newly diagnosed squamous cell anal cancer

pacificnw

Looking for anyone to give insight. Met with onconogist today. He made it sould like I would probably be able to work during chemo and radiation. I figured there was much more to learn. I'm glad I found this place. I was just diagnosed stage 2. Have had CT of abdomen, stomach and pelvis and bloodwork, which hasn't presented any red flags. After reading about reactions to treatment I am terrified. Is there hope?

mp327

pacificnw

Welcome to this wonderful site for information and support.  However, I'm sorry your diagnosis has brought you here.  I can understand your fear and feelings of uncertainty--I was in that spot in 2008.  I was diagnosed with an anal tumor that was right on the fence between a stage 1 and 2, with no spread, as per initial staging PET scan.  I am still here 9+ years later and doing well, so please take that as a big dose of encouragement!  Anal cancer has a high rate of successful treatment, much more so than other types of cancer.  So you should be very hopeful.

I was fortunate in that I was not working at the time of my diagnosis.  But I will be honest with you, had I been, I would have had to take some time off towards the end of the 6 weeks of treatment.  I could not have worked, due to my side effects.  That said, there are some people who fare better and do continue to work throughout the entire course of treatment.  Perhaps you will be one of the fortunate ones.  However, you may want to make some preliminary arrangements through your employer in the event you must take a break.  This is not an easy treatment, but is of short duration--6 weeks maximum.  Recovery time can vary.  I will say that by the 10th. day post-treatment, I was feeling much better.

Side effects vary from person to person.  However, there are many things a person can do to avoid them or lessen their severity.  That is why it's good you have found this site.  We can give you lots of feedback on what works to manage side effects.  Please come here and tell us what information you need and people will respond.  The following website can give you lots of good information on this, so please check it out.  http://www.analcancerhelp.info/

Also the Anal Cancer Foundation has a website with lots of helpful information and support.   https://www.analcancerfoundation.org/

I encourage you to learn as much as you can about this disease and treatment so that you can communicate effectively with your doctors and know what lies ahead.  Hopefully, becoming more informed will allay some of your fears.  Come here with your questions.  We are here to support you!  You will get through this, you will.  Please know that I wish you all the best.

Mollymaude

Pacificmw

Welcome to the site. Mp327 has summed up everything I would have said. Educate yourself on this illness is the best advice. Since it is an uncommon cancer I have found a lot of answers  this online community where so many people can share experiences. The big take home message is that your prognosis is excellent, no spread of the cancer so 90-95 % chance you will do this treatment and the cancer will be gone and never return. Treatment is rough but doable. And shorter than some other cancer treatments. As to being able to work during treatment, I was lucky enough to have a lot of sick leave built up so I did not work during treatment or the two weeks following. My oncologist left it up to me as to if I felt I was up to working and filled out my FMLA paperwork for me.  Good luck in your treatment and I hope you keep us posted and let us know how you are doing.

pacificnw

mp327 said:

pacificnw

Welcome to this wonderful site for information and support.  However, I'm sorry your diagnosis has brought you here.  I can understand your fear and feelings of uncertainty--I was in that spot in 2008.  I was diagnosed with an anal tumor that was right on the fence between a stage 1 and 2, with no spread, as per initial staging PET scan.  I am still here 9+ years later and doing well, so please take that as a big dose of encouragement!  Anal cancer has a high rate of successful treatment, much more so than other types of cancer.  So you should be very hopeful.

I was fortunate in that I was not working at the time of my diagnosis.  But I will be honest with you, had I been, I would have had to take some time off towards the end of the 6 weeks of treatment.  I could not have worked, due to my side effects.  That said, there are some people who fare better and do continue to work throughout the entire course of treatment.  Perhaps you will be one of the fortunate ones.  However, you may want to make some preliminary arrangements through your employer in the event you must take a break.  This is not an easy treatment, but is of short duration--6 weeks maximum.  Recovery time can vary.  I will say that by the 10th. day post-treatment, I was feeling much better.

Side effects vary from person to person.  However, there are many things a person can do to avoid them or lessen their severity.  That is why it's good you have found this site.  We can give you lots of feedback on what works to manage side effects.  Please come here and tell us what information you need and people will respond.  The following website can give you lots of good information on this, so please check it out.  http://www.analcancerhelp.info/

Also the Anal Cancer Foundation has a website with lots of helpful information and support.   https://www.analcancerfoundation.org/

I encourage you to learn as much as you can about this disease and treatment so that you can communicate effectively with your doctors and know what lies ahead.  Hopefully, becoming more informed will allay some of your fears.  Come here with your questions.  We are here to support you!  You will get through this, you will.  Please know that I wish you all the best.

mp327

Thank you so much for your words of encouragement. The links are helpful, I will start to read up. I am anxious to learn what I can do to prepare for treatment. It sounds like working with kids may not be the healthiest environment during treatment. I have a child care center and I think I might plan on staying away since we are entering the cold/flu season. Thank you again!

eihtak

pacificnw...

Hi, and welcome to our family (that we didn't choose to be in but is still one of the best)!! I won't repeat what has already been said, but do know that we all react different to the same treatment. I was dx in 2011 and did not work during treatment. My dx was stage 3b and required surgery to have an ostomy prior to chemo and radiation. The combination as well as overall poor state of health at the time landed me in the hospital and then skilled nursing home temporarily. (Know that this is not the usual and that I'm not trying to scare you, just to present another experience and to encourage you to consider not working if at all possible). Sometimes this is not an option, so if you must, take precautions as your immune system will be low and fatique will be high. (I see you mentioned working with children and maybe staying away...I hope this works for you.

This is a tough course of treatment, but somehow we all seem to push through and you should be confident that you will as well. This site is an amazing source for tips and support from others who have been or are going through this with you.

I will keep you in my thoughts and prayers as you proceed. Please continue to post and know that you are not alone in this.

katheryn

pacificnw

eihtak

Thank you. I can't tell all of you how reassuring it is to know I'm not alone out here. I do have a question that perhaps you could help me with. Are there things I can prepare or buy before treatment begins that might be helpful to have around? I've definitely decided not to work. I do have a 21 year old special needs son (Fragile X Syndrome) at home who I want to save my energy for. Any advice would be appreciated. Thank you again!

mp327

pacificnw

I'm glad you have decided not to work during treatment, especially since you work around children, who, as we know, are little petrie dishes with lots of germs.    The treatment will most likely have an effect on your immune system, making you susceptible to illnesses common among children, such as colds and the flu.  With a compromised immune system, these usually minor illnesses can suddenly turn into something serious, so you've made a good decision.  I was very careful to wash my hands whenever I was in public places, including the hospital and treatment center. 

As for getting prepared for treatment, my oncology practice set up a meeting for me with a nurse prior to treatment to go over lots of information, including common side effects and how to deal with them.  I was also given prescriptions for pain meds.  I would hope that your doctor(s) would do the same for you. 

It's been a long time since I went through treatment, but I'll try to give you a few tips that either helped me or that I've learned from others after I completed my treatment.

Mouth sores are a common side effect.  I had them and they were no fun.  However, many people completely avoid them by swishing several times a day with a mix of salt or baking soda in room temperature water.  If you begin this on day one of treatment, you may minimize them or not have them at all.  Avoiding foods that are hard, crunchy, cold or hot can help make them easier to deal with if you should get them.

Skin irritation of the treatment area is common.  My skin was burned--at least 1st. degree, perhaps 2nd. degree towards the end of treatment.  I was given Aquaphor in the beginning (which can be bought over the counter).  When it was no longer effective, my radiation oncologist prescribed Silver Sulfadiazine Cream, which was somewhat effective.  Some people get relief from Domeboro soaks or Radiaplex gel/cream.  I've also heard that Aloe can be soothing.  I'm sure there are other products out there that other people have used and, hopefully, they will chime in and let you know what worked for them.  Just keep in mind that anything you use on your skin must be completely removed prior to getting a radiaiton treatment, as some products can intensify the burning effect.  I would avoid using toilet paper, as it will be much too harsh on your skin.  Many people get a peri-bottle to clean off with after going to the bathroom.  You might also look into getting a bidet that attaches to your toilet.  I didn't know about any of this, so I ended up having a bucket of water by my toilet and dipping the toilet paper in water before wiping to make it less irritating.  Live and learn!

Nausea affected me in the beginning of both rounds of chemo, but it was effectively controlled with nausea meds given to me by my doctors.  I also carried hard candy and saltine crackers with me, just in case a bout of nausea hit me when I was not at home.

Fever can be a sign of infection.  I was advised to take my temperature on a frequent basis to make sure I was not getting sick from some type of infection.

Diarrhea is a very common side effect.  That was one of my primary side effects, for which I took Immodium.  It was somewhat effective.  However, I wish I asked my doctors for a prescription med, such as Lomotil, which many people find effective.  I used the BRAT diet off and on to help control my diarrhea (Bananas, Rice-white, Applesauce and Toast-white).

Decreased appetite is very common.  My appetite tanked and I got down to 92 pounds, at which time my medical oncologist threatened to admit me to the hospital for IV nutrition.  I really had to force myself to eat.  He told me to eat whatever I could get down, which ended up being foods that were not so healthy, but at least I was eating something, which kept me out of the hospital.  One thing I highly recommend is getting a good source of protein with every meal or snack.  This promotes healing of the damage that treatment can do.

Hair loss can be a side effect for many going through this treatment.  I lost about half of my hair in patches all over my head.  Ask your doctors or nurses about wearing a "cold cap" during chemo.  These are known to help patients avoid hair loss.  Also, wash your hair less frequently.  I was one of those people who washed their hair daily prior to treatment.  I quickly found out when hair loss began that that was not a good idea. 

Fatigue was a huge side effect for me.  Some days I would get up, eat breakfast, then go right back to bed.  I had no energy, which was not typical for me.  If you experience fatigue, rest whenever you feel like it.   Naps became part of my daily routine.  If you can get someone to help you with meals, errands, house cleaning, etc., I would highly recommend it.  I drove myself to treatment most days and, even though it was only a short distance from my house, I would come home completely exhausted.  I remember trying to clean my bathroom one time and having to lie down and rest a couple of times before I could complete the task.  I also found I could not go up my stairs without having to sit down for a rest sometimes.  The bottom line is if your body is telling you to rest, listen to it!

Other side effects can vary from person to person.  I developed a urinary tract infection during treatment, though to be brought on my the radiation.  If you experience ANYTHING that is out of the norm, bring it to the immediate attention of your medical team.  As I stated above, something that seems very minor can develop quickly into something serious when a person's immune system is compromised. 

I hope all of this will be helpful to you and I also hope that others will add to this list.  As I said, it's been quite a few years since I went through treatment, so things don't always come to mind.  The bottom line is you will get through this, just like the rest of us.  Listen to your body, keep your medical team informed about any side effects, and when you are having a bad day, just remember that this is only temporary.  You will get to the finish line before you know it!

Wisteria83

pacificnw said:

eihtak

Thank you. I can't tell all of you how reassuring it is to know I'm not alone out here. I do have a question that perhaps you could help me with. Are there things I can prepare or buy before treatment begins that might be helpful to have around? I've definitely decided not to work. I do have a 21 year old special needs son (Fragile X Syndrome) at home who I want to save my energy for. Any advice would be appreciated. Thank you again!

Supplies to have on hand

I found baby wipes with aloe to be necessary when even really soft Charmin tp was too abrasive.  This isn't a time to scrimp and buy the cheap ones.  Buy the thick, soft ones.  Peri squirt bottles for when you pee. (Amazon) If you squirt water on your perineum as you pee, you won't feel the burn so much.  Some people use sitz baths, and I bought one but never used it.  Instead, I took many, many baths everyday, and that soothed my bottom from the burns better than anything.  You'll want to have loose clothing.  I found long skirts perfect, that way you can just hike it up during rad treatments, and won't need to change into a gown.  I bought Chux pads for my bed.  This was to protect my sheets from the ointment I used.  Your doc will recommend ointment, sometimes with lidocaine in it.  I used Aquafor, and no one offered me the lidocaine, so I didn't know it was available.  You'd need to ask your doc about that.  ALL ointment needs to be off before your rad treatments.  It can get painful to remove it all later in treatment, so I bought 100% cotton polishing cloths...again at Amazon, they were amazing for washing and drying my bottom.  They feel like an old worn tee shirt, instead of a rough wash cloth.  I also  bought boxer shorts because someone here recommended them.  I wasn't able to use them because I needed to wear a pad due to fecal incontinence.  (that's one of the side effects that you MAY get, but most people don't.  Just putting it out here in case it happens to you, you won't be surprised). The Chux pads on the bed help with that too.  I went to bed bare bottomed, with just a night shirt so that my burns would get a break from something touching them all the time.

I was one of the few who unfortunately had wicked side effects.  I lost a lot of weight which I couldn't afford to lose.  I also ended up in the hospital for four days a month after treatment ended because my blood counts kept going down instead of of up, and I needed a transfusion.  I think I'm the exception to the rule.  When I was first diagnosed, the doc thought my tumor was maybe T1 or 2, but after further testing, it was determined that it was T4 N0 M0.  That means stage IIIA, because it also went into my vagina.  I'm 6 months post treatment now, and my PET scan last week was clear, my anoscopy was clear and I'm good to go...until February for another anoscopy.  I'm still dealing with fatigue and diarrhea, but I should also mention that I had a horrible case of sciatica two months after treatment ended, and I had back surgery at the end of August which I'm still recovering from.  I expect you to be in better shape than me by the time you finish your treatment.  You didn't say how old you are, or what kind of health you have going into this, and I think that makes a difference in how well you do during treatment.

Please keep us posted on your progress, and stay positive.  It's a difficult treatment to get through, and you'll find strengths you never thought you had.  I figure if I was able to get through it, and I'm a total wimp...anyone can!  Best of luck to you.

Wis

pacificnw

Thank you all!

OMG, you are all awesome. About me, I am a 58 year old retired kindergarten teacher. It's been three weeks and I'm still waiting for the radiation dept to call and set me up with a consult. Unfortunately, for the first time in my life I have unimpressive insurance on a group plan.

The onconogist said there is no "coach" for the team which really bothers me. Actually, I'm not really sure who is supposed to be on this "team". He has been the only person I have been able to talk to besides the doctor that performed my colonoscopy. I just want to get going, as awful as it sounds.

Thank you for your posts about things I can do to prepare. I'd rather be overprepared than under. A little online shopping is always a good way to keep distracted, even if it's for aloe baby wipes I am waking up every night at 3 even on sleeping meds. I just wish I could turn my brain off.

I have a 24 year old daughter, also a teacher, who suffers from anxiety. We are waiting to tell her until we know a timeline. She is my biggest worry and stress. She is teaching full-time, working on her Masters and heading to Europe at Christmas with her boyfriend of 8 years. My stress comes from having to tell her. Her anxiety is going to make this just as awful for her, and I'm afraid she will cancel her  trip. Anyway, I ramble...  I am so thankful that you have each taken time to help me feel connected.

mp327

pacificnw

Between my 3 doctors (colorectal surgeon, medical oncologist, radiation oncologist), I would say that my medical oncologist was the lead doctor, even though my journey began at the colorectal doctor's office when I went in for a consult prior to having my first colonoscopy.  The three of them took good care of me and the only disagreement was between my med onc and my rad onc as to how far out from treatment I would have my first follow-up scan.  Other than that, things went smoothly with my doctors.

I know it's hard not to worry about the insurance issues, but try to put that aside the best you can and focus on getting through treatment first.  It will all work itself out.

tanda

pacificnw

Pelvic radiation affects areas below your waist!  You might ask the nurses about dilators to stretch your vagina.  I didn't have a set until after treatment, but a number of women began using them before treatment began and during treatment(if possible); this is important and is something that doctors often fail to mention. 

Several months after treatment I went to a physical therapist who specialized in pelvic floor rehabilitaton; she helped stretch the vaginal area and showed me how to use the dilators.

 

My chemo was in pill form.  I had one treatment of mitomycin insfusion and then 5FU(xeloda) pills 5 days a week concurrent with radiation.  I had no appetite , ate very little, but only lost about 2-3 pounds.  I did not have mouth sores, nausea or vomiting. I did have  frequency and urgency and great fatique.  I did not lose my hair, but it thinned and a month or two after the end of treatment, it shedd a bit. I sat in a sitz bath or the bath tub which was very soothing .  The nurses gave me aquaphor with lidocaine and domboro soaks

I was working pt-time on weekends and was ok for the first 3 1/2 weeks and then I was just too tired and uncomfortable to do anything except go for my daily radiation.

My team was a medical oncologist, a radiation oncologist and a colorectal surgeon(who did the initial biopsy) and after treatment ended, follows up with dre and anoscopy.

I was assigned an excellent nurse practitioner and I communicated with her(via e-mail) about side effectsand all kinds of questions between appointments.

I made contact with one of the social workers who gave me information about local resources, The American Cancer Society, volunteers who could provide transportation,meals, etc if needed.

I think you will do very well...treatment is only about six weeks.  Perhaps your treatment center has some resources for families(counseling, social workers,etc) even your dr ,who could reassure your daughter that you will be well cared for ; by Christmas you may even be finished active treatment.  My sister was very upset and worried and she was able to have sessions(free) with one of the social workers who does counseling for patients and families; it made a huge difference and allayed a great deal of her worry and anxiety.

I received lots of information and wonderful support from this site and also from Blog for a Cure.

Wisteria83

Forgot to mention

I forgot to mention that you'll lose your pubic hair.  At first you'll notice red bumps, and that's the follicles being irritated.  Then before you realize it you are as bald as a baby girl again.  This didn't bother me a bit.  In fact, it made removing the ointment that much easier.  I'm 6 months post treatment, and it's just starting to grow back.  I don't know if it will come back completely, and I don't really care about that.  I didn't lose the hair on my head, but it definitely got thinner.

My Radiology oncologist was the team captain...that's what I called him.  Since it's the radiation that's most important and the chemo from the medical oncologist is to make the radiation work better.  The surgeon who did the biopsy is also the one who does the anoscopies later on for follow up.  As far as I'm concerned, I don't care if I ever see the doc that did the colonoscopy ever again, considering he missed the tumor on two occasions that I was under anesthesia and he could have seen it if he didn't speed past it.  I asked my med onc, how does somebody miss a 5cm. tumor?  Her answer:  You don't miss it.  So he was incompetent in my book, and hers as well.

My daughter is also a teacher and working on her masters.  She'll be finished next spring.  I told all my kids (4 of them) and only one lives in the same state as I do.  I told the three others to keep on with their lives as usual...that I would let them know if I needed them.  I told them this, knowing that it would be a slim chance that I would ask them to come south to be with me.  My daughter flew down on her spring break even though I told her there was nothing she could do to help, but she told me that she needed "mom time" and she was coming no matter what I said.  My two youngest boys stayed in CT and we kept in touch by phone and Facetime.

 I understand your anxiety about telling your daughter.  She needs to know though, so as soon as you know what's what with your treatment, you should let her know.  Make sure she understands that you really want her to continue with her plans to go to europe.  There's nothing she can really do for you if she stays home.  I think I may be putting the cart before the horse here though.  Are you still married?  You didn't say.  If so, it will be your husband who will be your primary caretaker.  You WILL need help.  I can't imagine going through treatment without my husband.  He shopped and cooked because I was completely wiped out with fatigue and pain.  If you have friends and family close by that offer to help out, by all means say YES! This is not the time to be shy or timid about accepting or asking for help.  We hired a girl to come to clean house every other week because I just couldn't do it, and my husband was busy doing everything else, including driving me to my dr. appointments and treatments.

Ask your medical oncologist about taking the Xeloda pills instead of the 5FU pump.  From everything I've read here from the folks who have had the pump, I feel lucky that my doc prescribed the pills instead.  They work just as well according to studies.  I still had the two courses of Myomiticin.

Also, the nccn.org site is the BEST.  You'll need to register to use the site, but all the info is there regarding your treatment protocol.

I realize that this is all pretty overwhelming.  SO much to think about and your brain working overtime.  I also had insomnia due to anxiety.  3 am was my witching hour too.  Try to find something to take the edge off.  A hobby...something brainless like adult coloring books are great, or something that you really have to concentrate on, so you DON'T think about cancer 24/7.  For me, I did beadwork...off loom beadweaving.  Youtube has some great guided meditations...some really short and some really long.  Both are great depending on your mood at the time.  Music is a great escape too.  Someone here mentioned watching comedy shows or movies.  There are many things that can help.  You might consider journaling...it's a good way to vent when things get tough, and it's good to get your feelings out somehow.  Even if you do have someone to confide in, you may want some things kept private.

PAIN:  Your doc can prescribe pain meds for when the over-the-counter stuff doesn't work.  Don't be shy about taking them and don't let the pain get so bad before you ask for them.  It is a good idea to already have a prescription for them before you actually need them.

While you are still feeling good...go out and enjoy yourself.  That's something I wish I had done.  As it is now, I still don't feel comfortable going out for dinner because of my ongoing bowel issues.  I live in the middle of nowhere, so it's a good 40 minute ride to stores and restaurants.  It was the same ride for my daily rad treatments.  It got to the point at the end when I either lay down in the back seat or reclined the front passenger seat to avoid pressure on my burned bottom.

Keep coming back as more questions arise.  I think it's safe to say that at least one of us here will be able to answer any questions that might come to you.  This is also a great place to vent...I've done more than my share of complaining here...things that I just didn't want to burden my husband with.  It's a wonderful community of people who know exactly what you are going through, even if some of us haven't experienced every single thing.

Stay strong,

~Wis

 

Kaybird

pacificmw

 I agree with what has been shared so far, I was diagnosed 9 yrs. ago, tumor "in situ" but still had to undergo same treatment.  The best advice I received was usually from the Oncology nurses. They were great at answering any question I had and had common sense solutions to treatments.*  I would say the best advice I received once my white cell count dropped was SLEEP! I was a doer and had a hard time letting myself sleep a lot. But that really helped! Dr.'s were very good at making me comfortable,  During treatment it is not necessary to suffer, if you have pain or can't sleep or have mouth sores and Dr. hasn't offered anything, speak up and ask.  There are so many things to help make it through treatment!  Keep a positive attitude and know you too will get through it.  My motto then was, "to get to IT; you have to go through It"  meaning we have to go down a little rough road of treatment for a great result at the end, worth it!  It is a bit of a humiliating cancer to go through ..... keep your sense of humor!

*with one exception, no one talked to me about vaginal dilators and I have no sex life today because of it.  I should have made myself become more informed as I was going through it and didn't. So proud of you for getting ahead of the game. I was too scared to know too much at first, to my own detriment

 

Mollymaude

Pacificnw

I agree your oncology doctor will be your main Doctor during this. If radiology hasn't called yet, you call them, don't let yourself fall thru the cracks. I found it helpful to buy a 2-3 month supply of walmart type stuff like paper products, laundry detergent, dish soap, toiletries, etc so I didn't have to do big shopping when I didn't feel good. Your treatment timing will be close to the same time of year that mine was- so I took my kids out Christmas shopping for their presents in November before I even started treatment. I'm glad you won't have to work during treatment. 

pacificnw

2nd radiologist appt.

I am so appreciative of all the advice and suggestions sent my way. Both onconogist and radiologist have made it sound like a walk in the park, which is kind of frustrating.  I'm hoping for information today. I am going to my second appt. with the radiologist. It sounds like a team affair, and I'm dying of embarassment just thinking about it. I think I'll be starting treatment next week. The chemo will be 5fu and Mitamyacin for 4 day upfront and at the end of radiation. Tomorrow I get the iv. So many fun things to look forward to.

Sparrow1946

Still have discomfort 5 months after treatments

My last radation and chemo was the first of June this year. I had squamous cell cancer caused by a medication I take for a kidney transplant. I'm cancer free. Thank the good lord, but I still have some pain when I have a BM. im having a BM about 4 or 5 times a day. It's normal. I've been thru the diarrhea and the constipation. Miralax and anything that could help. But the pain is really concerning me. Has anyone had this problem. thank you so much for reading. 

 

Mollymaude

Pacific NW and sparrow

Pacific NW- I'm so glad you have found this site because you will be more prepared when treatment gets tough. I don't know why your doctors are acting like this is like a walk in the park- it definately is not! It was brutal on me. Others have not gotten as sick but it is rough. I don't want you feeling wimpy if and when it gets that for you. That said, you can do it! All of us have here on this site.

 

Sparrow- pain is normal for me too. That tissue has been damaged and it heals slowly. Also I found out my rectals muscles were going into spasms so the pain was even worse. Taking a muscle relaxer at night helped a lot.

Mollymaude

Pacificnw

I forgot to say you will soon lose your modesty. I think that happened early on for me when I got three rectal exams in one day!

Sparrow1946

Mollymaude said:

Pacific NW and sparrow

Pacific NW- I'm so glad you have found this site because you will be more prepared when treatment gets tough. I don't know why your doctors are acting like this is like a walk in the park- it definately is not! It was brutal on me. Others have not gotten as sick but it is rough. I don't want you feeling wimpy if and when it gets that for you. That said, you can do it! All of us have here on this site.

 

Sparrow- pain is normal for me too. That tissue has been damaged and it heals slowly. Also I found out my rectals muscles were going into spasms so the pain was even worse. Taking a muscle relaxer at night helped a lot.

Thank you for responding to

Thank you for responding to me. It's been the hardest thing I've ever been through. I thought it was hard on dialysis. I think because I've been immunosupressed for a long time plus my age, I'm 71, has a lot to do with my slow healing. I'm thrilled and blessed to have found this site. Bless you all and prayers too. 

Mollymaude

Sparrow

Im 51 and the healing was slow so I imagine another 20 years and add immunosuppressed and it would be even slower. It does get better with time. I've had a few biopsies since treatment and I would say it took about six weeks to get back to "normal". I still get occasional blood in stool for no apparent reason too- I think that irradiated tissue just stays fragile.

Sparrow1946

Mollymaude said:

Sparrow

Im 51 and the healing was slow so I imagine another 20 years and add immunosuppressed and it would be even slower. It does get better with time. I've had a few biopsies since treatment and I would say it took about six weeks to get back to "normal". I still get occasional blood in stool for no apparent reason too- I think that irradiated tissue just stays fragile.

My age and the transplant

My age and the transplant have to contribute to how I've felt. Maybe I'm rushing my recovery. I have absolutely no energy. I live alone, but my 2 sons live close by and I'm so thankful for them. 

Do you take vitamins? I'm taking Centrum and B12. I'm thinking about adding fish oil to that.

Its a comfort to have this site to come to ask questions and give help.