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faith4me777
Posts: 17
Joined: Nov 2013

Hello everyone and thank you for any help you can give.  I know I probably can, and have, found tips out there but I really wanted to ask people who have been through this.  I am a single grandmother raising my two grandchildren ages 7 and 8.  I have been diagnosed with anal cancer.  I begin treatment one week from tommorrow.  Thought I would look for anything I can do or buy to be ready for this.  I want to be as prepared as possible so it makes looking out for the kids as well as I can.  I guess cancer and single with kids is kinda tough just want to have all the tools I can ready to go.  The doctor says mild sunburn but what I am reading sounds way more serious then a mild sunburn.  Thank you have a blessed day!

 

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

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

 

faith4me777
Posts: 17
Joined: Nov 2013

Lorikat,  Thank you so much for all the info.  I do have the hand held shower nozzle yeah i wondered if it would help or hurt because of the force.  I would have never thought of the spray water bottle but sounds like a wonderful idea.  They did tell me it could burn, good way to dilute the urine and keep the burning at bay thanks.  I had thought about lose pants but I think your idea of long dresses suits me better, wow I will be in style with anal cancer :)  I am about 30 miles from where I will go for treatment hoping I will be able to sit that long.   I am the grandchildrens one and only I don't have family or many friends in the area where I live but I do have a lot of their wonderful teachers who have offered to help and what a huge blessing that is.  Thank you again for all your information and great ideas.  Blessings to you on your travel to Houston and clear test results.  I too live in Texas.  Praying you are at the end of this journey with only bright days ahead.

 

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry about your diagnosis. You will get some good tips as you go through this. I think you are going to need help with your grandchildren, for their sake and yours. I really hope that you can find someone to give you a hand. I think maybe you could start by cooking meals for them now to freeze for when you can't cook. I did quite well with treatment, but it was tough, for sure. Very tough. I will keep you and your little ones in my prayers.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Where will you be going for treatment?  

 

faith4me777
Posts: 17
Joined: Nov 2013

Lorikat...I will go to Texas Oncology in Denton it is about 30 miles from where I live so hoping I can make it home each time.  Thanks again for all your information it certainly helps me prepare!

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Heading to your part of the world tomorrow.  My daughter lives in the Dallas area and  I will visit with her  on my way to Houston...

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

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.

faith4me777
Posts: 17
Joined: Nov 2013

So Happy for you and nice to hear someone say five year survivor that is music to the ears for sure.  Sorry you had to go through it but happy you are doing so well as it gives someone like me a great deal of hope.  The information and honesty here is amazing and helps to know what I will really be going through or could go through.  Getting nervous but as you said it is doable.  Thanks again for all the indepth advice and knowledge I so appreciate it.

jcruz
Posts: 223
Joined: Jan 2013

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.

 

 

faith4me777
Posts: 17
Joined: Nov 2013

Thank you Jcruz.  Oh my sounds like you really went through it.  I can tell the hydration thing is really important it has been repeated many times here.  I have added protein shake to my list of things to get.  My little list is beginning to look like a childs Christmas list so will be shopping this next weekend gathering everything I can to make this as easy as possible.  Preparing helps keep my mind occupied too.  Haven't started treatment yet and I already can't wait for the day I wake up and don't think Cancer!  Thank you again and have a blessed day!

Marynb
Posts: 1134
Joined: Aug 2012

I was diagnosed the night before Thanksgiving. I had 2 weeks before treatment started, so I got the things I needed and also did all my
Christmas shopping and decorating before I started treatment. I don't know if you celebrate Christmas, but if you do, that could keep your mind off things.

faith4me777
Posts: 17
Joined: Nov 2013

So sorry you had to start your Thanksgiving with that kind of news.  I guess there really is no good time but the night before Thanksgiving well nothing good to say about that.  I have been doing just that getting supplies, cleaning running errands almost feel as though I am "nesting" :).  The info on here has just been so awesome feel like I will actually be ready for this and prepared thanks to all who have gone before me.  Funny you mentioned that about Christmas -yes, I love and celebrate the birth of Christ-I have thought I would get some of the shopping done as well plus I do need some clothing for this.  Monday will be here before I know it but the sooner it does the sooner it is finished.

OMG 1012
Posts: 61
Joined: Dec 2012

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
Posts: 17
Joined: Nov 2013

WoW!!  Thanks everyone for all the helpful tips, really trying to do just that... prepare for the worst and pray for the best.  I am so glad that I found this site.  Really helps seeing what others who have actually been through it have tried and or are doing.  So much of this I would not have even thought of.  I have chemo class on Tuesday so I guess I will learn a lot there.  Feeling I am on a countdown and I guess in some ways I am.  I am having the port put in Monday morning (next week) and straight from the hospital to begin chemo and radiation.  For some reason this port thing is bothering more then some of the rest.  I don't like needles of any kind and barely tolerated the tatoo needles for the markers.  Gosh I am a wimp lol.  LORIKAT I am going to Texas Oncology in Denton, TX.  It is about a 60 mile roundtrip so should be interesting.  Thanks again everyone and I am sure I will have 1000s of other questions :)

faith4me777
Posts: 17
Joined: Nov 2013

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.

jcruz
Posts: 223
Joined: Jan 2013

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!

OMG 1012
Posts: 61
Joined: Dec 2012

Silvadene is prescription, my pharmacist gave me the BIG jar, I too used the aquaphor in the beginning but found the Silvadene at the middle/end of treatment provided much more relief.  AND the Domboro was wonderful, I mixed 1 packet in a bottle of water and kept it in the fridge, I would pour some out into a bowl and put the washcloth piece in and apply the cold solution to my area.  The itching I am not so sure what caused it I am assuming the radiation, it was so intense that I dont know what I would have done with out the Benadryl.  You menitoned getting your port in --ya know, that is the one things that really bothered me the most about the whole treatment too, but it is worth it for ease of treatment.  (Mine has now been removed)  You are almost 1 year exactly from when I started my treatment, (Nov 19) I wish you well and want you to know it does get better, I am doing very well after completion of treatment 10 months ago.  I also wanted to add that my mouth started to hurt about 3 days after the 1st round of chemo. And the worse days of the whole treatment was 3 days after last round of chemo and that lasted about a week--we all are different, some things work for some and not others, I too found this board before I started and I don't know how I would have made it without all the wonderful people here and their support and recommendations--I wish you well!

faith4me777
Posts: 17
Joined: Nov 2013

Thank you so much makes me feel better about the port, I just really don't like needles but then most people don't.  At my age you wouldn't think they would still make me break a sweat but they do.  Wow amazing the similarities.  I am so thankful I found this site can't say thank you enough to everyone for the info and kindness and support they have shown.  It is helping me feel like I am gathering the right tools for this war and that everything will be ok.  The mouth sores don't sound very exciting either but then none of it is.  Glad you are doing well that is inspiration enough for me as I enter this journey.  Thanks for the well wishes!!

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

I was prescribed the Silver Sulfadiazine and found it helped, but it was very hard to keep on, as I had serious diarrhea and was wiping it off with each trip to the bathroom.  It is a prescription.  One thing that is very important is that it must be completely removed from your skin prior to treatment, as it contains metal and can cause increased radiation burning.  At some point, it may be too painful to remove it completely, so definitely ask your doctors if there is something else you can use that does not need to be removed prior to treatment.  Some people have said they used aloe and were told it was okay to have on their skin during treatment, but please ask your doctor as I cannot confirm this.  Also, before using Benadryl for itching, run that by your doctor first too.  He/she needs to know everything you are using either by mouth or externally.  I used Aquaphor up until the time I needed the Silver Sulfadiazine, but can't say one way or the other if it really helped.  I wish you all the best and I know you will get through this!   

OMG 1012
Posts: 61
Joined: Dec 2012

I  got diarrhea in the very beginning of treatment and did not use anything--drank lots of Gatorade - I actually had to use stool softeners NOT LAXATIVES  near the end --1 in the am and 1 at bed time--I still do this to this day--to make sure all comes out easy- Just like Margaret said--make sure to ask your Dr -- wishing you well and as far as I can tell by your start date,  your worse time will be Christmas week, Just like for me.  Remember we are all here for you XO

faith4me777
Posts: 17
Joined: Nov 2013

You are just so amazing with all you info thank you so much.  The Dr said Aquaphor and Elta lotion but having a few backups of other products just in case will be good to.  I will always confirm with the Dr to make sure things are ok to use.  Don't want to mess anything up for sure.  I haven't heard to much about showers or baths does it hurt to take them or soothing.  Just figure that wiping the area may not get everything off and don't want to get burned more then I have too.  So much to remember for my little sometimer brain.  I have chemo class tomorrow so i guess they will give me a lot of information there too.  Thanks again so much for you kindness and support.

Marynb
Posts: 1134
Joined: Aug 2012

Faith, everyone is different and you need to do what works for you. Pain pills make me sick. I get nauseous and dizzy and I cannot function on them. I have a high threshold for pain. Because I was a divorced Mom, I had to function. I did not take pain any pain pills at all, and I did fine without them. It was painful the last few treatments and the week following treatment, but not too bad at all. I didn't want to add to my problems by taking pain pills. I used prayer when things got bad.

Do what works for you. Don't expect the worst, expect that you will do fine and be rid of this awful cancer. It was very doable!

faith4me777
Posts: 17
Joined: Nov 2013

I understand I am a single grandmother raising two kids and I have to function.  I don't really have family here and haven't lived where I do long enough for many relationships but it will be ok, I can do this and the kids will help.  Don't really want pain med but if necessary will take them just have to be careful.  we just finished football and soccer so that is over and nothing should start until my treatment is over God's perfect timing. Kicking cancers butt that is my mission.  Thanks Mary

kihonkumite
Posts: 14
Joined: Oct 2013

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...

faith4me777
Posts: 17
Joined: Nov 2013

So sorry you are having to go through this.  I don't know anything I am new at this.  Just wanted you to know I will keep you in my thoughts and prayers and help anyway with the venting!

OMG 1012
Posts: 61
Joined: Dec 2012

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

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

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. 

faith4me777
Posts: 17
Joined: Nov 2013

it.So sorry you are having to go that route but if is going to make you well then I am all for it.  It could be any of us in this position but life is life and love is love so we go forward .   Onward Christian Soldiers help kihonkumite get through this surgery!!  I will you well and please vent any time. 

mxperry220
Posts: 360
Joined: Mar 2011

I was treated for anal cancer at Baylor Plano in 2008-2009.  I used Aquaphor(over the counter).  I found this worked better than any of the other ointments (rescription or over the counter).  I drank Ensure for vitamin/mineral supplement.  I found toasted cheese sanwiches on white bread and dill pickles agreed with me.  I also ate chicken noodle soup, ice cream and Jello.  I also took a one a day vitamin as I have done for years.

You may want to have a waterproof pad to put under you at night.  I found this worked best as I did not have to change my bed if their was any leakage or accidents before I could get to the commode.  It was much easier to just wash to pad.

 I used Dove soap on my privates as it is a mild bath soap.  I found Advil worked best for me for pain.  The nacotic pain killers did nothing for me.  I did and still take Immodium.  Sam's has  their brand and it is cheaper and works just as well. 

Make certain to not have any ointment on when you have radiation treatments. 

Hope some of this helps.

Mike

Marynb
Posts: 1134
Joined: Aug 2012

Dill pickles......lol. That made me smile. Isn't it funny how we all have our own foods that give us comfort? Growning up, my Mom always gave us ginger ale and cinnamon toast when we were sick. My Mom died long ago, but I drank a lot of ginger ale and ate cinnamon toast during treatment. It reminded me of her and gave me comfort.

faith4me777
Posts: 17
Joined: Nov 2013

Another good idea I had not thought about...........waterproof pad will check into where to get those but that would be great.  yeah narcotics usually just make me sick and I don't need that happening,  blessings!

mxperry220
Posts: 360
Joined: Mar 2011

As crazy as this sounds Petsmart sells large waterproof pads. I bought two for my dog and wished I had known of them when I was under treatment.  The large are a good size.  Below is a link to the pads.  They are washable and the fabic is soft.  The website says they cannot be ordered online but may be purchased in the store.

http://www.petsmart.com/product/index.jsp?productId=13026309&f=PAD%2FpsNotAvailInUS%2FNo

Mike

horsepad's picture
horsepad
Posts: 82
Joined: Apr 2012

I am a single grandmother raising 2 grandchildren, ages 8 and 10.  My grandchildren were a blessing during treatment.  Gave me strength and helped by getting this or that for me.  I didn't have it bad during most of treatment but the 2 or 3 weeks after treatment finished were the worst. I needed help with kids at end of treatment because I couldn't sit so therefore couldn't drive to take kids to school etc.  Best of luck to you, sending prayers your way.

faith4me777
Posts: 17
Joined: Nov 2013

Many blessings to you.  Thank you for your words, I have been really worried since I don't have family here and having not lived here long not too many friends.  I guess the good thing is that the end of my treatment I think will be around Christmas and they are out of school.  They are very self sufficient and I figure the worst will be preparing meals but sandwiches will get them through the day :).  They are a blessing everyday and keep me going for sure nothing like doing it the second time around.  Thank you and blessings!

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

faith,,,  i could not have driven myself back and forth at all in the last week especially... see if am. cancer society has someone who could drive you there if you need it..... good luck...sephie

horsepad's picture
horsepad
Posts: 82
Joined: Apr 2012

The American Cancer Society does have volunteer drivers that will take you to your doctor/treatment appts. all free of charge.  We use our own vehicles and gas.    I am a volunteer and have driven many survivors to their appts.  I have also ran some to the store etc  afterwards so they can get things they need.

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