Just Beginning

Hi Faith!  Sorry you needed to come here but glad we are here for you.  This is a tough journey, I will not lie to you!  I am the kind of person who plans for the worst and hopes for the best!  I was diagnosed with Anal cancer in july 2011.  I am packing now to head for Houston for my 2 year check up.  I have fingers crossed for NED.

ok, as for sunburn feeling after radiation, that may have been true for some, but at end of treatment I had oozing 3rd degree burns front and back.  I did end up in the hospital for 5 days after the end of treatment so you might want to set up child care for your Grandkids just in case.  

IMO if you need pain meds, take them!  I tried not to and think I made things worse!  BM's will HURT!  Keep a spray water bottle by the toilet to spray yourself as you urinate.  A bidet is nice....  A handheld shower in tub is wonderful!

things important to me:  long dresses so you can go commando, a place to relax and let a fan blow on your heinie (a must in my opinion!)  whatever cream the doctor orders:  someone to drive you to appts farther down the line, (will you be close to home?)soft flushable wipes and LOTS of fluids to drink.  Plenty of rest when you need it, but exercise (walk) when you are able. lastly, you will get a LOT of good info from this site, remember that this is what worked for us and pick and choose,  we NEVER override your Doctor!

so, hugs and blessings as you start YOUR journey and keep us posted!  Lorikat

Although I'm sorry a diagnosis of anal cancer has brought you here.  I hope you'll find lots of good information here and tips to help you get through this with the least amount of pain, discomfort and inconvenience.  I am a 5-year survivor and some of the stuff I went through has begun to fade, but there are a few main points I would like to reinforce.

1)  Hydration is very, very important!  A few people have ended up being hospitalized just because they become dehydrated, so drink lots of water.  Remember, you may have diarrhea, which worsens dehydration even more.  A good tip is to drink an 8 oz. glass of water following a trip to the bathroom to replenish fluids lost.

2)  Do not be afraid to take the pain meds!  I didn't take enough and suffered greatly.  I was trying to not be in a stupor from them so that I could drive myself to treatment every day.  If at all possible, get someone to drive you to treatment once you begin taking the pain meds.  Do not try to be a hero--you get no extra points for that!

3)  There will be side effects, so be sure to bring up each and every one to your doctors so you can get something for relief.  Also, remember that anything that might arise that seems minor can quickly turn major, so tell your docs and nurses everything! 

4)  If the pain meds you are given become ineffective at some point, ask for something different/stronger!  This also goes for anti-nausea meds and anti-diarrhea meds.

5)  You've already gotten good advice on clothing options that will limit friction against your skin.  That's all good advice.

6)  Some people, including myself, experience partial hair loss.  To be as kind as you can to your hair, I recommend using a shampoo with biotin in it (Jason is the brand I used and is available at GNC stores), do NOT blow dry, and shampoo as infrequently as possible.

7)  Your appetite may tank and that is not the time to worry about dieting or even eating the most nutritious foods.  Just eat what you can get down.  If at all possible, include a source of protein in every meal or snack, as it will help with healing.  Protein drinks can be used to supplement.  I lost my taste for anything sweet during treatment (which for someone like me who has a huge sweet tooth, that was hard to believe!).  I craved salty things and lived off of Ramen noodles.  It worried me that I wasn't getting nutritious foods, but I just could not stomach much anything else.  This is only temporary, so just eat what sounds good to you.

I'm sure there are many other things I haven't mentioned, but the above is a start.  Just tell us what you are experiencing and you will be given many suggestions, I assure you!  It's always a trial and error thing--what worked for one of us may not work for someone else, but you don't know until you try. 

Remember that this is a short course of treatment, even though it may seem never-ending towards the last couple of weeks.  But we are here to help you get through it, just as the rest of us have.  It's doable and you will be on the other side of it real soon.  Take each day at a time and come here whenever you need virtual hugs, advice or just want to vent.  That's why we're here!  I wish you all the best and hope you'll keep us updated as you can.

I see you've gotten good tips already 

I didn't have loose dresses but I did wear baggy sweats and men's boxers so that's another option for you.

I couldn't keep myself hydrated after the second week so I spent a lot of time at the infusion center getting hydration.  I hope you don't need that but just keep it in mind.

I didn't need hospitalization but I guess I was close.  The week after my treatment ended I needed a transfusion, antibiotics and 3 shots of neupogen.  I was in bad shape but I think I actually began to recover pretty quickly after hitting that rock-bottom place.

As Lorikat said, prepare for the worst and hope for the best.  Line up childcare, meals, housecleaning help, anything that others can do for you so you can focus on yourself as much as possible.  

If you need the pain meds, take them.  I couldn't have made it through without them.  Eat anything that appeals to you.  I lived on a protein shake I made with greek yogurt, frozen fruit and whey protein.  I ate toast and pasta and jello and not much else.

Keep asking questions both to your doctors and to us.  I wish you well.

God Bless you as you go through this, it is doable and I actually worked (cut my hrs down to 1/2 time BUT this kept me going and gave me a reason to get up every day)--and cared for my family the entire time of treatment EXCEPT for the week after the last Chemo tretment that was the WORSE  completed last round of Chemo on Dec 22 by Christmas night I was down for the count for a whole week--

Make sure to get some Benadryl or a antahistamine the itching was awful especially at night while trying to sleep, I used this EVERY night!

Get some Pain meds--I was afraid to get addicted but only used them at night and occassiniallyto get some rest, and I had no problems with addiction once treatment was over

A solo cup-- to urinte in when the burns hurt so bad you are afraid to pee  this kept the urine off the tender spot and I could hold the cup up close and direct urine into it

lots of washclothes that I cut into 1/3rds to make sure they could lie well on my ares--to soak in domboro (that is a soluton) 

Hand Held Shower to clean ALSO got scented FREE wipes to carry with me to work--soaked them in cold water and kept them in a tupperware DO NOT USE lavatory TP--

1st week of chemo gave me Mouth sores (felt like chewing on razor blades) they prescribed a mothwash with numbing in it ? Magic mouth wash I am not sure of active igredients, I can get that for you if you want

Sitz Bath to soak in AND  --and not to sound gross but --I actually had to poop in this a few times, to ease the pain and made that so much easier

Ask for Silvadene to appy to the area while you are going through this, had a few other ointments suggeted but this one worked the best

A bunch of old towels and nice flat sheets to lie on and drape over yourself  with NO panties and applying the soaking washcloths

AFTER treatment no one told me what to do--I used A & D ointment to keep the area from shirveling up ALSO stock up on panty liners for AFTER  I use them to this day when I apply the A&D Yup still using it a year out!

I was so aftraid and scared--I started treatment Nov 19 1 yr ago--

YOU can do it AND you found the best place for help and reassurance

XO ~~~~

faith4me777 said:

Thank you so much!!  Taking

Thank you so much!!  Taking benadry is new to hear is that because of the radiation burn itching?  I feel pretty much the same way as most I don't like pain pills but seem the general attitude is TAKE them   Is the silvadene that everyone keeps mentioning a prescription or over the counter?  The only thing Drs have said is to use Elta lotion and Aquaphor neither of which to me seem to soothing.  I too am afraid and scared but this too shall pass.  Praying your after treatment jouney turns to a distant memory and side effects disappear.  Thanks again and have a blessed day.

I was prescribed Silvadene once I'd had all of the radiation treatments.  During treatment I used A+D, cortisone cream, neosporin and aquaphor compounded with lidocaine.  I used the aquaphor the most both during and after treatment.  The lidocaine helped with numbing any area I applied it.  I also had a prescription for lidocaine gel and found it essential for numbing my urethra so that I could urinate with less pain (I had radiation to cancer cells on my vulva as well as the anal tumor and that meant that my urethra and urinary tract were also burned - I can't believe now as I write this that I can look back - a year ago I was in such agony but now for the most part I am healed and moving forward)

There are people here who managed to get through this still working, still driving themselves to treatment, not needing the pain meds.  I sincerely hope you get to be in that group!

kihonkumite said:

Surgery coming soon

I was told that I have to have the surgery and get the colostomy bag. Of course, I'm devastated but trying to accept, because what else can I do? I've avoided reading about the bag until today. I can't say that I'm any less relieved by reading about it.

Just venting...

I am so sorry, I wish you well and will keep you in my thoughts.

kihonkumite said:

Surgery coming soon

I was told that I have to have the surgery and get the colostomy bag. Of course, I'm devastated but trying to accept, because what else can I do? I've avoided reading about the bag until today. I can't say that I'm any less relieved by reading about it.

Just venting...

I am very sorry to hear this and I understand your feeling of devastation.  However, you will adjust and find ways to cope with the challenges of living with an ostomy.  Our friend, Laz, can probably be a really good resource for you and eihtak too.  Also, you might find lots of information on the colon cancer board.  There are ostomy support groups across the country.  Hopefully, there is one in your area.  Please keep us posted as things get scheduled for you and come here to vent away any time.