Hi everybody

Carole

Hello!  It's so nice to hear from you.  Even though we adore your son and are always glad to hear from him, it's so great to communicate directly with you too!  I'm glad you are feeling better, but sorry the BM's are still causing you some pain.  I experienced pain for a few months after treatment--not all the time, but mostly when I would have a hard BM or get constipated.  I'm happy to say that after those few months ended, things were so much better, and I hope that is the case for you too.  As for tiredness, it can last awhile.  However, I found that exercising boosted my energy level, so I highly recommend a walking program if you're not already doing so.  Even at 6 1/2 years out of treatment, I cannot truthfully say that every day is a good day.  Sometimes I am tired too and sometimes my bowels can be a little on the cranky side, depending on what I've eaten.  I just don't think recovery from this treatment can be a straight line forward, unfortunately.  But overall improvement can be expected as time goes on.  I felt like I really turned the corner at the 2-year post-treatment mark.  Now I know that sounds like a long way off, but it will be here before you know it! 

As for blood with a BM, it happens to me occasionally, even this far out from treatment.  I know it is scary, but as my radiation oncologist explained it to me, the radiation thins the lining of the intestines, causing the blood vessels to be closer to the surface.  Whenever stool passes by, especially hard stool, it can scrape the vessels, causing them to bleed.  It does not mean that cancer has returned, it's just one of the unfortunate results of treatment.  If a lot of blood is accompanying a BM, such as turning the water completely red, then it would probably be time to just run that by your doctor.  However, if it's just a small amount on the tissue, then I do not think it's anything serious.

I continue to use my dilator, although there have been periods of time when I have not been as diligent as I should be, admittedly.  I have heard some posters say that it is not necessary to continue using them forever.  However, I disagree with that.  Case in point:  I had fallen off of my routine of using it and when I went for my last pap smear/gynecology exam, my gyno told me I had some vaginal atrophy and needed to get back to using the dilator on a regular basis.  I have since tried to use it almost daily.  I guess it's just one of the necessary evils we have to deal with, as, if for no other reason, it allows our gynecologists to do pelvic exams and pap smears on us hopefully without pain.  Regarding frequency of pap smears, I truly believe that for those of us who have had anal cancer or any other HPV related cancer, every 3 years is not frequent enough.  I still think yearly is a good idea.  Keep in mind though that radiation treatment can, in itself, cause pap smears to come back abnormal, which does not have any significance.  An abnormal pap smear, however, should be discussed with your doctor and probably repeated after a certain amount of time has passed, such as 6 months. 

As for feeling alone in this disease, I think we can all somehow relate to that.  I know I felt that way!  I recently had the opportunity of speaking to a group of doctors from different countries attending an anal neoplasia conference and share with them my experience with this disease.  One thing I really tried to get across to them was that just because the cancer cells are gone does not mean the disease is gone, as I believe there are multiple components to this disease.  It not only affects our physical health, but also our emotional health, our finances, our relationships, and our activities.  I believe the emotional part of this journey is the most difficult, as it continues long after treatment is over and our burns have healed.  Unfortunately, many doctors feel like their job is to get rid of the cancer and move on to the next patient, without concern about the patient's quality of life afterwards.  That's why I think it's so important that we survivors communicate with each other because we truly understand.  I will say that it gets easier as time goes on.  I still think about cancer every day and how it's affected my life and the life of others, but it does not get in the way of enjoying my life.  I try not to spend time worrying about any of the what-ifs, but I can't say that's always easy.

God bless you and Adam as you continue to navigate this journey.  I understand you are serious about moving to Barcelona and I believe that a change in scenery will be a great way of renewing your spirit and allowing you to move further away from this experience.  When you have thoughts of cancer, give those thoughts a limited amount of time, then hit delete and think about all of the great people and things in your life instead.  I wish you all the best and hope you'll keep us posted on how you're doing.  I send you hugs and good wishes!

Martha

Adam26 said:

Hello Martha
 
Thank you for

Hello Martha

 

Thank you for all your help, it is great to hear how well you re doing - for yourself especially and also as an inspiration for others.

I have been told i have a good attitude to this rotten disease and am doing well, i try my best to just get on with life and not get down about the ongoing side effects but sometimes i feel despair.

 

Can i ask you when you say you felt you had turned a corner after two years what do you mean by that? Was it mentally or physically? Do you ever get to feel the way you were before you had the disease? I don't know if you had the urgency- where you have to rush to the loo, if you did can you say that Has gone for you now? That is my main concern when i go anywhere and we so want to go look for a home in the sunshine, but need to wait for the urgency to get a bit better.

 

I am new to the dilators, was given four sizes in January and am on the third, it is quite a struggle and i have sore skin outside down there where it seems to have healed in a strange way and so splits!

 

Sorry there are so many questions there!

 

I do hope you continue to be strong and healthy, do you have scans now, in England we have them for five years. Well done for doing the marathons did you run before treatment?

 

I won't ask anymore now but will thank you again for being an inspiration to me and others while we are on the mend.

 

Best wishes Carole

Hi Carole!

It's very nice to hear from you and I don't mind the questions at all.  And I thank you for your kind words--I appreciate your good thoughts so very much!

I totally understand having good days and bad days.  I'm not always on top of my game either, even this far out.  Some days I just cannot get out of my mind that I had this terrible disease and it tends to affect my mood.  However, I usually wake up the next day, ready to take on everything that comes my way and I don't dwell on it.  I think the emotional healing definitely takes longer than the physical healing.  I guess when I hit the 2-year mark, I felt like I had re-entered the stream of life, feeling comfortable going places and not constantly worrying about how my bowels were going to behave.  I still, however, make sure I know where the restroom is wherever I go.  There are many things one can do, as I found out by trial and error, to somewhat control the urgency and frequency.  If you are not getting a good probiotic in your system, I would highly recommend it.  I eat yogurt twice daily, making sure to get the kind that has the most cultures in it.  I don't know if Activia is available where you are, but in the U.S. it is widely available and I've found it to be very good--it's my nightly treat.  I also eat Fage plain yogurt with fruit for breakfast. 

As for feeling like I did before I had cancer, I am happy to say that most of the time the answer is yes!  There are some days that I feel even better, as I realize that I was suffering some symptoms of cancer long before it became evident to me that something serious was going on.  I never felt completely emptied out after a BM, had abdominal bloating, chronic constipation, unexplained weight loss and fatigue.  I do not deal with those things now, at least not on a regular basis.  You may already know from some of my previous posts that I do experience partial intestinal blockages, which is the one side effect that causes me much distress and can be life-threatening.  The blockages are thought to be due to adhesions, caused by the radiation.  This is not a common problem for most people who receive this treatment and I hope you'll never experience it.  Other than that, I have accomplished things and attempted things that I never would have done, had I not had cancer.  I guess getting through treatment and being a survivor has empowered me.  At age 61, I still run about 5 days a week and lift moderately heavy weights 2 days a week.  I like feeling strong and the weight lifting does the trick.  It is also very good for the bones and I need all the help I can get.  I am 5' 3" tall and only weigh about 95 pounds on a very small frame, so I am a prime candidate for osteoporosis and osteopenia, which have both been confirmed on bone density scans.  Those findings have made me even more determined to keep active.  I highly recommend weight-bearing exercise for anyone who has undergone pelvic radiation to preserve bone health.  It's as simple as putting on some good shoes and walking.

As for using dilators, I'm afraid it's an evil necessity.  I also suffer from pain with their use, but try to keep very regular at it.  Of course, a good lubricant is necessary and I use Astroglide, which is water-based.  Some women find that coconut oil is very good and I use some of that too, as it's very good for the vaginal tissue.  I think the dilators require lots of patience and regular use.

As for scans, doctors are all over the place on that.  I'm glad that you will have them for 5 years.  Despite the additional radiation, I do think they are the only way to find some things, hopefully early enough to be treated, whether it's by surgery, chemo or a combination.  In the U.S., doctors seem to be all over the place when it comes to scans.  Some people rarely get them and others, like me, are still getting them almost 7 years out of treatment.

As for my running, yes, I was a runner before I was diagnosed.  I also weight trained.  I was about as healthy as a person could be except for that anal tumor!  I have always eaten pretty healthy, but I do admit to having quite a sweet tooth and have never been one to deny myself when I really crave something.  I think it's all about balance.  I still try to eat healthy, but with the occasional obstructions, I have sometimes had to cut down on the amount of fruits and veggies, as they are the biggest culprits when it comes to blockages.  I get very frustrated sometimes, wondering what to eat and what foods might put me over the edge, but at least right now, I am doing okay.

Please come here any time to ask me questions.  One thing I will say is that many of the people on this site probably have better recollection of things than I do, as it's been almost 7 years since my diagnosis.  Some of those memories have faded away, which I don't necessarily see as a bad thing!  However, I will give you what information I can.  I guess I'm the old timer here.  I'm sure many of the posters who are more recently out of treatment than I am have some newer insight when it comes to dealing with side effects, both during treatment and after.  Joanne Dukes, the woman who got the American Cancer Society to add a board for anal cancer on this site, was a wonderful person and I know she would want someone with some years behind them and their treatment to continue to post here, which is why I do.  I miss Joanne, but know she is watching over all of us.

Take care, keep moving forward, try some exercise and probiotics, and find what works for you.  With a little trial and error, I'm sure you'll be able to do just that!  May God bless you and Adam as you make plans to find a new home.  I'm sure many exciting adventures await both of you in Barcelona.  I wish you both all the very best.  Take good care.

Martha 

Adam26 said:

Hi Martha, thank you very

Hi Martha, thank you very much for writing. I Am sure that your information on the web site is very much appreciated by everyone,  i certainly find it so helpful.

I have been told by the doctors that i have a good attitude to the disease and recovery but as you know there are still the bad days when you think about what you have been through etc - i find distraction the best answer and being with positive people. There are so many people who recover from cancer i think of them. It certainly does affect the mood when you think aboutthe terrible disease and sometimes i worry about it coming back.

I am still at the stage where i constantly worry about how my bowels are goingto react, i am ostly so careful about what i eat and always think to myself- is that low residue? 

I still have pain when i have a bm but i think that is normal for 6 months past treatment, i feel the pain is getting less over the months and hope will eventually go.

I have been having a probiotic and have taken your advice and started having activia yogurt.

My energy is getting better, i seem to have more energy when the weather is warmer! Since i had the treatment i sometimes get very cold especially my hands and cannot get warm again, i guess this is a side effect and will get better too.

It must be great to be able to run,how far do you run, i ran across the park with Rosie our dog today but that is about my lot! Does walking help to maintain the bone density, any distance?

I Am so pleased that you say you feel normal now, can you say how long that normal feeling takes to come back?

 

I wish you the very best. Carole

Hi Carole!

How nice to hear from you again!  I totally agree that surrounding yourself with positive people is the key to not letting this experience drag you down and I hope you have many of those kind of people in your life.  I have ditched some of the people who I've known for decades just because they drain me emotionally. 

I think you are going to continue to progress forward and will see improvements with time.  It's normal for you to want to just get past all of these issues--we've all felt that way.  Patience is key.  I hope the Activia yogurt will help with your bowels.  Whatever probiotics it contains have certainly helped me--and it tastes good!

As for my running, I probably put in about 15 miles per week on my treadmill.  I ran a full marathon back in 2012, but am not able to do that anymore, due to some hip and knee pain.  I am perfectly content with my current mileage--just enough to stay healthy and feel fit.  Walking is probably the best exercise you can do for your bone density.  As for distance, start with short distances and work your way up.  I like to walk at least 4 miles when I choose to walk and it normally takes me about an hour to cover that distance.  A brisk pace that still allows you to carry on a conversation is a good measure to use.  Also, there are good exercises that will help strengthen your bones, such as when standing next to a counter, stand on one leg and do not hold on.  The counter is there for you to grab if you begin to lean.  This exercise puts your weight on one side at a time and weight bearing exercise is very good for keeping our bones strong.

As for how long it takes to feel normal again, I think that varies from person to person.  I do, however, think a lot of it has to do with how much effort we put into getting ourselves back to normal.  There have been lots of times over the years since treatment that I have not felt like getting on that treadmill or lifting those weights, but make myself do it anyway.  And the end result is I always feel better after I've done it. 

I know you can work through all of the remaining issues and I wish you all the best with that.  You have the right attitude and, of course, with Adam as your number one support person, you will do great!  Take care.

Martha