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?

@karendb– Start with the arm exercises, which are a the bottom of this list. Star with no more that 5-8 reps. If you don't understand the positions then google them and watch while someone does it, even if it's with weights. https://www.cancervic.org.au/living-with-cancer/exercise/strength-training-exercises.
I'll also answer any questions that you have about them. Take it slow. Do not get out of breath. Rest in between each exercise or 1/2 minute. Don't strain yourself!

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@karendb

Ok. Thank you very much.

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Karen- I'm here if you need me. I've got your back on this.

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@merpreb

@karendb– Start with the arm exercises, which are a the bottom of this list. Star with no more that 5-8 reps. If you don't understand the positions then google them and watch while someone does it, even if it's with weights. https://www.cancervic.org.au/living-with-cancer/exercise/strength-training-exercises.
I'll also answer any questions that you have about them. Take it slow. Do not get out of breath. Rest in between each exercise or 1/2 minute. Don't strain yourself!

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@karendb– Aren't there special arm exercises to do after breast cancer? Maybe after your first follow-up they will recommend this to you. Please check with your doctor to make sure that this is ok for you to do.

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@merpreb

@karendb– Aren't there special arm exercises to do after breast cancer? Maybe after your first follow-up they will recommend this to you. Please check with your doctor to make sure that this is ok for you to do.

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Thank you. I'll keep you informed as to how it's going. Thank you again.

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@merpreb

@bjh369– This can often happen with certain chemos. You taste will return to normal in the future. Chemos can also make you feel very tired. Here is my blog post about that
https://my20yearscancer.com/chemotherapy-cocktail/

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I will be on temozolomide for the rest of my time here on earth because glioblastoma is like a weed; you can cut it out, spray it and it will come back even stronger:(

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@bjh369– I hear you. How did your CT scan of January 17th go? Have you found any foods that taste better than others? When I was on Cisplatin, which gives off a very very strong chemical taste, strong tasting foods helped me. Has the taste of this chemical reduced at all as your body acclimates to it?

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They changed my MRI date…still waiting to hear…should be this week or 1st part of the next week…then we shall see if the radiation & 1st round of temozolomide worked. I've been off temozolomide for almost a month and things still don't taste good. Some smells…because of radiation..will really both me so I've noticed ham or beef cooking with really turn me off:( I have always liked my meat but now I almost have to force myself to eat it.
At the end of each radiation treatment I would smell what smelled like burning flesh to me. That smell just haunts me:( Nasty.

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@bjh369– Do you stop the temozolomide in between sessions of treatments? Am I mistaken that you said that you would have to take it for life?

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I will be starting radiation treatments in one week. I wonder if that's a common occurrence to smell burning flesh? I've not heard that before and wonder if I should prepare myself.

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@karendb

I will be starting radiation treatments in one week. I wonder if that's a common occurrence to smell burning flesh? I've not heard that before and wonder if I should prepare myself.

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I just noticed towards the last couple of weeks of radiation my sense of small was like….I could smell everything really well. You have to remember my head from my right eye to past my right ear was in the radiation path. So like I'd said…toward the end of each radiation treatment during the last two weeks of it at least I would think I smelled something burning and my mind told me it was flesh. I've never smelt flesh burn so I imagine it was my mind working on me…..

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@merpreb

@bjh369– Do you stop the temozolomide in between sessions of treatments? Am I mistaken that you said that you would have to take it for life?

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Well right now I'm waiting on appointments with Mayo Clinic to get started with double temozolomide for 5 days then off for 3 weeks and when I start that regimen I understand that if my body can tolerate it I will remain on that regimen. If my body can't tolerate it then I may be gone sooner than I'd like. Doc is also going to have me try the Optune device by the end of February 2019. It may give me a couple more years on planet earth. Hopefully I will know more about all this after my appointment on January 25th.

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@bjh. I'll be curious to see how you are doing.

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@karen– your radiation will be in a different place on your body. Don't forget, everyone is different and reacts differently. I hope that your chin is raised a bit more. We're all pulling for you

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Wow. I'm amazed that the very topic of concern for myself is the first one that popped up! I was absolutely certain God had healed me of triple-negative breast cancer of overlapping sites after eight rounds of AC and Toxil followed by a double lumpectomy and removal of seven lymph nodes. At my one year check-up, another lump was found in my breast so I had a mastectomy. Now my Medical Oncologist is suggesting five more rounds of Taxene (almost same as Taxol). Taxol made my lupus and Sjögren's flare severely and caused horrific bone pain. I'm so depressed I can barely get out of bed. I postponed my port surgery and am having a horrible time agreeing to this horrid chemo. Second opinions suggested a different chemo agent but my Oncologist refuses anything but CT. Can anyone relate or have any suggestions? I hate, hate. Hate having more of this chemo! I went to a Psychiatric Hospital but they wouldn't admit me because I wasn't Suicidal (yet).

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@djanthony

Wow. I'm amazed that the very topic of concern for myself is the first one that popped up! I was absolutely certain God had healed me of triple-negative breast cancer of overlapping sites after eight rounds of AC and Toxil followed by a double lumpectomy and removal of seven lymph nodes. At my one year check-up, another lump was found in my breast so I had a mastectomy. Now my Medical Oncologist is suggesting five more rounds of Taxene (almost same as Taxol). Taxol made my lupus and Sjögren's flare severely and caused horrific bone pain. I'm so depressed I can barely get out of bed. I postponed my port surgery and am having a horrible time agreeing to this horrid chemo. Second opinions suggested a different chemo agent but my Oncologist refuses anything but CT. Can anyone relate or have any suggestions? I hate, hate. Hate having more of this chemo! I went to a Psychiatric Hospital but they wouldn't admit me because I wasn't Suicidal (yet).

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I had 4 rounds of AC followed by 16 round of Taxol a year ago. While on Herceptin I had a double mastectomy with immediate reconstruction. I am still on Pertuzumab and Trastuzumab. I found the Taxol and the AC to be the worst chemo to tolerate. I honestly regret having the AC and Taxol and wish I just had the mastectomies and target treatment. Too late now. I had my port inserted 48 hours prior to my first round of chemo. That surgery was more painful than the mastectomies. My intention is not to scare you but rather be up front and honest. I wish knew what I was in for and was in a position to make a better decision. My suggestion is take an extra day or two to think about this. You are right the chemo is horrible.

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