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?

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June….11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry….when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

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@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June….11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry….when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

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Oh dear. You have your hands full. But your health is most important. These small lesions should come out whether they are bio-siblie or not. Do you have a sympathetic doctor? You need someone to hold you together! Thisistoo much worry. See if there is a social worker who can help.Good luck….

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@susu2

Oh dear. You have your hands full. But your health is most important. These small lesions should come out whether they are bio-siblie or not. Do you have a sympathetic doctor? You need someone to hold you together! Thisistoo much worry. See if there is a social worker who can help.Good luck….

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Thanks. The reason that they aren’t removing them without a biopsy is that if they are metastatic triple negative breast cancer, removing them isn’t the proper treatment. So they would be removing a portion of my lung for no good reason. If it turns out to be the TNBC, the oncologist and physicians asst. are wonderful and sympathetic. If it turns out to be lung cancer, that's a different story. While I think the oncologist and surgeon are excellent in most ways, I just don’t think the mental aspects of this are their strong suit. But I am going to Mayo Jax and I know the drs there are so far superior to anyone local that there is no question I want to continue with them. I initially started out locally with the breast cancer. They totally missed the lump when they tried to biopsy, did not call with results, and it was a comedy of errors from the getgo. I was so furious and disgruntled that I called Mayo the second I walked in the door after the surgeon appt and never looked back. I did go and see a local psychologist one time. Frankly, I thought he was an idiot. When I thought about it, I should have expected that considering who recommended him.

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@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June….11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry….when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

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@cwm1– Good morning. I hope that this finds you on a sunny beach. You are a super woman and in need of putting your foot down to some of your demands. I can't imagine how you are handling all of this.
First to your cancer- It sounds as if you might have Multifocal Adenocarcinoma of the lung. I have this and have survived 22 years after having many nodules that have come and gone and 4 that needed removal. Hopefully your type of cancer will be large enough to biopsy or the radiologist can tell if it is MAC (Multifocal Adenocarcinoma of the lung).
Your own health should come first but I think that under the present circumstances you need to think this too. If there is no way that you can turn your son out than he should be asked to take up slack by helping care for his grandparents. Your other siblings should also take part in this care. There are planes. It's a tough situation, I know. But you can't do everything and take care of yourself.
How about this, make two lists. One should be your top priorities and ones that you have control over.
Is it possible, that if your son isn't capable of caring for his grandparents, that they or you hire help to lessen your burden? Can you have food delivered for example, house keeping help, anything? The American Cancer Society can help with this, maybe your house of worship?
Then make a list with things that you have no control over- and put them in a drawer and forget about them until things change. I know that it won't stop your worrying about your son, but you have housed and fed him. He's warm and loved. The rest should be up to
Please, please don't assume so many duties-now it's your time to take care of yourself. This is a very difficult time for you and if you haven't asked the rest of your family to help, this is the right time and will help reduce your stress level., don't you think?

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@alamogal635

Am such a newbie at all this I am not sure this si where my post should be. In march of 2019 had a VATS–right lobe removal– for a stage 1 lung cancer spot. Am doing well and since it was so small and caught early with no spread, my oncologist said we will wait until September for a CT. scan. That sounded great. I'm now thinking truly how soon really the CT scan will come in September and if I let myself, I start worrying about the "what ifs." Truth be told, I worry about recurrence, but often times try and NOT think about it. However, it looms in the back of my mind. I know that should cancer be found again, Iw ill deal with it, but the fear of it does NOT go away. Just wondering how others handle this sort of thing. Thank you all for your help.

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You are beautiful. I guess in answer to your question, I live with my “new normal”. Every six months a glimpse into a mystery, hoping there’s no new sign of things developing, being ready to deal with whatever the outcome. But thankful there are oncologists and learning/teaching/research facilities ready to catch “it” before it goes too far. And thankful for blogs such as this which actually was, for me, the first step to a life-saving journey. This is where I first learned of the doctors at Mayo Clinic that diagnosed and surgically removed my Carcinoid Cancer. So, thank you to the brave survivors who share their stories in this way.

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@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June….11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry….when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

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I too “had” elderly parents to attend to and it seemed I was alone in that until I finally reached out to my step-siblings to re-enter their dad’s life. Then there was just mom who was 90 when I was my sickest. My siblings all lived either on the west coast or in the mid-west and one lived in Asia. When asked to help they all were not able. One had passed the previous year with multiple metastatic cancers, another just diagnosed with bladder cancer (which is now metastatic), my significant other had just gone through colon surgery, and then I was diagnosed with Carcinoid Cancer and went through surgery. Luckily one son stepped-up to the plate to help with mom. Less than four months post-surgery, while still trying to arrange meetings with Alzheimer’s agency reps for her future institutional care, mom passed away. I, as her executrix, was the one to settle her estate which included out-of-State property. We get through “the stuff” in life even at the worst times. For me, my reliance was on my God and his son Jesus to guide me. Though others I thought could help but failed to do so, my help came from unexpected sources when I sought that power higher than myself.

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@cwm1

Thanks. The reason that they aren’t removing them without a biopsy is that if they are metastatic triple negative breast cancer, removing them isn’t the proper treatment. So they would be removing a portion of my lung for no good reason. If it turns out to be the TNBC, the oncologist and physicians asst. are wonderful and sympathetic. If it turns out to be lung cancer, that's a different story. While I think the oncologist and surgeon are excellent in most ways, I just don’t think the mental aspects of this are their strong suit. But I am going to Mayo Jax and I know the drs there are so far superior to anyone local that there is no question I want to continue with them. I initially started out locally with the breast cancer. They totally missed the lump when they tried to biopsy, did not call with results, and it was a comedy of errors from the getgo. I was so furious and disgruntled that I called Mayo the second I walked in the door after the surgeon appt and never looked back. I did go and see a local psychologist one time. Frankly, I thought he was an idiot. When I thought about it, I should have expected that considering who recommended him.

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It sounds like you have very competent doctors advising you. I have a friend facing the same situation and her doctors are proceeding carefully for similar reasons. I, too, have small lung nodules bring “watched”. After having one type of cancer, doctors, oncologists, radiologists, are very diligent in analyzing new or existing nodules. They are trained to be suspicious of any changes and nuances that they suspect need a biopsy and leave the benign to diligent watching.

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@cwm1

Thanks. The reason that they aren’t removing them without a biopsy is that if they are metastatic triple negative breast cancer, removing them isn’t the proper treatment. So they would be removing a portion of my lung for no good reason. If it turns out to be the TNBC, the oncologist and physicians asst. are wonderful and sympathetic. If it turns out to be lung cancer, that's a different story. While I think the oncologist and surgeon are excellent in most ways, I just don’t think the mental aspects of this are their strong suit. But I am going to Mayo Jax and I know the drs there are so far superior to anyone local that there is no question I want to continue with them. I initially started out locally with the breast cancer. They totally missed the lump when they tried to biopsy, did not call with results, and it was a comedy of errors from the getgo. I was so furious and disgruntled that I called Mayo the second I walked in the door after the surgeon appt and never looked back. I did go and see a local psychologist one time. Frankly, I thought he was an idiot. When I thought about it, I should have expected that considering who recommended him.

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@cwm1– Certainly I've seen my share of idiots too! After my first appointment with my first and present surgeon I walked out telling my husband that I didn't like him. My husband said that that wasn't important, just his skills. I've now known him for close to 22 years and love him. He was never and idiot though, just standoffish.
I'm so glad that you found your "medical home." Mine is at MGH as we do not have a Mayo Clinic near us.
We're lucky to have found these excellent doctors. To keep searching for the right ones is certainly worth the search. Don't you agree?

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@musicflowers4u

I too “had” elderly parents to attend to and it seemed I was alone in that until I finally reached out to my step-siblings to re-enter their dad’s life. Then there was just mom who was 90 when I was my sickest. My siblings all lived either on the west coast or in the mid-west and one lived in Asia. When asked to help they all were not able. One had passed the previous year with multiple metastatic cancers, another just diagnosed with bladder cancer (which is now metastatic), my significant other had just gone through colon surgery, and then I was diagnosed with Carcinoid Cancer and went through surgery. Luckily one son stepped-up to the plate to help with mom. Less than four months post-surgery, while still trying to arrange meetings with Alzheimer’s agency reps for her future institutional care, mom passed away. I, as her executrix, was the one to settle her estate which included out-of-State property. We get through “the stuff” in life even at the worst times. For me, my reliance was on my God and his son Jesus to guide me. Though others I thought could help but failed to do so, my help came from unexpected sources when I sought that power higher than myself.

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@musicflowers4u– I'm very glad that you found strength through a personal experience with a higher power, and your son. There are several ways to learn to cope, if it comes down to that. However, like you, it's always good to have or ask for help if it's available first.
Having to cope with things other than us when we are ill is added stress that many people need to cope with. And we are stronger than we think that we are. But sometimes we do have to start with a hard line and go from there, setting limits, etc. I had to do that. Don't you think that's where we have to start?

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@merpreb

@alamogal635– Good morning. Oh boy do I know what you mean! lol. Although I feel great I'm still dreading my CT scan this Tuesday. After hearing that I have cancer 4 times I'm still never ready to hear it again. All I can say is that you get use to it- the dread, the heart palpitations, the night mares, the cold sweats…And you have to accept that it might come back and that you might have to go "through it all again". That doesn't make it easier, just more familiar. I think that I finally accepted it with my last one, almost 2 years ago. I also know that there are options and always new treatments.
The cancer world isn't any easy one. It's riddled with uncertainty, fear and looking over your shoulder. It's like having a bad dream follow you around, but with a truth attached to it. You can either chose to give yourself options in dealing with it, like you have, or deny it, like I did for quite a while. Does this make sense?.

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@merpreb Am wishing you the best tomorrow. I will be thinking of you. Thank you for the above words of encouragement. They help. Yes, you make complete and great sense.

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@merpreb

@musicflowers4u– I'm very glad that you found strength through a personal experience with a higher power, and your son. There are several ways to learn to cope, if it comes down to that. However, like you, it's always good to have or ask for help if it's available first.
Having to cope with things other than us when we are ill is added stress that many people need to cope with. And we are stronger than we think that we are. But sometimes we do have to start with a hard line and go from there, setting limits, etc. I had to do that. Don't you think that's where we have to start?

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Yes, you are right.

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@cwm1

I had somehow never seen this post until yesterday. I was diagnosed with stage 2A triple negative breast cancer (the most aggressive kind) almost exactly 3 years ago. After a lumpectomy, chemo and radiation, I finally finished treatment in June….11 months later. I had several chemos postponed to to blood counts. In March 2018, they found a malignant nodule in my lung. Initially it was assumed to be metastatic breast cancer but, lucky me, it was lung cancer. I had a wedge resection and went on my merry way with no chemo or radiation. It was stage 1A. In Nov. 2018, they found another nodule. It was too small to biopsy. We waited 3 mos., had another scan and now there were 2, possibly 3 nodules, which were all too small to biopsy. That 3rd possible nodule, radiology didn’t see but the surgeon thought he did. That one was in the same lung. Tho other two are in the opposite lung. I’ll be rescanned July 25. They need to know if this is lung cancer or breast cancer before proceeding. I'm hoping they’re large enough to biopsy now.

When I say I’m hoping they’re large enough to biopsy, that's only half true. A part of me hopes they’re still too small but mentally, I’m not sure how I’ll make it another few months without totally flipping out. There are some other family issues that are stressing me out and the combination of all of them sometimes seems just too much to handle. My parents are thankfully still living and in reasonably good health considering they are 88 and 89 years young. They live 3 blocks from me but my nearest sibling is over 1100 miles away so my husband and I are the ones who do whatever they need doing. We have a 49 yr old son with some disabilities and marital issues who recently moved in with us and after 25 years of not having anyone living with us full time, this has been stressful. Our other 2 sons both live over 1000 miles away and the one who moved in lived 800 miles away until he moved in with us.

My salvation is that we live near a beach and I go almost every day and walk and sit. I try to walk at least 3 miles a day and frequently walk around 6. I think it helps me keep my sanity. I tend to cry….when I’m happy, when I’m sad, and frankly for no discernible reason at all. My husband has been a rock throughout all of this. The fact that we drive 1 1/2 hrs each way to see drs. at Mayo Jax makes things a bit more difficult too. I am 69 yrs old.

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@cwm1 I hope you been walking nonstop? I sure was wandering like a lost soul after my double trouble cancer diagnosis. I can relate to the crying, plus I was hyperventilating with the crying. Which I had never hyperventilated before in my life.

I have no siblings or parents left. Just a husband and 2 sons. My sons do not live near me at all..

Have you looked into the Livestrong program at all? They have people that help guide you through the double trouble nightmare maze you are dealing with. They also have a free 12 week YMCA workout program to help you keep your mind distracted with fitness trainers.
They helped me a lot when i could barely get out of bed. I used to think what for? The exercise program was a nice healthy distraction. Another thing I did was meet with a dietitian to help work out a nutritional plan to help focus on. Foods that help starve off Cecum cancer and Follicular Lymphoma.

You need to Focus on you right now. Your body needs you strong and focused to heal yourself.
Take the time to block out your stresses and regroup your strengths to heal.
Can you please let us know how your Dr visit goes on 7/25?

I been bouncing on, and off so I will watch for your post.
Praying for the best for you..
Jackie
.

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@merpreb and to all of you beautiful women…I am going through my own medical issues and the possibility of Lupus, Thyroid Cancer and/or mouth cancer. My my doctor has gone away on vacation again like she normally does just about every other week and leaves for three weeks. In the meantime, I am sitting here going crazy just waiting to find out what else I have. I also live with a rare disease called stiff person syndrome that has many variants. I must be emotional because I am in tears, because no matter what – you all are very strong women and clearly are the definition of WARRIORS! You are all an inspiration to me. I lead a support group for those of us living with Stiff Person Syndrome, on Facebook since 2012. I had to stop working and retire in November 2011. When I found out that I had Stiff Person Syndrome, I just was in denial. It affected my job, I was told that my position from Court Operations Supervisor and Courtroom Deputy to our Magistrate Judge would need to go on to someone else who could be at work every day. I was not GIVING UP! I made a terrible choice and stopped taking all of my necessary medication and just needed one last good year. I only made it through six months. Our lives completely change. When I researched my illness….I could barely find anything on the web. which not many specialists are very familiar with this rare disabling condition. Shortly after I joined this support group I was asked to be a part of the Admin Team. I have only let my feelings out to the public just a few times. Other than that I am doing everything to the best of my ability to help all of our SPS patients and families. I am very close to my mother-in-law and my husband's family. My mother-in-law gives takes very good care of me. My Daddy passed last year due to Cancer. My mother-in-law also had cancer, My Grandpa and Grandma passed away from Cancer, along with one of my Aunties and an Uncle. I have another uncle who just found out he has stage 4 thyroid cancer. He is not well at al. It has been pretty rough seeing one member of our family after another pass due to this ugly disease. Yet, I stay strong and support, educate and Advocate for our group members. We have almost 2200 members; some are family and friends.

I apologize for going in circles, but I have been very sick and bedridden since the second week of this year. I tend to have bad nights like that. Today is one of them. Please pardon me for writing about one thing; then the other.

I wanted to be sure to tell you all that each of you are such an inspiration to me. I am so happy to have this opportunity to be a part of this social connect group. I love and appreciate how positive, caring and empathetic everyone is to one another. I am very fortunate to be surrounded by such a caring and compassionate group. My heart and prayers go out to all of you. I am honored to be in this group. I need to get healthier, so I can spend more time on the group. I shall definitely need to set up a deadline for each challenge I have on my list.

Please know that although I have not ever spoke with any of you, I am very happy I logged on, read your "true stories", and love to see the determination and fight and compassion you have for each other. May our Heavenly Father bless you and your families.

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@mrsbv

@merpreb and to all of you beautiful women…I am going through my own medical issues and the possibility of Lupus, Thyroid Cancer and/or mouth cancer. My my doctor has gone away on vacation again like she normally does just about every other week and leaves for three weeks. In the meantime, I am sitting here going crazy just waiting to find out what else I have. I also live with a rare disease called stiff person syndrome that has many variants. I must be emotional because I am in tears, because no matter what – you all are very strong women and clearly are the definition of WARRIORS! You are all an inspiration to me. I lead a support group for those of us living with Stiff Person Syndrome, on Facebook since 2012. I had to stop working and retire in November 2011. When I found out that I had Stiff Person Syndrome, I just was in denial. It affected my job, I was told that my position from Court Operations Supervisor and Courtroom Deputy to our Magistrate Judge would need to go on to someone else who could be at work every day. I was not GIVING UP! I made a terrible choice and stopped taking all of my necessary medication and just needed one last good year. I only made it through six months. Our lives completely change. When I researched my illness….I could barely find anything on the web. which not many specialists are very familiar with this rare disabling condition. Shortly after I joined this support group I was asked to be a part of the Admin Team. I have only let my feelings out to the public just a few times. Other than that I am doing everything to the best of my ability to help all of our SPS patients and families. I am very close to my mother-in-law and my husband's family. My mother-in-law gives takes very good care of me. My Daddy passed last year due to Cancer. My mother-in-law also had cancer, My Grandpa and Grandma passed away from Cancer, along with one of my Aunties and an Uncle. I have another uncle who just found out he has stage 4 thyroid cancer. He is not well at al. It has been pretty rough seeing one member of our family after another pass due to this ugly disease. Yet, I stay strong and support, educate and Advocate for our group members. We have almost 2200 members; some are family and friends.

I apologize for going in circles, but I have been very sick and bedridden since the second week of this year. I tend to have bad nights like that. Today is one of them. Please pardon me for writing about one thing; then the other.

I wanted to be sure to tell you all that each of you are such an inspiration to me. I am so happy to have this opportunity to be a part of this social connect group. I love and appreciate how positive, caring and empathetic everyone is to one another. I am very fortunate to be surrounded by such a caring and compassionate group. My heart and prayers go out to all of you. I am honored to be in this group. I need to get healthier, so I can spend more time on the group. I shall definitely need to set up a deadline for each challenge I have on my list.

Please know that although I have not ever spoke with any of you, I am very happy I logged on, read your "true stories", and love to see the determination and fight and compassion you have for each other. May our Heavenly Father bless you and your families.

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Hello @mrsbv,

I am sorry to hear of all of the health issues you are facing right now. I noticed that Connect mentor, @johnbishop previously posted the following websites where you could find others dealing with stiff-person syndrome. Below there is also a website where you can find doctors who specialize in stiff-person syndrome. Will you please open those links and take a look?

I would also encourage you to seek a second opinion if you don't feel your needs are being responded to in a timely way. If you live near a multi-disciplinary health facility (like a university medical school or a Mayo facility) I would encourage you to go to this type of medical institution in order to seek another opinion and treatment.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I'm not sure if you have tried this website but the American Association of Neuromuscular & Electrodiagnostic Medicine website has a link to search for a specialist: https://www.aanem.org/Patients/Find-a-Specialist. Have you been diagnosed with Stiff Person Syndrome?

Will you post again?

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@travelgirl

@cwm1 I hope you been walking nonstop? I sure was wandering like a lost soul after my double trouble cancer diagnosis. I can relate to the crying, plus I was hyperventilating with the crying. Which I had never hyperventilated before in my life.

I have no siblings or parents left. Just a husband and 2 sons. My sons do not live near me at all..

Have you looked into the Livestrong program at all? They have people that help guide you through the double trouble nightmare maze you are dealing with. They also have a free 12 week YMCA workout program to help you keep your mind distracted with fitness trainers.
They helped me a lot when i could barely get out of bed. I used to think what for? The exercise program was a nice healthy distraction. Another thing I did was meet with a dietitian to help work out a nutritional plan to help focus on. Foods that help starve off Cecum cancer and Follicular Lymphoma.

You need to Focus on you right now. Your body needs you strong and focused to heal yourself.
Take the time to block out your stresses and regroup your strengths to heal.
Can you please let us know how your Dr visit goes on 7/25?

I been bouncing on, and off so I will watch for your post.
Praying for the best for you..
Jackie
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@travelgirl Some great words of wisdom and practical experience for @cwm1. Exercise, especially in groups, like at the Y or community centers, are great ways to reduce the stress that comes with a cancer diagnosis. I'm a great believer in exercise as well and practice it regularly.

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