New to forums and in need of support and understanding

Hi Sweatpea.  I'm sorry that you have had to take this journey like the rest of us.  The treatment is rough and sometimes has lasting side effects.  However, I am a 6-year survivor and can say that I am doing quite well and feeling good.  But, it did take me about 2 years before I really felt like I was back to normal.  The first 6 months after treatment were very rough for me, due to continuing diarrhea.  It finally eased up and I began seeing improvement.  My fatigue really didn't last too long.  I am a firm believer in the benefits of exercise, so I resumed an exercise program right away.  I think it gave me energy, believe it or not!  Have you had your blood levels checked recently?  Some people are low in B-vitamins and find that B-12 injections can be helpful in feeling more energetic.  I think diet can have a great effect on energy levels as well.  Getting the right amounts of carbs, fats and proteins is important.  Perhaps a consultation with a nutritionist would help you.  As unfortunate as it is, some people deal with depression after cancer treatment, which can also have this effect.  I hope you are still getting follow-ups with your doctors and that you can talk to them about this.  If you don't have a follow-up appointment coming up, make one with your primary care doctor to discuss this. 

Our bodies go through a lot with this treatment, even though the treatment itself lasts for only a few weeks.  Some people recover better and faster than others.  However, I recommend that you at least talk to your doctors and see if there are any tests that can determine why you are still so fatigued.  Take care and please keep us posted.  I wish you all the best.

As the others have said welcome, I just finished treatment the end of June so I am not a wealth of information like the others but I went back to work last week and couldn't be more fatigued if I was Rip Van Winkle. I also feel beat up physically from head to toe, I will tell you there is something to be said for the B-12, I have not had the shots from the doctors office but a friend bought me a 12 pack of b-12 shots to drink down and on my really bad days it does help increase my energy level. My day is basically work, nap, eat watch tv and back to bed. Not what I was hoping for 3 months after treatment and there are days I am near tears with frustration of my new life. Unfortunately I must work so I have to keep plugging along but you may want to try the drinkable shots from the health food store to start. I have my scans the week after next and hope that some good news will pep me up. I  hope you see some increase in your energy level soon.

sandysp said:

2 years for me was the turning point

I was very impatient with my recovery and still am.

I have not gone back to my main job but keep my part time job which helps me feel like I am in the game a bit. 

Things just weren't the same for me after my diagnosis and treatment. But after three years I really started to feel good again. I am hoping that happens to you too.

Stay close to the board. It helps with the depression which comes somewhat from the isolation and feeling in ill health or poor strength. Martha is right about the exercise but standing for any length of time is hard and you may wind up not wanting to go back to your previous schedule. 

Maybe you can find some other aspect of healing art which would not require being on your feet. 

Martha mentioned exercise. I am a big fan of Tai Chi and Yoga (for the last year Bikram Yoga). Some people really enjoy walking and running but my gait is poor and really rules out the kind of exercise I feel I need using my feet and legs. But I have really learned to balance myself in some interesting poses in a 105 degree room!

Stay close and don't give up on yourself. This disease has benefited me in the sense that I am far more comfortable with being who I am - after being a person with anal cancer, I just had to finally accept myself with all my other flaws too! And love me! If we don't love ourselves who else can we expect to?

We give plenty of love and acceptance to each other on this board, so I am so glad you found us and hope you feel free to share from the heart any time you want. Welcome.

Sincerely,

Sandy

I am 20 months post treatment,  & I don't have the stamina I had before cancer. Massage I suspect, would take a lot of stamina......even the thought makes me weary. if you need to continue, you need to pace yourself so that you don't overdo it. You may not always be like this as I know I am still improving.

Our path through treatment & recovery is going to be different to others, as different parts of our bodies have been affected by radiation. Our pelvis supports our whole body weight, & that has been zapped  to rid us of cancer. In doing that, our musculoskeletal cells may have been compromised in how they are able to renew & function. When you are massaging,  you are involving your pelvis in a workout. No wonder you are feeling it! 

Sandy is right! Stay close to this site. Be kind to yourself & if you can, give your serf time to recover some more.

Liz x

Ouch_Ouch_Ouch said:

Greetings

Hello, Sweatpea (really cute pun you have there!):

At the risk of being redundant (I already posted this info into another thread)...If there are no other problems that need treating (anemia, etc) beyond depletion from the cancer and it's treatment, you should consider this:

If you haven't already looked into it, the STAR Program certifies physical and speech therapists in the United States to rehabilitate cancer patients and survivors. See if there's a program in your area and get your oncologist/radiation oncologist/primary to prescribe it for you. Even if you've already gone through the program, you might benefit from another go-around. Removing/controling pain, restoring function, increasing strength and stamina, treating "chemobrain" are all goals of the program. At the homepage, in the upper right hand corner, you'll find a search function. There are many STAR Programs across the country: http://www.oncrehab.com/

I am getting stronger physically (after 2-1/2 months post treatment), but I still tire very quickly and have to stay aware of the location of the closest bathroom. However, my brain is what concerns me. The therapist says that I have a mild disability accessing my memories following cancer and treatment, but it feels like a BIG disability to me.

I still have pain with bowel movements, but they are more like paper cuts now and not like screaming-out-loud fist-clenching hot razor blades. Unfortunately, as pointed out above, nasty side effects may take longer to leave than you've already waited. Sadly, in some people, they may never leave completely.

(By the way, if you want to look it up on the Internet, the spelling you'll need is "squamous cell carcinoma". I rely on spell-checkers myself, but there isn't one here.) There's a lot of information about anal cancer on the main American Cancer Society site, the HPV & Anal Cancer Foundation, and lots of others.

All my fingers, toes, and eyes are crossed for you!

Also, the radiation oncologist's nurse recommended pelvic floor excercises as a way to get my rectal area to feel better. The physical therapist has incorporated some (not that Kegel excercise you hear about all the time). Those excercises really do cut down on the pain.

So sorry you have to join us, but this is an amazing forum full of good people with great answers. I'm cancer free 19 months after treatment and am pretty much back to pre-diagnosis levels with energy and activities. I credit most of this recovery to pulling a muscle within a month of post-treatment, being referred to an acupuncturist and then a naturopath. Between the two of them, my chemo brain and fatigue are gone, my bowel movements are regular and not painful, amd my gut which used to sound and act like a cistern is calm and non-crampy.

So, if you have the option to see anyone like these two in your area, I can't recommend you do it enough as my two were truly the only way I was able to gain my life, brain, style of living and well-being back to normal.  I have talked with my oncologist and the doc who does my bi-annual scopes about why I am recovering so well, but it seems to go in one ear and out the other.

Sweatpea said:

It is so nice to talk

Thank you Sandy yes it does help to talk. And birdgirl thank u for the ideas I did go to a acupuncture while I was going thru treatment and help so much with the stomic upsets then changed to chiropractor to help with bone and muscle pain after 12 mo past treatment. I would love to go to a natural path but not being able to get back to work I can only afford one total out of pocket doc at a time. I tryed phiscal therapy once and it was way bad. My body losses bowel control when I over do it the only thing I can think of is the pelvic floor just gets way swollen from the stimulation and muscles stop working for me. When I was 40 I was diagnosed with lopus and I didn't want to go down the medical world so I found myself a natural path and and ayrvetic doc and changed my life totaly from food to exercise and of corse yoga. This not only brought me amazing health but when I was diagnosed with cancer two yrs ago I went to my interest to get a look at what my lopus was doing and found out I put in in full remission because I created such health and held it for five years made it turn in to a cusen of lopis called indf. Auto immune disease. That was the best news ever. So I knew in my heart this cancer fight was going to be totaly do able. The first year I was a super star in my doc office everyone couldn't  beleave how well I was doing I was not trying to push myself back to work just giving my skin the time to repair and my mind got perty messed up one year before I was diagnoised I helped my mom at my house as she died from cancer. She  chose not to fight it. Hard to watch but I beleave we all get to do it our way. Sorry I get side tracked easy. My second yr was when things kinda went sideways on me I feel the nerves of my body woke up and were madder then a wet hen and I can't seem to get on the other side. I may have been pushing a little to hard for my body still unsure. But with the help of u wonderful women I am ready to walk into the physical therapy office with the understanding they may not know how to help me and together we can figure it out. Is there anyone out there unable to wair undergarments?? If I do the skin where your leg meets your groin gets all mad and will start an infection if I dont get them off fast. I have tryed all kinds of unders but with no luck. when I asked my doc she didn't think my skin woukd ever get thick unuff for undergarments. At this time I don't even try any more am I giving up on that too soon?? Thank again everyone. 

Hope you were able to pick up the vitamin B shots. let us know how those are working for you, I really do find them helpful, I just got another 12 pack last week. As for the bowel control, I did 3 months of pt for pelvic floor sttengthening post surgery ( 2years prior to chemo and radiation) and it was amazingly helpful, I feel I could use it again however the time and expense right now is not doable for me so I am going to dig out the exercise sheets the therapist gave me and try and do some on my own. As for the undergarment dilema I bought a few packages of mens knit boxers (the t shirt material) and it was either that or commando. You may want to even coat the irritated area with aquaphor, hope you have some relief soon.

Sweatpea said:

Therapy

I think I found someone that is willing to work up what I may need. Feeling very hopeful I feel she realy listened to my needs and using this sight as a reference was grt it ended up she is also a cancer servivor of mouth cancer so I share this linck and she is going to use it for her self so magor connection made today. I live in acquafor I don't think I would have made it thru this far with out it I buy it by the tubes at target. I have tryed men's unders it didn't work even loose pants get in that space between leg and genitails is so irritating. I wair indian poofy pants  they r like putting on a big balloon gathered at waste and ankles the crotch is like below the knees.(sorry I don't know there true name) and it was grt freedom to come out of the house. Being in target in a dress with nothing under it when you have bowel control problems is just the shits (pun totaly used before I thought it out funny) that has happened to me more then once not a good time but it is life sometimes but now that I found these pants I feel like I can go out with less worry I call them my safety nets it keeps my inside world problems in side. My pt thought it is all abt the pelvic floor not tucking in when I stand up she thinks we can fix this I'm in tears as I type this. thank u again for your inceragement and understanding where I was when I found you guys. I will keep u posted now off to town for b12 yay

Do you have a physiologist who can treat the nerve ending pain you are experiencing? I take Lyrica. It is expensive. I hear Neurontin apparently is about the same and a good substitute. Keep complaining! And know we listen and hear you:-)

Are you sure you aren't suffering from Lymphedema?

Who is supervising your PT?

Just wondering.

Good luck.

Sweatpea said:

How it's going

Hello lady's it is going well thanks to you. I do not have a physiologist yet my PT is the first to say any thing abt neropathy and I didn't even think abt that. She gave me some understanding about the pelvic floor. Iam in Oregon and it seems we r behind the curve when it comes to rehab for cancer. I looked into STAR and they r not here yet my PT is looking in to them and seeing what we can maybe get started here.  She has worked under a therapist that is in Portland that suposed to be  know for her ability to help people rebuild there pelvic floor. Not from cancer treatment damage . Iam going to stay with this local PT  in two visitors she has had more ideas than the two years I hv been crying to my cancer docs and primary doc and even my chiropractic doc. So Iam going to see what her and I can do she is having me do a body journal. It feels like the more I pay attion the more I hurt but that can be how much I was just living with now that someone is listening  it is time it stop just living with it and see if we can't fix it. I need to make my next check up with my cancer docs for my two yr check out and I can not wait to share this sight with her and all the new things I am looking at. And on the energy level it is going up I found a vit B12 liquid that seems to be doing the job aswell as a iron sup too. Thank u for the shoulder to cry on and the sights to look into and the  suggestions on what to try. I even have used some wordage to help me out with the PT. chatt soon. T ( when I relized I miss spelled my user name sweetpea to sweatpea I laughed so hard and had to keep it the same because  it was a funny pun and didn't even know it love when funny just happens)

You have gotten a lot accomplished already. Congratulations! Even the outlook in your last post has perked up a lot. You have the right to feel as comfortable as possible and nobody makes as good an advocate for you than you do. In the medical field, it's sad but true that the squeaky wheel gets the grease. Keep squeaking!