New to the site
Hello to all of you on the site-I just found the site 2 days ago, and have been reading all weekend, and I am so grateful for this site being here.
I am a 55 year old physician, and I just found out 2 days ago I will be starting radiation and chemotherapy for stage III anal cancer on April 29th. I went to see my doctor December 2011 for something near my anus that I was worried about and knew wasn’t right. He said it was a hemorrhoid, and gave me some suppositories for it and since I hadn’t had my screening colonoscopy yet (I know better), he referred me to get that done. The doc doing my colonoscopy said I had a hemorrhoid too, and he didn’t do hemorrhoids. I figured I was just over reacting to the thing on my butt, and since I couldn’t get as close as they could, I was ok with what they told me. Over the next year the thing just got bigger, itched, bled, and was driving me nuts, and nothing was making it better, so I went back to my primary doc, and he decided to take it off in his office in January this year. The 2nd morning after he removed it I woke up to what looked like a crime scene in my bed, and the area had bled during the night. A week later I went in for follow up and he told me then that it was squamous cell cancer, but it was well differentiated, and no cancer at the base, so it looked like he got all of it. He also said there were a couple small bumps in the area, and he wanted me to see a surgeon. The surgeon took a quick look, and I thought he was going to say he could buzz those other ones off and call it good—he said he wanted to talk to the Oncologists, and see if maybe radiation would be the best way to go. I was confused then—I thought that would be over kill. I admit I didn’t know what I was dealing with. He said he would call me after he talked to the oncologists. Next thing I know someone else calls to tell me that I have a PET/CT scan scheduled for last Thursday (today is Sunday), and that I was going to see the radiation oncologist, and the hem/onc after that on Friday. I was wondering what all the fuss was about.
The rad-onc met with me and said I had stage III cancer, as the PET scan showed nodes lighting up in my pelvis, but they weren’t enlarged, and that I would need to start radiation 5 days a week for 5-6 weeks, and maybe chemotherapy depending on what the heme/onc recommended. I got tattooed while a slurry of appointments were being made for me, and I was handed a few packets of info. I have to get a PIC line put in, have ANOTHER colonoscopy, have a radiation planning appointment, and start chemo and rad April 29th. I am working Monday night, and have the colonoscopy scheduled Tuesday afternoon, so I am trying to figure out when to drink the two bottles of colon blast and not be soiling my scrubs at work, or having to pull off the highway on the trip home and have a BM.
Friday afternoon I headed down the road 200 miles to work feeling very surreal, and kind of in a fog. Before I went to the hospital I searched on the internet anything I could find about anal cancer, and then I started to realize what all the fuss was about. I haven’t had a chance to talk to my family, kids and I don’t want to talk to co-workers about this yet. My girlfriend is the only one who knows so far. I am a little freaked out---wondering if I am going to be able to work through all this, if my girlfriend is up for this, if my insurance is up for this…I never thought this would happen. I never thought I would be posting to a support website. It kind of feels like a bad dream at times
I appreciate this website, and any advice. bill
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Hi Bill--
I am SO sorry you have gotten this diagnosis and that you had to seek out this site. However, this is a great place for support, so I'm glad you've found us. We have never had a member who is a physician (atleast that I know of), so let me just say first off, we put a lot of information on here that is based on our own personal experiences, not necessarily on information out of medical journals--or our doctor's mouths! Some of the best information on getting through this treatment and beating this cancer comes from those who have been there, done that. Sometimes battling the side effects is a trial an error experience, but we all try to offer suggestions on what has worked for us. Please forgive me for saying this, but sometimes the doctors just don't have the answers. That said, we are here to help you and get you through this.
Your story is familiar to many of us. My internist misdiagnosed my cancer as a hemorrhoid also. And, like you, I had been putting off that dreaded age-50 screening colonoscopy. My bad! My internist scolded me for putting it off until I was almost 55, so she said see a colorectal surgeon who can do the scope and take care of that "hemorrhoid." I went for my meet and greet with the CR doctor and, after taking my hx and hearing my symptoms, she decided to do an anoscope on me that day. She immediately told me she was 99% sure I had cancer. The rest is history. But here I am, almost 5 years later, doing very well. That is my hope for you and everyone else on this board. Going back to misdiagnosis, it is SO common with this cancer. Many of our stories began the same way as yours. I think lack of awareness in both the medical community and the general population contributes to this. We obviously do not get the attention that breast cancer gets. I guess no one wants to think about anuses. And with less than 7,000 cases predicted in 2013, the numbers for awareness just aren't there.
The following are a few good websites that I can recommend to you for information and additional support.
www.NCCN.org As a physician, you will find this site very informative and you'll probably understand much more of the info there than most of us. It outlines treatment and follow-up guidelines for anal cancer. You'll have to register first, but that will give you access to all of this information.
www.analcancerfoundation.org There are lots of good links to other websites here.
www.analcancerhelp.info This website was started by a virtual friend of mine who is a survivor of anal cancer. There's lots of good info here too.
www.rare-cancer.org This is a forum-style site where you'll find threads on many topics with helpful information.
As for prepping for a colonoscopy while being on the job, I can't help you there, only wish you the best. When I prep for those things, I might as well camp out in the bathroom. I would definitely suggest having a couple changes of clothes with you.
I was not employed during my treatment, so I can't answer your question about working through this. I know many people do, at least until towards the end of treatment, when the side effects become cumulative. Also, I urge people to take the pain meds prescribed, which might impair you and prevent you from working. However, keeping the pain at bay is important. I did not do that and have regretted it many times. I took only minimal pain meds so I could drive myself to rad treatment every day. I DO NOT recommend that!
As a physician, I'm sure you are aware of the importance of staying well-hydrated, so plenty of fluids are important. Diarrhea is a common side-effect, so replacing fluids lost is critical.
Okay, I won't bombard you with anymore info at this point. I hope you'll come on here anytime you need some information or support. Again, we are here for you. It won't be a fun time, but you will get through it, as all of us have. Let us know what you need from us and we'll do our best to help. I wish you all the best!
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Bill158
I'm so sorry for our diagnosis. Unfortunatley it is all too familiar. My doctor treated me for a so called hemrrohoid. I am unemployed and no way of paying of a colonoscopy (I'm 54). I ended up having one anyway and viola' cancer. In fact my doctor said, "how did you know". So I went through the chemo and radiation and I'm 4 months post treatment.
I do understand when you wonder about your girl friend. I have a boy friend and I freaked when I got the diagnosis and wondered if he would be able to handle it. I wondered about my kids too. Well, they all were extremely supportive. My boyfriend has a hard time handling issues, but he came through with flying colors and is still supportive. So I'm sure your girlfriend, family and friends will be supporitve as well. Just let them be there for you.
Again, I am unemployed so dealing with the wonderful colon "drink" while you are at work is something I don't know. I do know you are a doctor but would you be able to take the night off? Probably a dumb question.
Well, this site is awesome. I'm a bit new myself and everyone here is wonderful! I don't know what I would do without them. Everytime I have a question or concern someone is always there to help.
Hang in there!
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Bill
I'm sorry ur here but glad u have us as support. We can hear it all ... Hang in there. Wishing you strength. Be sure you get to a cancer center familiar with anal cancer. It is particularly important that your rad Onc is skilled at treatment planning for anal cancer ESP if using IMRT and I believe u want IMRT. Must be skilled in order to cover the area and decrease likelihood of "marginal miss".
A big supportive hug to u ....
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DxBarb5454 said:Bill158
I'm so sorry for our diagnosis. Unfortunatley it is all too familiar. My doctor treated me for a so called hemrrohoid. I am unemployed and no way of paying of a colonoscopy (I'm 54). I ended up having one anyway and viola' cancer. In fact my doctor said, "how did you know". So I went through the chemo and radiation and I'm 4 months post treatment.
I do understand when you wonder about your girl friend. I have a boy friend and I freaked when I got the diagnosis and wondered if he would be able to handle it. I wondered about my kids too. Well, they all were extremely supportive. My boyfriend has a hard time handling issues, but he came through with flying colors and is still supportive. So I'm sure your girlfriend, family and friends will be supporitve as well. Just let them be there for you.
Again, I am unemployed so dealing with the wonderful colon "drink" while you are at work is something I don't know. I do know you are a doctor but would you be able to take the night off? Probably a dumb question.
Well, this site is awesome. I'm a bit new myself and everyone here is wonderful! I don't know what I would do without them. Everytime I have a question or concern someone is always there to help.
Hang in there!
I am very sorry to hear of your diagnosis.
I am using magnesium citrate for prep. This would not interfere with your work. You do not have to take the ducolax midday. I start eating lighter a few days before. Follow the low residue diet. Believe me so much easier and controllable.
I wouldn't work unless I had a desk job.
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Same As You
I felt the same as you when the doctors told me I had anal cancer. I felt like I was in a fog and it was not real as I had never really been critically sick a day in my life. I was 58 years old at the time of diagnosis. Everything was on an accelerated pace with all the tests and doctors appointments before treatment. That was the longest most stressful two weeks in my life. Once I started the treatments everything became routine. I did not sleep for those two weeks even though the doctors presribed sleeping medications. Nothing worked. Once treatments started I looked upon them as a job as I am retired. I was diagnosed in November 2008 and finished treatments in January 2009. I see my colorectal surgeon for my annual check up next week. So far I am NED.
Additionally, the colon prep instructions for me was to take the pills and drink the gatorade around 4:00 P.M. The "cleanout" process lasted about 3-4 hours. By 8:00 P.M. the bathroom "urge" subsided.
Hope this helps.
Mike
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Billmxperry220 said:Same As You
I felt the same as you when the doctors told me I had anal cancer. I felt like I was in a fog and it was not real as I had never really been critically sick a day in my life. I was 58 years old at the time of diagnosis. Everything was on an accelerated pace with all the tests and doctors appointments before treatment. That was the longest most stressful two weeks in my life. Once I started the treatments everything became routine. I did not sleep for those two weeks even though the doctors presribed sleeping medications. Nothing worked. Once treatments started I looked upon them as a job as I am retired. I was diagnosed in November 2008 and finished treatments in January 2009. I see my colorectal surgeon for my annual check up next week. So far I am NED.
Additionally, the colon prep instructions for me was to take the pills and drink the gatorade around 4:00 P.M. The "cleanout" process lasted about 3-4 hours. By 8:00 P.M. the bathroom "urge" subsided.
Hope this helps.
Mike
Bill,
I'm glad you found this site, but of course I and the others wish you never needed to in the first place. Martha has provided a lot of info and links which I think you will find helpful. I think many of us were in the same "fog" when we first were told we had anal cancer. I was diagonsed two weeks after Farrah Fawcett died of anal cancer. I remember listening to the news about Farrah and wondering, "anal cancer...what the heck". Ironically I learned much more than I ever thought I needed to a few short weeks later.
I was also Stage III with pelvic lymph node involvement. I did not work during treatment. I had a high pressure job requiring a lot of hours and a lot of stress. But I also went out of state for treatment to MD Anderson in Houston, so working was not an option. Looking back, I think I might have been able to work the first week or so, but after that no way. The side effects of chemo and radiation on bowel movements, energy level, etc. would have been too much to combine with working.
It will be a very vigorous and hectic 6 weeks. It's not easy by any means, but it is doable and there is light at the end of the tunnel. As you probably know, the effects of chemo and radiation are cumulative, so it gets harder toward the end of treatment.
I trust that you are being treated by doctors that are familar with anal cancer treatment. Like many, I was mis-diagonosed early on (they told me I had rectal cancer and were going to treat it very differently than anal cancer. They even planned on doing a ilestomy which turned out I did not need. Long story short, I was not pleased with my local doctors so we packed it up and went to Houston, which was a very good decision.
There are many people here who can provide you with support a long the way. I wish you the very best and pray that you will have a healing journey to recovery.
Liz
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Bill
I lived in that fog forBill
I lived in that fog for months. I didn't spend much time researching after my initial diagnosis and I didn't spend much time on this site until after my treatment was over - I was just so freaked out, definitely hanging on by a thread. It might have been helpful for me to be here sooner but I didn't think I could handle any more info. I was so fortunate to not be mis-diagnosed. My primary care dr. and the gastroenterologist both jumped right on the possibility of cancer and not hemorrhoids. I was treated in my hometown, didn't even really consider going elsewhere. I'm really glad I stayed home with my friends surrounding me. I didn't work for 7 months and have just been back at work part-time for the last 6 weeks. It's really hard. I don't think I could have worked during treatment - I was knocked flat by the chemo the day after my treatment began in September and didn't feel anything close to normal until maybe February. I had 7 weeks of radiation and the 2 rounds of chemo. I also had prior to treatment a surgery for an unrelated (maybe? I think it was somewhat related) gyno problem.
I'm so sorry that you're going through this. I thought the treatment was both hellish and bearable at the same time. And I just lived it one day at a time.
We are all here for each other. Wishing you the best.
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Bill
I am 2 weeks out of treatment for stage IIIB.
There are a lot of different experiences/side effects you will find on this site and it has been good for me to keep reading (ableit sometimes with one eye covered!).
As far as work goes, I immediately went to "light duty" which meant a boring desk job. My onc said max 6 hours a day, I was disappointed in that but found that I would not have been able to do any more after treatment started and even now sometimes can't make it to my 6 hours due to fatigue.
As others have said, it is a brutal 6 weeks but it is doable.
I wish you luck and better health in your journey!
Kris
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Ok guys! I DID have my
Ok guys! I DID have my colonoscopies right on time... I was only a couple years out from a totally CLEAN colonoscopy when I was discovered to have anal cancer.. It was large and had been growing for a while. Wa it missed? Whom knows but I'm 18 months NED!
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loricatLorikat said:Ok guys! I DID have my
Ok guys! I DID have my colonoscopies right on time... I was only a couple years out from a totally CLEAN colonoscopy when I was discovered to have anal cancer.. It was large and had been growing for a while. Wa it missed? Whom knows but I'm 18 months NED!
hey, i had had colonoscopy Nov. 2008 and was complaining of bleeding , pain, etc with a bubble on outside of anus...colonoscopy came back clean and all ok ....diagnosed correctly march 2009 just 3.5 months later....yes, it was definitely missed by the scope.....shame on my procyologist for not knowing what that ulcer was and biopsying it at time of colonoscopy...... most of us are misdiagnosed.....lack of info..... hugs sephie
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Me too. I've had 2 since ILorikat said:Ok guys! I DID have my
Ok guys! I DID have my colonoscopies right on time... I was only a couple years out from a totally CLEAN colonoscopy when I was discovered to have anal cancer.. It was large and had been growing for a while. Wa it missed? Whom knows but I'm 18 months NED!
Me too. I've had 2 since I turned 50. I have a brother who's a colon cancer survivor so all of us sibs are on the 5 year plan fo colonscopies. I had one in 2010 and was diagnosed with anal cancer (a 5 cm tumor) in July 2012 so I don't think it was missed. Who knows? And what counts now is NED.
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Bill
I am sorry that you have to go through this, but it is good thst you found this site. Your journey sounds sadly familiar. I was misdiagnosed for years by a series of specialists who were supposedly the best in their field in this state. Seems that something in plain sight would be easier to diagnose.
I trust that you have found a good cancer hospital? It matters, as you know. I am 2 years post treament for stage 2. The treatment was not nearly as bad as I had anticipated, but it is no day at the beach. As a doctor, you know that no 2 patients respond in exactly the same way.
As far as work goes, I would say that I could not have worked after the second week. I think it would be ideal if you could take a couple of months leave of absence. You need to take care of yourself now.
You will be in my prayers. You can do this! There are many here who can Help you as you go through this. All will be well. All will be well.0 -
ThanksMarynb said:Bill
I am sorry that you have to go through this, but it is good thst you found this site. Your journey sounds sadly familiar. I was misdiagnosed for years by a series of specialists who were supposedly the best in their field in this state. Seems that something in plain sight would be easier to diagnose.
I trust that you have found a good cancer hospital? It matters, as you know. I am 2 years post treament for stage 2. The treatment was not nearly as bad as I had anticipated, but it is no day at the beach. As a doctor, you know that no 2 patients respond in exactly the same way.
As far as work goes, I would say that I could not have worked after the second week. I think it would be ideal if you could take a couple of months leave of absence. You need to take care of yourself now.
You will be in my prayers. You can do this! There are many here who can Help you as you go through this. All will be well. All will be well.Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
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Hi Bill!Bill158 said:Thanks
Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
I'm glad that your director is going to adjust your schedule while you are in treatment. While the chemo/rad only lasts for 6 weeks, it can cause a myriad of side effects. I had extreme fatigue that began almost immediately. Soon, other side effects kicked in, including diarrhea, thrush and lack of appetite. Of course, everyone is different and my hope is that you will have minimal side effects. Some can certainly be managed better than others.
As for telling family, I don't have any kids, so that wasn't an issue for me, so I can't give you any advice about that. However, my mother was 83 years old at the time of my diagnosis and I knew she couldn't handle hearing such news, so I didn't tell her until I was a couple of months out of treatment, which was totally doable since she lives over 600 miles from me. I guess we all have to handle our own situations in whatever way we think is best. Some kids can probably handle things like this better than others, I just don't know.
Good luck on your scope today. I hope all goes well. Enjoy the rest of your week as you count down the days until you begin treatment. I found the waiting for things to get going to be the worst and was actually relieved when treatment began. You will get through this and we'll all be here for you any time you need us! Best wishes!
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Welcome....Bill158 said:Thanks
Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
I am sorry to have to welcome anyone to this site, yet glad we have a place like this. I am 2yrs post treatment for Stage3b and doing great. I am 54yrs old and have 5 children, now 20-26 yrs old and 6 gransons under 5yrs!!! At the time of diagnosis one of my daughters had just started college away from home, one was pregnant with no daddy in the picture, one was pregnant with the daddy deployed in afganistan and a two yr old at home, well.....you get the pic, a lot going on. Oh, and my husband had just undergone a stem cell transplant for multiple myeloma (later to have a bone marrow transplant). What I'm getting at is, they all had "life" happening yet when I told them, they did not stop what they were doing but did it better. The strength that is gained through a cancer experience is not just in relation to the "patient" but so much more in the ones we love, (at least it was in my family). They were already close, but became closer, they became more aware of what was really important in life, and our family now is thriving like never before!! Friends and teachers helped if any school issues came up, but none really did, employers were helpful with work schedules for those working. I know I was blessed and not everyone is so lucky to have the help that I did with my family, but don't doubt their strength in handling this, talk to them with confidence that you will be well soon, but need to just get through this difficult time.
I will have you and your family in my thoughts and prayers.
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Bill158Bill158 said:Thanks
Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
I didn't tell anyone for 7-10 days (I did get on this site however). It was a lonely first week. I did not tell anyone because I did not have the answers to the questions they were going to ask, I did not have the answers to my own questions!
I raised my boys alone, we are a tight knit, trusting, honest crew and normally share information accordingly. I felt bad keeping this from them but when I was able to sit down with at least some answers for them, I received the response I expected which was 100% love and support. My oldest is a cancer survivor himself, he lives with me and probably always will due to the type of treatment he received "back in the day". My youngest has a very busy life with a wife, 2 kids, job and school but he is not too busy to call me or stop by daily which has been terrific. Although it is not a secret I would have ever even considered keeping from them, I am glad I waited a little bit and at the same time glad everything is out in the open now. You will know when the time is right and I'm sure your kids will respond with caring concern.
One day at a time, one foot in front of the other!
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Talking to childrenBill158 said:Thanks
Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
Bill, i was diagnosed the night before Thanksgiving and my daughter, who was 20 at the time, was literally on a train on her way home from college. As a divorced mom, I raised her alone and it was just the two of us. I had to think fast and I made the decision not to tell her until I had complete information and was about to start treatment. I made the calculation that she would be able to go back to school and finish her semester by the time they were ready to start treatment. We celebrated Thanksgiving and she went back on the train to college. Ironically, on the night she was on her way home for Christmas, I was admitted to the hospital after a complication . I begged them to release me before sunrise so I could tell her before she found out from someone else. I did make it home and when I told her she was completely overwhelmed and very hurt that I had chosen to leave her out. I am not sure whether she has forgiven me to this day. She felt that she should have been the first to know, not the last to know, and could not understand why I didn't want her with me during treatment. I persuaded her that I needed her to go back to college and study hard while I went through treatment. She did go back, but was very reluctant and hurt. i kept up a good act when I spoke to her on the phone. I did not want her to see me suffer.
I don't know if I would do things differently if I could go back. I hope that someday she understands that my decisions were guided by love for her.0 -
Bill 158BBdogs said:Bill158
I didn't tell anyone for 7-10 days (I did get on this site however). It was a lonely first week. I did not tell anyone because I did not have the answers to the questions they were going to ask, I did not have the answers to my own questions!
I raised my boys alone, we are a tight knit, trusting, honest crew and normally share information accordingly. I felt bad keeping this from them but when I was able to sit down with at least some answers for them, I received the response I expected which was 100% love and support. My oldest is a cancer survivor himself, he lives with me and probably always will due to the type of treatment he received "back in the day". My youngest has a very busy life with a wife, 2 kids, job and school but he is not too busy to call me or stop by daily which has been terrific. Although it is not a secret I would have ever even considered keeping from them, I am glad I waited a little bit and at the same time glad everything is out in the open now. You will know when the time is right and I'm sure your kids will respond with caring concern.
One day at a time, one foot in front of the other!
Hi Bill, I am sorry that you have found it necessary to find this support group, & I am sure you are still reeling from the diagnosis. I had wanted to wait until I had my diagnosis firmed up hefore telling her, but circumstances meant I had to tell her even before my biopsy. However, although she was already und3r considerable pressure already, she would not have thanked me for not telling her. But you know your own children, & use that knowledge to determine whether & when to tell. I completed my treatment on 25th January for s5age 3 anal cancer, & have just had my first follow up examination under anaesthetic yesterday. Although the treatment is gruelling, I tolerated it fairly well. However, I would have been unable to work during treatment. I was ok for first couple of days, but then the fatigue kicked in big time, and I would nod off mid conversation (according to my daughter). I still struggle with fatigue, but that was my main symptom prior to diagnosis anyway. I am noticing improvement though & am getting there bit by bit & able to eat most of what I could before treatment. I looked at what h3lped people during treatment, & shopped before trea5ment began. I wlso followed a low fibre diet which helped. I did try some cream, but did not find it helpful for my burns, hut used a portable bidet and salt water. Whether due to that or not, although I burned, it was not as severe as others I have read about. I was off painkillers a couple of days after treatment ended, and never needed to ta more than co codamol. If you have any questions, I'm sure there are enough of us male & female to chip in. Remember, this treatment is harsh, but doable, and is for a relatively short duration. Good luck Bill, Regards, Liz
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Telling your kids and familyBill158 said:Thanks
Thanks to everyone for all your comments--this all really helps. I have talked to the ER director, and going to try just doing some weekends while I am having treatments, but I did let him know that this may be too much after a while based on what i have read here and from everyone's suggestions. The weekend seemed to drag on forever, and now I'll be heading home in the morning to get my scope done tomorrow afternoon. Think I'll wait to drink the last bottle of Colon Blast until I'm close to a bathroom---that stuff works REALLY fast.
I have also been wondering about telling my kids and family about what is going on--i have two grown kids, and two kids in high school, 16, and 15 years old--i don't want them to worry as they are both doing so good in school, and I am afaid it will distract them. Any thoughts on this part?
I was worried about how and when to tell my daughter who was 27 when I was diagnosed. I'm in California and she had been back East for college and work for a number of years. She's been back in Calif. the last two years attending grad school but last summer when I got my diagnosis she was in Brooklyn with her boyfriend and was on her way to Amsterdam for a language course. We wouldn't see each other for several months. I felt I had to tell her - we're very close. It was hard telling her over the phone. She cried so much she clogged up her phone and she couldn't hear me. I was so glad her boyfriend was there with her. She went off to Amsterdam and on her way back to college she came to see me. I had started treatment and was in pretty bad shape but it was good for both of us. She came to see me on a few weekends and during my one really bad week (the one after my final radiation treatment) when I needed a transfusion, neupogen shots and daily hydration appts. she came and took care of me. The person I worried most about telling was my 86 year old mother, herself a melanoma survivor. I just didn't want her to think about another one of her children being sick but she seemed to take it well and just asked me to keep calling her so she'd know I was okay.
I told all my siblings in a group email which seemed a little impersonal but I had to think of what was most expedient and least taxing for me. I told them all to call me after. Only one of my siblings lives anywhere near me and he really came through for me. He came over just to hang out and when I had to move in the middle of my treatment he came and packed boxes and then came again when my daughter was here and the two of them put my whole house together for me. I got lots of support from all of my siblings, phone calls, email, goofy cards, goody boxes in the mail. Lots of love.
I think even your teenagers can deal with this. It may distract them some but life can do that to you. I'm sure they love you and want you to get well and will want to do something to help you. I have a friend who sent her daughter off to college in another state after she'd had 2 surgeries and just before she began a yearlong combination of radiation and chemo for a different cancer. I think of her as my cancer mentor. For them the cancer is just a part of what is normal life for them. And that normal life included her daughter graduating from high school and flying out on her own to start college.
Tell people at your own pace. Give them as few or as many details as you feel comfortable doing. At first I told few friends and colleagues but over time I told more people and became more comfortable with talking about anal cancer. If they asked, I told and I got bossy about HPV vaccines and anal cancer screening. I surprised myself.
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Hi Bill
This site Really helped me I didn't know any one who ever had anal cancer.I'am 59 and 2 years out of treatments. I didn't work and i don't think i could have .It takes a lot out of you.My Dr said i had Hemorrhoid's too . I have 2 Kids 38 and 41 years old. They were such a big help to my husband and i .Were here for you ....Shirley
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