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Treatment ended, but I'm scared and really down

StruTanToot
Posts: 108
Joined: Aug 2012

Dear Friends:

You have been here for me from that awful day one of learning I had anal cancer. I needed and felt your support immediately. You prepared me and told me what to expect. You told me the ravages treatment would take on my body, and you offered suggestions of healing remedies to burns, itching, pain...you name it. You have me your love, encouragement, and support.

I will never be able to thank you enough. One day I want to be of some help to others. At times, I don't know what I would have done without this forum. No family member came to see me (they live and hour and a half away). My neighbors helped me tremendously, and I am very grateful to them as well. At times though, I got very lonely, as I have no partner. The folks of this site though became my family by caring what happened to me and what I was going through.

Treatment ended Oct. 8, two weeks ago. As soon as I think I might be on the mend, I seem to have a setback. Also, I worked during the weeks of treatment and continue to work (I work from home; I could never have made it to an office).

I'm having trouble dealing with my emotions right now. I know working has worn me out. It's a long story, but I had a very good reason for continuing to work. My company was bought by another company in the middle of this thing...bad time to be out of work.

So...I know I'm tired. How long will this tiredness last? Is it still from the chemo and radiation and what it did to my body? I'm just now realizing what a toll it has taken.

Also, I'm happy treatment is over, and I don't back until December. I'm scared. I have battled depression most of my life and have a successful career, nice home, ect. Only now have I realized how previous life is. I don't want to be worried, depressed, and scared. It seems though as if there is a fork in the rood ahead of me...one to joy and happiness, the other with depression and fear.

I want to take the "happy" road, but the other one is a "comfort zone" of mine.

I don't know...I'm rambling...I want to get my fighting spirit back. I want to fight this this and not live in fear. I want to reach out to others because so many have reached out to me.

I know it takes time and I'm still healing in my mind, body, and soul. I just want to take that happy road this time. I think too that I'm now very much afraid of being alone. I've never been good at meeting people. Now I have both HIV and anal cancer...I feel like "damaged goods."

Sorry to go about so much for so long.

Gog bless you all.

mxperry220
Posts: 357
Joined: Mar 2011

Regarding tiredness I am 3 years 9 months post treatment and still do not have the stamina I had before treatment. The first 2 1/2 years were the worst. I would tire out easily. If I did anything physical for over 30 minutes I would be out of breath and have to sit down and rest. I now walk for 30 minutes 4-5 times weekly. This is what I was doing prior to diagnosis.

As far as depression what you are experiencing is normal. I had depression right after treatment as all the daily treatments and seeing doctors subsided. I looked at the daily treatments as my job. I am retired. After treatments ended I had little social interaction due to the fact of frequent BMs-never knowing when the urge might hit.

Try to steer clear of stressful siuations. I know this is easier said than done when a person is working but try to determine what is really important to you and do not sweat the small stuff.

I found going for short walks helped clear my mind. I stressed out every time I had to see doctors every 90 days for the first 2 years. It seemed I was seeing some doctor every monthduring this period. I was either seeing my primary care, radiologist, chemo, or colorectal surgeon. I am now seeing my chemo and coloretal surgeon on an annual basis.

If you live in an area that has an AIDS outreach program this might help you. From what I have heard they are very good at helping folks with HIV/AIDS.

Hope this helps some.
Mike

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I am so glad to see you posting hear again, even though you are struggling with your emotions, which is even more reason to be here. Believe me, most, if not all of us, have been on that ride of ups and downs. After treatment ends, I think it's especially difficult. I felt like I had been abandoned. No more daily appts., just sitting and waiting for the follow-ups to begin, and frightened that they might be painful or I would get bad news. It's all completely normal, but knowing that doesn't really help when you're going through it. You are worn down, both physically and emotionally, so give yourself a break. Recovery, all aspects of it, take time. This is a brutal treatment that very people can understand. If you have a trusted friend you can talk to, perhaps that would help. We are always here for you, but being able to talk to someone in person who will just listen, not judge, and not try to tell you they understand when they can't might be helpful.

I'm sorry you are feeling down, but may the clouds lift for you soon. It is early in the post-treatment phase, so just remember that better days are ahead.

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I am so glad to hear from you. I have wondered how you are doing. I am so glad that you are done! Congratulations, you made it through the worst part! Yay! Of ccourse you are tired! Your body has been through hell and now you are on your way back. It takes time. You really have to baby yourself now. I didn't have a partner either, and yes, it made me accutely aware of how lonely my life had become since my divorce .So, that might be a good outcome of cancer for me. Before cancer, I thought that my work was enough . Once you are healed and feeling better, you might decide to date again. Something to think about. There is plenty of time for that! I hope we are not damaged goods. I think that we have now experienced so much that we have so much more to offer. You are a survivor and you know how precious life is and that means you hqve so much to offer someone in a relationship. I know that since cancer, I am more myself than I have ever been. I am very clear on what and who is important to me. Cancer becomes a sieve and only real people remain. You are real! Ok, so maybe a little worn out right now, but so real!

So, now you need to rebuild your battered body. Time to renourish yourself with good whole foods that you can digest. It took me a long time to keep anything in. Your fatigue will take a long time to get better, but what you are putting into your body is really going to matter now. What have you been able to eat? Soups are really good to eat right now, because uncooked veggies will just be too hard to digest. Also, lots of lean protein for healing. Chicken, wild salmon. I find hummus great because it is a fiber and helps with the diarreah. So have at least 1/4 cup a day . Also, plain yogurt, a little bit at a time ,to introduce some bacteria to help your gastrointestinal tract. A multivitamin and vitamin D supplement are essential. Check labels and do not take supplements with Sugar substitutes. Also, lots of clean water...a little bit at a time. You will get better! It is ok to feel all of the emotions that go along with surviving cancer. I remember feeling completely overwhelmed. When you feel better, you may want to find a cancer surviviors group. I found a good one for women. It has really helped me. It took me a long time to feel well enough to do this.

I am sending you a great big hug. You know, I hug everyone now. I used to be way too uptight to hug anyone.....now, honestly, I hug everyone. Really, everyone. In the grocery store, the hair dresser, the post man, neighbors, friends, clients,even my ex. Husband....lol. Surviving cancer has made me a hugger......and that is such an improvement from what I used to be! Lol

Big Hug!

Mary

StruTanToot
Posts: 108
Joined: Aug 2012

You mention that cancer becomes a "sieve" and only real people remain. This experience has seemed to open my eyes to that. My neighbors have cared more about me than my friends, and I mean supposedly close friends.

For example, I was talking to one friend of the phone. He spent 20-25 minutes telling me about a problem with is HOA. He finally said, "I guess hearing about my problems takes you mind off your problem," and he laughed. It really felt like he was dismissing me my problem, and I felt that he was incredibly inconsiderate.

There are plenty of examples, and I'm sure we all have our stories. I have just been amazed at how inconsiderate people can be. I know they don't mean to be inconsiderate or insensitive, but it is so obvious.

Then I think I'm the one being selfish. Maybe I feel they should "cut me some slack." I don't know. The thing is, people who I thought I could count on have really let me down. These people include the executor of my estate, the trustee for my pet trust,and on and on. When this is over, I'm changing all my legal documents and have these people removed.

So...all this adds to the feeling of isolation and being alone.Still though, I'm going to get better and feel better and get well and LIVE and enjoy life. Your support helps me to know that there are wonderful caring people out there, both friends and partners.

Thank you all again for lifting me up.

Marynb
Posts: 1134
Joined: Aug 2012

Hi again Strut,

Yes, people do let us down and i felt the same way you do. It is hurtful to see people who just cannot give to others when just a little attention whould go so far. I would only say, don't do anything too rash right now. Some people just are not givers. I don't spend much time with those people anymore, but I wouldn't write them off. Life is long, and you never know.

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I have a very close friend who went through a very nasty divorce right after I finished my treatment. I don't know how many times I heard how terrible that was and how I couldn't possibly understand how painful it was for them. All the while, my rear end is burning like a wildfire and I worried about whether or not my treatment worked. I wanted to scream in their ear and tell them that at least people don't die from a divorce! People can be insensitive jerks, plain and simple. I have made it a point since getting through treatment not to hang with anyone who brings me down. Instead, I surround myself with those who lift me up. You will find that there are plenty of people left in this world who will do just that for you. I would rather have 5 really good friends who always have my back than 500 "friends" who don't have time for me.

StruTanToot
Posts: 108
Joined: Aug 2012

You hit the nail on the head...that's exactly how I feel. I just got off the phone with a friend who went on and on about his house closing...over something silly that he could easily avoid, but he loves the drama.

I want to surround myself with people who lift me up and I want to be able to lift up others. I need to get involved and try to meet people. After I discovered I was HIV+, I kind of withdrew. That was a long time ago, but a patten developed. I just quit doing things.

AND NOW...I feel so foolish! If nothing else good comes from my cancer, I have learned how precious life is. I'm ready to do things and make new friends. Just have to figure out how to do that!

Thank you for always understanding and supporting.

mxperry220
Posts: 357
Joined: Mar 2011

I ran into the same situation as you. I think my friends did not know what to say. They knew I had anal cancer. Even my partner was not as understanding as I thought he could have been. I would try to talk to him and he did not seem too concerned. I think this was his defense barrier not knowing what the future held. One thing throughout my whole process I realized that people are uncomfortable talking about the anus. I was also uncomfortable discussing anything dealing with the anus until I had this awful cancer. Try to remember this type of cancer can be uncomfortable for people to discuss. I know I felt for a while my friends could care less about my well being but months later realized they did not know how much I needed them during this time. They did not know whether to call me or leave me alone. Out of consideration for me they knew I would contact them if I needed them.

You might want to rethink changing your legal documents until you are more into your new norm. Hopefully you will see your friends and relatives were there for you even though it seems they were not at this point.

Hope this helps some.
Mike

StruTanToot
Posts: 108
Joined: Aug 2012

Your words do help. I do try to realize that it is hard for some folks to discuss, but not always...so thank you for the reminder.

I'm just looking SO forward to feeling good again, and want to do something fun. I'm not sure though that I care to spend much time with some of these people anymore. I'm actually thinking about going to the beach for a long weekend, just me and my dog, getting an oceanfront room, open the sliding glass doors to hear the ocean, and snuggle under the covers...be a derelict and only go out to eat.

...my new norm...I like that. On the way, and with such encouragement from all these folks, life will be better than ever.

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I so support your idea of going to the beach for a few days and being away from all the people in your life. Sometimes we just need to be alone with our thoughts and reflect on where we've been and think about where we're going. Even at my 4+ years as a survivor, I would SO love to do that!

Marynb
Posts: 1134
Joined: Aug 2012

Hi Stru,

I am lucky enough to live on a bay and I so understand your desire to be near the ocean. There is something so healing about the water and at night I sit on my deck and hear the sounds of the buoys clanging and it makes me feel so at peace. I have a dock and I actually sit on a dock on the bay watching the time slip away...lol. You need to take time to heal and nurture yourself and think about the life that you want to live from now on. Visualize it. I did a major rethinking of my life, reevaluated relationships, and am now refocusing my career so that all my days are as happy as I can make them. If not now, when? No more putting things off for me.

People have disappointed you and just could not give you what you needed and deserved as a fellow human being. You see their shortcomings. You will forgive them, understand that they just don't get it, and find new relationships with people who do. I really think that once you are healed, you will attract other people who have the same appreciation for life and love. Like attracts like. Don't worry, you will have new and deeper relationships because you will have grown so much from surviving this nightmare. There is a country song.....can't remember who sings it or all the words but something about getting the chance to live like you are dying and loving deeper. So true, for me. I have not taken the leap into dating but I am more appreciative of the people who remain in my life.

I hope you find a nice peaceful spot to heal and breathe in the salt air! You deserve it! All will be well! It really will!

Hugs,

Mary

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

He sang the song Mary mentioned--"Live Like You Were Dying." It's a great song and a tribute to his dad. You can find the video on You Tube.

Marynb
Posts: 1134
Joined: Aug 2012

You know, sin e my treatment I cannot remember names at all. I wonder if that will ever come back? Anyways, I cried when I heard that song and I love it.

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I haven't had as much trouble recalling names, but instead cannot spell anymore worth a darn! I used to work as a medical transcriptionist, which required me to have very good spelling. Now, I must keep the dictionary on my desk and look up even the most simple words.

StruTanToot
Posts: 108
Joined: Aug 2012

I heard him sing that song a few weeks ago on TV...a lot of celebrities were helping to raise money to fight cancer. The words are so true and I'm going to try to keep those words in my mind everyday.

StruTanToot
Posts: 108
Joined: Aug 2012

You description of the ocean and its seemingly healing properties have convinced me that I need to make arrangements to go for a few days.

Thank you too for the encouragement in finding new relationships...I really want and need to do that.

And hugs to you too!

Marynb
Posts: 1134
Joined: Aug 2012

Hi. I think you better put of your healing stay at the ocean.....sounds like hurricane Sandy is headed up the east coast! You sure don't need that.

Re. Songs. I may have gotten corny since I have had cancer, but I try to find a song a day to motivate me. Today's song is by Bruno Mars, "Today my Life Begins". Check it out on youtube. I know I sound like a teeny bopper and I have no idea why a woman my age resorted to music to get me through this...but i have had a song of the day since my diagnosis! Lol. Check out that song! Catchy little tune I have been humming all day.

Hang in there, and batten down the hatches!

Mary

7243
Posts: 211
Joined: Feb 2011

Dear Strut ... I agree with all other friends here and particulary relate to you and MXperry. It is early, but this is the time to get on the path to health and fitness.

Here are some ideas; establish a routine of healthy foods, exercise (like walking in the lovely outdoors), but be flexible that if you're tired, you cut yourself a break and listen to your body. Eat a balanced diet and get daily exercise like a short walk or just stretching. Yoga?? Can you take advantage of the Duke Center for Living? Here is the link .... www.dukeintegrativemedicine.org/ Perhaps that 8 week mindfulness based meditation class ... it would give you 8 weeks of structure and help you settle your mind? Just an idea.

Depression is normal after cancer treatment and to be honest I'm struggling with it and I'm two years post diagnosis this very week. I also have had depression throughout my life ... this makes it only a bit more difficult. It is easy to find myself (perhaps you too) feeling like I should have a handle on this emotionally, however each of us ... you and me and all on this site, progress at our own pace. It is hard and some days are better than others. I relate to mxPerry in that I get stressed and worried and emotional around every check up (every 3 months), but it is getting better. Hang in there and be nice to yourself ... I also related to mxPerry in that I'm 20 months post treatment and I don't have the physical energy or muscle strength I once had. It takes time ...

As for the fatigue after treatement ... I was exhausted at the end and for weeks after. Physically and emotionally. I had to be careful of emotional and stressful situations for months to the first year after treatment. It took time to regain my confidence again ... I was a strong professional woman and I folded like a lawn chair for almost a year. I didn't go back to work until 10 months after treatment given travel requirements and such. So go easy at first.

Pray, meditate, rest, and listen to calm music ... if these things help. It helped me. I also listened to books on my I-touch ; I phone. Guided Imagery is nice too ... Here is a site: http://www.healthjourneys.com/

Okay ... this was long. Hang in there ... sending you strength and Peace as you navigate this new path of yours (ours)! My last message ... YOU ARE NEVER ALONE ... WE are here for you. xo

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you for the encouragement and suggestions. I will check out the Duke Center for Living. I'm a member of a gym, but it only has exercise equipment. I think I want to join the YMCA in order to have access to all kinds of exercise classes, including yoga. I think I'll feel better once I can get back to the gym.

Thank you too for reminding me about a good diet. I want to start incorporating some super foods into my diet. It looks like I'm finally going to have to start cooking. I really don't cook, so it will be something new for me.

Thank you again...your words and support have given me a good boost and have made me feel really good.

Marynb
Posts: 1134
Joined: Aug 2012

Strut, the LiveStrong foundation runs a 12 week program at the YMCAs around here. They are free of charge, meet twice a week, have yoga, endurance and strength training.mall are cancer survivors and you will meet people very kind people there. You may not be ready to try it yet. Just thought I would mention it as a possibility. It gives you a full 12 week Y membership free of charge.

StruTanToot
Posts: 108
Joined: Aug 2012

This is great info...thanks so much for telling me about it. I'm going to check it our right away!

7243
Posts: 211
Joined: Feb 2011

Hang in there Stru ... you're really going "through" the process as there is no way "around" it. Keep going strong and weak as you need to be ... if we avoid the difficulty ... we only have to go back and do it again in some way.

The beach is wonderful ... especially the somewhat quiet ones like Topsail way on the end ... there is a place called Serenity Point (now isn't that just what you need??)... lovely townhomes right on the point; private and secluded. See if you can get one of those on the cheap at the last minute??

You are not alone ... the center for living at Duke is a terrific resource and if you haven't met a gal by the name of Tracy Berger ... seek her out for some "free" counseling. There is a program at Duke supported by a family who lost their daughter to cancer ... they gave a huge donation so cancer patients and survivors don't have to pay for counseling. Call the cancer center and ask for her .... just a thought!

Many positive thoughts your way right this moment. xoxoxo

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you for the encouragement and suggestions. I will check out the Duke Center for Living. I'm a member of a gym, but it only has exercise equipment. I think I want to join the YMCA in order to have access to all kinds of exercise classes, including yoga. I think I'll feel better once I can get back to the gym.

Thank you too for reminding me about a good diet. I want to start incorporating some super foods into my diet. It looks like I'm finally going to have to start cooking. I really don't cook, so it will be something new for me.

Thank you again...your words and support have given me a good boost and have made me feel really good.

rds711
Posts: 113
Joined: Dec 2011

Stru,

I am so very sorry that you're having such a rough time right now. Please know you have a right to what you're feeling and that many of us went through at least some of what you're describing and we do understand.

I know I was so scared, confused and overwhelmed when I heard the diagnosis of anal cancer. Many people were very supportive, especially at first. But then some seemed to fade away into the background. I am sure they felt like they didnt know what to say or do so they just pulled away. My partner however was my rock, no matter what I faced or how moody I was he stood beside me. I was lucky. I also prayed alot and let God carry what I could not.

I know your situation required that you continue working and I am glad your employer allowed you to do so from home but even still, I am in awe of you. I worked the first 3 weeks of treatment but then it hit me like a ton of bricks and all I could do was go from bed to chair and back.

I seemed to be strongest emotionally during the treatment, I was fighting, doing something! Afterwards it all came back, the worry, the waiting, the wondering.

You have literally been going through a major physical and emotional battle Stru. I am sorry that those closest to you do not see how much you need them right now. It does not feel great when we feel let down by others we care about. The ones closest to you should be able to read that you're struggling but sometimes we have to ask for what we need and help them understand what we're feeling. This may cause some to pull away further, (bless them and let them fade away), but maybe there will be a few who wake up and try to support you, I sure hope so.

I understand you feel like there is a fork in the road in front of you. Please know that no matter which path you take you will have wonderful days and there will be not so great days. I believe the key is to be cognizant of and live those wonderful days to the fullest and when the not so great days come along know they wont be there forever. You sound like such a sensitive caring person and I wish for you many happy days ahead.

I can tell you for me it did get better. I have not so great days that it all comes back but I believe that likely will always be the case, BUT I have more and more days where I laugh and just continue to enjoy life.

This may sound Pollyanna-ish but it works for me so I am hanging on to it :)

Stru, I do not see you as "damaged goods". I see you as someone who has had to face some major challenges and so far has showed inner strength and fight and is still going forward!

I care!!

I will pray it gets better for you soon, and I know it will. In the mean time you take care
of YOU!

Randy

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you for your wonderfully kind words and suggestions. Most of all, I want to thank you and everyone else for understanding. I guess one has to go through it in order to be able to understand it.

I have felt better today, and I know it's kind of a roller coaster as far as emotions go right now. I don't know why, but there have been times when I wake up in the middle of the night and just totally lose it and cry like a baby. I wake up my little dog and hold her in my arms, and she tries to lick the sorrow away. That happened last night.

Things are getting better though. Physically, I feel the best today since treatment ended. I have very little discomfort and don't seem quite as tired. So...as much as I complain, I am grateful that things appear to be on the upswing. I guess it's the emotional part I have to face now.

I face it with wonderful people from this site who understand. I really mean it when I say you mean the world to me.

Porter
Posts: 5
Joined: Oct 2012

Hi Stru
Like you I'm post treatment too. (7 mos now) A couple weeks ago I was really fighting my emotions. I wondered how can I be feeling like this? I should be happy, physically I feel great. I'm normally not an emotional person so it was unusual. I think this is a very common thing for us. I've been able to work out of it with exercise, yoga, meditation. Just yesterday I had a friend of mine, a fellow Reiki master, take me through a guided healing meditation. Processing the traumatic treatment we've been through takes time. We have to be patient with ourselves. Right after treatment ended I felt I had PTSD. I couldn't think about going back to my doctors for3- 4 months. It really helped when i could share my experience and support to someone in the middle of treatment and having a terrible time. I've been able to work through the most of this through vacation via journaling, writing, talking with good friends and painting.

A couple of months ago I found this great quote that I want to share with you.

"Surround yourself with people that are outrageously optimistic. Flock with others who are truly, madly and deeply in love with life. Move in the company of kindred spirits who build you up and give you wings to fly." By soul seeds

It gets better and through this process we find our friends that matter the most. Hugs to you and your little dog.
Porter

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

Thank you for sharing this wonderful quote. It is so true, this is what we all need to do.

I hope you are doing well.

kirby77
Posts: 48
Joined: Jul 2012

smile and go thru the motions. It hurts, it's not authentic. But the response you will get may be just the right word, that can pull you back.

I am swamped right now, and don't know how I can get to the end since returning to work. I just have to put one foot in front of the other and hope I dont' **** my pants.

If I do, then, I'll clean it up.

Personal life, my ******* feels like it will never feel the same, I am sexless eunuch. The most I've done is give a little snuggle to my honey. and he moaned in appreciation.

Keep moving, don't give up. If you do, start again the next day.

Kirby

StruTanToot
Posts: 108
Joined: Aug 2012

Thank you so much for the words of encouragement, and I love the quotation.

I just don't understand why I feel do down...I thought I was doing better, but the last couple of days have been kind of bad. Even the smallest thing seems to overwhelm me.

I KNOW I need to count my blessings and have a positive outlook. Seems that is easier said than done though. I realized today that I have felt worse (emotionally) after treatment than I did before or during treatment.

Anyway...my thanks to all of you for your support and understanding. Thank you too for sharing your experiences with me. It is nice to know that what I'm going through is not abnormal or "crazy."

It's just one of the battles in this war, and I intend to win both.

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

hey, i get down a lot and i am over 3 years post tx. but still deal with side effects. i went on a lovely vacation but could not get moving as fast as everyone else and felt like a burden... i just do the best i can. your feelings are normal. sephie

Marynb
Posts: 1134
Joined: Aug 2012

Just know that you will surely have ups and downs for awhile and that is ok. It will get better. You have been through so much and there are much better days ahead! When the bad days come, don't be surprised. I hope you are eating well and getting your nourishment. As your eating gets bak to normal, your body will rebuild and help you feel better overall. Now is the time to really baby yourself with good meals that you can digest. Also, a multivitamin. You got through it and one step at a tiime, you will get through the aftemath!

Hugs. Mary

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