you know what you have to do and to keep on surviving. The good lord is with us all and will help us get thru what we need too. Prayers to all of you. .

Ps. And excuse my language. But humor and friends go a long way in dealing with this shit.

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@sakota– Hi Joan, it's so good to hear from you. Your language is just fine. I know just what you mean about knowing something is wrong and are stumped as to what it its. What kind of a doctor are you seeing for tremors. I hope that it's a neurologist! I think that we have spoken about this before. Where do you have tremors? Could it simply be essential tremors? My neurologist suggested that I had it. Here are a couple of sites that discuss this.
https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534
https://www.mayoclinic.org/diseases-conditions/essential-tremor/multimedia/essential-tremor-test/img-20177820
Has a doctor reviewed all of your medicines so that any culprits could be taken of of your list?
Have you spoken with @hopeful33250 as she has essential tremors too.?

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@sakota

Hi teresa. Thanks for welcome. I missed talking to all of you and getting the encouragement needed. I go to mayo the middle of nov for my scan. And had the eeg done here in sioux falls. Have to stay positive no matter what. Otherwise you are letting the cancer etc win. Right people????

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@sakota– Absolutely Joan. It does help for sure.I have to wait until early December for my next CT scan. I do not like to wait, at all, for anything! lol Did your doctor suggest what the changes in your left lung were? Or what it looked like?

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@merpreb

@sakota– Hi Joan, it's so good to hear from you. Your language is just fine. I know just what you mean about knowing something is wrong and are stumped as to what it its. What kind of a doctor are you seeing for tremors. I hope that it's a neurologist! I think that we have spoken about this before. Where do you have tremors? Could it simply be essential tremors? My neurologist suggested that I had it. Here are a couple of sites that discuss this.
https://www.mayoclinic.org/diseases-conditions/essential-tremor/symptoms-causes/syc-20350534
https://www.mayoclinic.org/diseases-conditions/essential-tremor/multimedia/essential-tremor-test/img-20177820
Has a doctor reviewed all of your medicines so that any culprits could be taken of of your list?
Have you spoken with @hopeful33250 as she has essential tremors too.?

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Hi merry it’s good to see you too. I was to a neurologist at mayo and they couldn’t find anything. They suggested I could do the 72 hour study so just had that done here. No the essential tremors were never mentioned but anxiety was mentioned. So will see what happens when I get the results. Meds have been checked. Mri was done had a short eeg at mayo. But nothing showed up.
Here it is sept. And I am not looking forward to winter. I still keep busy with my sewing and signed up for an online class for photo shop. Of course my three great grands are so full of fun and happiness. They are the best medicine around.

Best wishes. Merry

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@sakota– Joan keep me posted please!

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Yesterday I had a bone marrow biopsy, done by a medical professional whose technique made the whole procedure very bearable, with no sedation nor "twilight sleep". Laying there with a pressure bandage on, recovering, and speaking with the pathology tech who prepared the slides, it came to me that I am now dealing with my fourth cancer. Malignant melanoma, squamous cell skin cancer, cervical cancer in situ, and now Non-Hodgkins Lymphoma. While I wait for the most recent results, to be handed down on 10/4, my mental state fluctuates. Wanting to be proactive in the care plan. Wondering "why me" I have so much I want to do. Waiting for all the facts to sleeve it all together to create the best future possible [I also have a rare kidney disease that may or may not be related]. Knowing that this community of Mayo Connect is my support. Honored to be here, hoping to make a difference.
Ginger

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@gingerw – Ginger my heart just did a nose dive with your news. Why me, the universal cry is never answered but if feels great to scram it out! You have certainly had your fill of being challenged so I hope that the challenge god will go somewhere new, forever. You are so strong to continue to be a support to me and I'm sure that I can speak for a lot of us when I say this.
I will hold my breath until 10/4 when you will hopefully know more with relief!. I hope that your healing from your biopsy will bring you safely to Mayo meet up later next month. xxoo

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@azkidney57

This issue of learning to live with a possible cancer recurrence is a very difficult one for me right now. I have read and been given much advise. Each person needs to figure out what will work best. Although I am cancer free right now I may not be in the near future. I have scans coming up in a month and I am worried about them. Worry doesn’t help I need to change my “worry” into something constructive. I find that keeping busy, hobbies, spending time with family/ friends, helps a great deal. I make “deals” with myself and give myself “worry breaks”. Like I tell myself that the coming weekend I will forget the cancer , or try to, and concentrate on doing something fun. Writing things down is helpful. I literally write down all my fears in a journal I now keep. That way I can put the cancer in it’s place and try to “control it” by writing things down. I don’t want cancer to be in “control” of my life! We don’t know what the future may bring but we have a good amount of control on the “now” moments in our lives.

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@azkidney57 So many people feel anxious about upcoming test and test results. In fact, it's been coined as the term "scanxiety," a term likely started by a cancer patient. There is a discussion dedicated to how to cope in the Cancer: Managing Symptoms group here:

– Coping with anxiety while waiting https://connect.mayoclinic.org/discussion/coping-with-anxiety-while-waiting/

AZKidney: Living the "now" moments can really help with anxiety. I hope you'll share your tips in the discussion linked above. Or if you prefer, start a new discussion called Scanxiety.

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@azkidney57

This issue of learning to live with a possible cancer recurrence is a very difficult one for me right now. I have read and been given much advise. Each person needs to figure out what will work best. Although I am cancer free right now I may not be in the near future. I have scans coming up in a month and I am worried about them. Worry doesn’t help I need to change my “worry” into something constructive. I find that keeping busy, hobbies, spending time with family/ friends, helps a great deal. I make “deals” with myself and give myself “worry breaks”. Like I tell myself that the coming weekend I will forget the cancer , or try to, and concentrate on doing something fun. Writing things down is helpful. I literally write down all my fears in a journal I now keep. That way I can put the cancer in it’s place and try to “control it” by writing things down. I don’t want cancer to be in “control” of my life! We don’t know what the future may bring but we have a good amount of control on the “now” moments in our lives.

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@azkidney57 – Good afternoon. You are so lucky to be cancer free right now! Scanxiety is every cancer patient's bane to carry, but I am so glad that we get it. Imagine that there were no follow up scans to help catch cancer early! Being mindful actually does help, exercise, the whole bit. I allow myself to worry. Having cancer is no holiday. I have to feel everything to go from one stage of having cancer to another and then start all over again when I get another cancerous lung nodule. I've been doing this for over 22 years and for me it doesn't get easier. I have multifocal adenocarcinoma of the lungs. I'm carrying around maybe 4 cancerous lesions but won't know if any of them will be treated until early December, 6 months after my last CT scan. Writing about it here and in my blog https://my20yearscancer.com/, certainly helps.
I wish doctors would keep all of their opinions to them self. All doctors worry about metastasis. So do patients. We can manage our cancer reactions by tending to what is the most important for us to tend to to help ourselves on an even keel. Early AM waking hours are the hardest to handle. Everything is quiet and there is a sense of isolation. Can you read or write to feel less isolated> Do you have family at home?
Has you doctor given you reading materials about your cancer, or has your team of doctors?

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@merpreb

@gingerw – Ginger my heart just did a nose dive with your news. Why me, the universal cry is never answered but if feels great to scram it out! You have certainly had your fill of being challenged so I hope that the challenge god will go somewhere new, forever. You are so strong to continue to be a support to me and I'm sure that I can speak for a lot of us when I say this.
I will hold my breath until 10/4 when you will hopefully know more with relief!. I hope that your healing from your biopsy will bring you safely to Mayo meet up later next month. xxoo

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@merpreb By golly, if you can hold your breath that long, I certainly bow to you LOL. I will be journaling my thoughts, and doing some sewing to create lap robes for the infusion center there at the cancer institute. I believe in being of service, and channeling my anxiety and nervousness into creative things fills a need in me. My mind says "it is what it is, let's get the results and diagnosis so we can tackle it." I told my oncologist, "I want to address this, and be as great a patient to you as you are as a doctor to me." I am sad that my husband will not be with me when I get the results, because he is not really understanding everything. He will be 800+ miles away. I know that I have been given this row to hoe as the saying goes, for a reason.
Ginger

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@merpreb

@azkidney57 – Good afternoon. You are so lucky to be cancer free right now! Scanxiety is every cancer patient's bane to carry, but I am so glad that we get it. Imagine that there were no follow up scans to help catch cancer early! Being mindful actually does help, exercise, the whole bit. I allow myself to worry. Having cancer is no holiday. I have to feel everything to go from one stage of having cancer to another and then start all over again when I get another cancerous lung nodule. I've been doing this for over 22 years and for me it doesn't get easier. I have multifocal adenocarcinoma of the lungs. I'm carrying around maybe 4 cancerous lesions but won't know if any of them will be treated until early December, 6 months after my last CT scan. Writing about it here and in my blog https://my20yearscancer.com/, certainly helps.
I wish doctors would keep all of their opinions to them self. All doctors worry about metastasis. So do patients. We can manage our cancer reactions by tending to what is the most important for us to tend to to help ourselves on an even keel. Early AM waking hours are the hardest to handle. Everything is quiet and there is a sense of isolation. Can you read or write to feel less isolated> Do you have family at home?
Has you doctor given you reading materials about your cancer, or has your team of doctors?

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When I first got the news about my cancer I was shocked! I had always been so healthy. I was depressed and anxious for weeks. I have only recently gotten over the diagnosis. I am in the process of getting a new oncologist. I am private about my cancer even with family. Early morning hours are indeed the hardest because you are alone with your thoughts. I spent many sleepless nights wondering why the hell I got cancer! But I am learning to cope. Mostly I am learning to keep busy. I have a full time job so that helps. I am not the same person anymore. I have changed. I find I have much less tolerance for some people. I don’t like to be around lots of people they annoy me. My god is a great comfort. I have a few good friends I rely on. I try not to let worry dictate my life. But at times I do think about the cancer coming back and I have scans in October. I just have to deal with it. I am looking into a cancer group to join where I can be around other people who shar similar experiences. I am sleeping better nowadays and that helps. I want to get my life back on track because I feel derailed! This group helps because I read how others cope. Cancer sucks but we must lose hope!

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@gingerw

@merpreb By golly, if you can hold your breath that long, I certainly bow to you LOL. I will be journaling my thoughts, and doing some sewing to create lap robes for the infusion center there at the cancer institute. I believe in being of service, and channeling my anxiety and nervousness into creative things fills a need in me. My mind says "it is what it is, let's get the results and diagnosis so we can tackle it." I told my oncologist, "I want to address this, and be as great a patient to you as you are as a doctor to me." I am sad that my husband will not be with me when I get the results, because he is not really understanding everything. He will be 800+ miles away. I know that I have been given this row to hoe as the saying goes, for a reason.
Ginger

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If you need a friend, you know where to find me.

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@azkidney57

When I first got the news about my cancer I was shocked! I had always been so healthy. I was depressed and anxious for weeks. I have only recently gotten over the diagnosis. I am in the process of getting a new oncologist. I am private about my cancer even with family. Early morning hours are indeed the hardest because you are alone with your thoughts. I spent many sleepless nights wondering why the hell I got cancer! But I am learning to cope. Mostly I am learning to keep busy. I have a full time job so that helps. I am not the same person anymore. I have changed. I find I have much less tolerance for some people. I don’t like to be around lots of people they annoy me. My god is a great comfort. I have a few good friends I rely on. I try not to let worry dictate my life. But at times I do think about the cancer coming back and I have scans in October. I just have to deal with it. I am looking into a cancer group to join where I can be around other people who shar similar experiences. I am sleeping better nowadays and that helps. I want to get my life back on track because I feel derailed! This group helps because I read how others cope. Cancer sucks but we must lose hope!

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Not sure if this will help you… I have to read it sometimes to remind myself to stop feeling so angry or sad about things.. because I have a lot of why me moments.. see below: took most of it from a book I read….

If I let cancer make me bitter or angry, then I would of spent the last days of my life in sorrow and isolation; making a living hell for my loved ones, and be remembered if at all, a bitter old woman who let cancer defeat her.

I would receive their temporary show of sympathy, but in the end they would only have contempt for me and how I left them;

On the other hand:

If I were positive and hopeful, it wouldn't change the day of my death a bit, but, it would mean that I would spend the last days of my life breathing deeply, clearly, contented and blissful, and in love with my family and everyone I met…
I would die a happy woman and be remembered as that brave soul who faced a terrible death with courage, fortitude and aplomb.
I would be cherished by those who knew me.

Why waste months of my life wailing about an end that wasn't even near?

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@azkidney57

When I first got the news about my cancer I was shocked! I had always been so healthy. I was depressed and anxious for weeks. I have only recently gotten over the diagnosis. I am in the process of getting a new oncologist. I am private about my cancer even with family. Early morning hours are indeed the hardest because you are alone with your thoughts. I spent many sleepless nights wondering why the hell I got cancer! But I am learning to cope. Mostly I am learning to keep busy. I have a full time job so that helps. I am not the same person anymore. I have changed. I find I have much less tolerance for some people. I don’t like to be around lots of people they annoy me. My god is a great comfort. I have a few good friends I rely on. I try not to let worry dictate my life. But at times I do think about the cancer coming back and I have scans in October. I just have to deal with it. I am looking into a cancer group to join where I can be around other people who shar similar experiences. I am sleeping better nowadays and that helps. I want to get my life back on track because I feel derailed! This group helps because I read how others cope. Cancer sucks but we must lose hope!

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I found I had less tolerance for meaningless small talk. I never did the why me question because I always really expected it, but I did struggle a bit until I was about 8 months in to treatment a doctor gave me some chemical help with that. I firmly believe in Zoloft being better living through chemistry now. I went off for a few years, but when my husbands bone cancer returned right away and had to return to Mayo for his second transplant, I went back on it. I try to be grateful for every day we have together and be mindful of the moment, but truthfully sometimes it is really hard. If antidepressants aren’t appropriate for people like us, I don’t know who they are. Because there is so many feelings and thoughts to process all the time. I find that scan time is the longest weeks of the year.

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@azkidney57

When I first got the news about my cancer I was shocked! I had always been so healthy. I was depressed and anxious for weeks. I have only recently gotten over the diagnosis. I am in the process of getting a new oncologist. I am private about my cancer even with family. Early morning hours are indeed the hardest because you are alone with your thoughts. I spent many sleepless nights wondering why the hell I got cancer! But I am learning to cope. Mostly I am learning to keep busy. I have a full time job so that helps. I am not the same person anymore. I have changed. I find I have much less tolerance for some people. I don’t like to be around lots of people they annoy me. My god is a great comfort. I have a few good friends I rely on. I try not to let worry dictate my life. But at times I do think about the cancer coming back and I have scans in October. I just have to deal with it. I am looking into a cancer group to join where I can be around other people who shar similar experiences. I am sleeping better nowadays and that helps. I want to get my life back on track because I feel derailed! This group helps because I read how others cope. Cancer sucks but we must lose hope!

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We must never lose hope sorry but my dog jumped on me while I was texting. Also, I interchange God and dog a lot. I think about God a lot. I was raised Catholic. My dog is my best friend! He is my constant companion. When I first came back from the hospital after my nephrectomy I sat down in the living room and he didn’t jump on me as usual. He sat next to me and put his chin on my lap and stared at me. Best welcome home ever!

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