Looking back with what you know now...

Pattie13 said:

Prepare
Hi Cheyenne,
I just began my treatment on Mar. 23rd. so you are just right behind me. There have been sooooo many people on this site that have given me so much helpful information that I felt I was very prepared. One thing I did not see (but I had in my closet anyway) is either wear or bring a pair of sweat pants with you. When you go through radiation it is easier just to pull the pants down to your thighs than struggle with the hospital gown and your chins being exposed and maybe getting cold. I hate those hospital gowns anyway. So I just bring a pair of sweats with me and change into them before the treatment and then change back out when I am done. Good luck to you.
Hugs and Prayers
Pattie

Cheyene..
I would have had the hand held shower head installed sooner.....sure cools the bottom! As suggested on this site bought long skirts and went commando. I am 6 months out from treatment and in remission. You can do it! Lorie

Looking back...
I posted this on another board. (I've edited it down, hopefully it still makes sense.)


Looking back, if I had had the time to make some plans for the coming months of treatment I believe I would have done the following:

Shopping list:

favorite drinks (a bottle for water or bottled water to keep close at hand)
Favorite foods (snacks, especially fruits, seems we crave fruits once the treatments start) A friend made me a large container of fruit jello and later in my treatments I made another. (none of it went to waste.)

Different flavored water additives. (One of the things that drove my husband nuts was that he'd go out and buy a bunch of a stated drink and then I wouldn't want it anymore and would want something else.) But I'm a craving based person so I don't know if that influenced me or if it is normal. (Taste buds seem to change as you go through treatments and what you like today and want today isn't always what you like or want tomorrow.)



Anti diarrheal medication
stool softeners (these two really depend on what happens daily)

Ensure or another of those products for getting all your nutrients in a liquid form. (I used carnation instant breakfast.)
Foods that are easy for you to microwave or you to cook.
Puddings and jello (I went through a ton of these) and small jars of fruit cocktail

Added: Heating pad (explained below)
Sitz bath
Pads (feminine hygiene) I haven't gone a day since diagnosis without them. (But again, I had a colostomy and I'm thinking I was a much later stage in my cancer then I am currently aware of. My tumor according to the radiation doctor was big.) I really need to get my hands on my files. lol

A small bag: Big enough to fit a couple of bottles of water, (for me pads), a notebook (for questions that might come to you at odd moments), napkins, wet wipes, one of those little bottles of hand sanitizer, a pen, the cream they'll give you for radiated skin care, (I'm trying to remember what the heck I wore on my feet to go from the waiting room to the treatment room and I can't remember if it was just socks or if I had slippers.) A hair brush is also nice to carry in the bag. Light snacks that you like. (Single serve things you can eat in a pinch if you get hungry or want something.) I carried crackers and jello. (Yeah, I know, odd things.) lol


Friends who will cook for you.
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My mom drove me to my appointments and a friend picked me up from them. (I also had a short list of people who would fill in when I needed, which I did wind up needing a few times.) And also people who had told me if I needed them for rides for my kids they could do that. (My daughter was in the high school play and needed rides almost daily - and she is my youngest.)

There is no way I could have driven myself as my radiation doctor had suggested I could. (Between the pain and the pain meds, I wasn't fit to drive. I was barely fit to be left alone. To be honest, I'm not sure I was fit to be left alone, though I was and I made do and was alright.) Mostly I just slept.

Entertainment: Ipad, Ipod, computer, Nook. (Though I found concentration harder and harder as the treatments progressed.) Though a friends husband engaged me in 'words with friends' which kept me busy and helped a lot for my piece of mind.

I would have also made sure my friends knew to visit as often and whenever they wanted. (I felt the best when entertaining and when left to my own devices pretty much just moped and slept.)


Oh, and take a friend on all appointments with doctors, it really does help to have someone with you who knows what your concerns are and can ask the doctor questions for you. (You'll find that you'll get distracted or forget questions, even if you write them down ahead of time.) Plus the moral support really helps.

Don't be afraid to ask your friends for help, they will feel great about being able to be there for you during this time.

Ask for the dilator early on (and ask when to start using it (I've heard different things on the board from starting during treatment to not starting until treatment is done.)
Ask if you can get the cream for radiation damaged skin early on. (And use it after each treatment.) It must be better to start this early rather than waiting until you are trying to correct the damage after the fact. (Don't use it before treatment though.)


But I'm also not sure what I went through was 'normal'. My doctor seemed to think I could drive myself. (I couldn't even sit on my arse at the time. I sat sideways on my hip in cars for the ride to and from appointments and had been sitting that way for awhile prior to getting diagnosed.) I was misdiagnosed three months prior to getting the right diagnosis, and had indications of trouble five months prior to that. (I should have went sooner and didn't.) The cancer was also complicated by pockets of infection that had to drain as I went through treatments and even after treatments had ended.

I'm not sure if this or any of this was complicated by the fact that I had a colostomy, but I couldn't have made it through it all without a really good heating pad. (I bought one down the road that feels like a fluffy blanket and wrapped that half way around my waist at night. It has an automatic shut off so I didn't have to worry about falling asleep with it on.)

General advice: I had/have muscle damage in my hips, upper thighs, and upper arms (burning, muscle cramps that come on easy, muscle atrophy.) I believe all of those are chemo related, and that I am a belly sleeper who was forced to her sides for sleep and who flipped herself like a pancake throughout the treatment. (From right side to left side) I'm thinking that it was a lack of activity level that had the chemo 'sitting' in the low spots (I slept on the couch throughout my treatment and recovery.) I was out of it (as stated before), I think if I had been more active the damage wouldn't have been so bad. (I'm in an exercise program now and hope to have good results in lessening some of it. My upper arms don't hurt as much now as they did. And I put that mostly to I was helping with a great niece as she grew and I couldn't bring myself not to hold her. She'll be two May 8th.)

So my advice would be to try and stay as mobile as you can. (Especially during the chemo portions of your treatment.) Try to keep your body upright to allow easier blood flow throughout your body. or maybe even elevate your feet at the end of the day if you've been on your feet for a good portion of the day. (That's a guess, this is all assumption and trying to help someone else avoid the muscle burn that I currently have.)

I actually felt the muscle burn during the chemo treatments but didn't think anything of it.(Well, actually I did think about it and tried to make a mental note to ask about it and completely forgot.) So I'm not sure if maybe I was just more susceptible to it since it felt that way with the first chemo treatment and hung around afterwards.

Kim (my actual name)

I would have eaten better
I would have eaten better (more), both before and after treatment.
And I would have been more diligent about drinking enough water.

Cheyenne said:

Weight loss
Losing weight is actually one of my biggest concerns. I have always been very healthy and was working out regularly before the surgery to remove the lesion. I don't have 20 lbs to lose. But I also have a HUGE problem making myself eat if I don't feel like it.

Weight
Hi, I am a little over 1yr post treatment. Like you I did not have spare weight to loose, worked out pretty much on a regular basis, and had a hard time eating during treatment. Please drink things like Boost or Ensure...I ended up so malnurished I was admitted to a nursing home for almost 3months hooked up to a nutritional supplement through my port. I have recently been diagnosed with Breast cancer now, and started drinking the Boost since day 1....I never want to go that route again!!! I know its hard but nutrition and fluids are so important.

Cheyenne said:

Thank you
Thank you so much for scaring me and I mean that in the nicest way. Your story is the motivation that I need to make nutrition a priority. I also read the post to my husband so he will probably pour stuff down my throat if need be! (Just kidding!) I do plan to add Ensure to my refrigerator and maybe a box of straws in case I need to lay in bed while I drink it. Again, thank you from the bottom of my heart. These personal experiences are so important for those of us who are beginning the walk.

I had two growths that were
I had two growths that were removed and biopsied - at the time I had no idea they would turn out to be squamous cell cancer. Because they were in the anal area, I purposely went without solid food for the week prior to the biopsy. I had read how much a bowel movement would hurt after this type of surgery, so I only drank juice (hoping to delay the inevitable bm). I lost about 5 pounds prior to treatment, and boy, I wish I had those pounds back once treatment started.


And again, after treatment - I had no appetite so didn't eat much. This board was not around back then (2008) so I didn't have the benefit of our wonderful peoples' knowledge. If I had, I would have asked my doctor for something to stimulate my appetite.

Four months after treatment I came down with TTP, a very very rare side effect of the mitomycin c. It was rough, very rough. I'm not sure, but I feel that if I had been better at watching my proteins and overall eating habits, maybe my body would have been able to fend off the TTP. Will never know, but I strongly recommend eating whatever you can and drinking plenty of water.

If you find you can't stomach the Boost or Ensure, try Carnation Instant Breakfast. If you like chocolate (and who doesn't) the milk chocolate is terrific.

Starting treatment
Hi Cheyenne,
I will also be starting treatment on Monday. I feel very prepared after reading all the advice that the good people on this board have offered. I know we will both do just fine, keep a sense of humour and a positive attitude.
Louise

wiveliscombe said:

Starting treatment
Hi Cheyenne,
I will also be starting treatment on Monday. I feel very prepared after reading all the advice that the good people on this board have offered. I know we will both do just fine, keep a sense of humour and a positive attitude.
Louise

Thinking of Louise and Cheyenne
I am praying for you both as you start this journey.

Don't be afraid to call your nurses, and don't try to tough it out without pain meds if needed!

I finished 3 months ago and it I can't believe how much better I am doing already. It is a distant memory.

Cheyenne said:

So far, so good
I've had a pretty easy go of it so far. I was feeling pretty sick for about 24 hours last Thursday and Friday but it passed. I haven't had too much problem with mouth sores. My throat was a little sore and I had some tender spots in my mouth but nothing that would stop me from eating. I had some moments of fatigue in the first week but I just napped when I needed to. Getting rid of that picc line and pack last Friday made me feel a WHOLE lot better! (HATE that thing!) By Monday I was feeling good enough to go out to dinner.

I know it's going to get rough before it's over but I'm almost through week two so then it's only 3 more weeks to go!

Good for you, Cheyenne. I am
Good for you, Cheyenne. I am a week behind you in treatment and it's good to know you are having so little trouble. I'm only on day 3 but have had no trouble so far. If I do run into problems, though, I am prepared for just about anything---thanks to all this helpful advice!

Cheyenne said:

So far, so good
I've had a pretty easy go of it so far. I was feeling pretty sick for about 24 hours last Thursday and Friday but it passed. I haven't had too much problem with mouth sores. My throat was a little sore and I had some tender spots in my mouth but nothing that would stop me from eating. I had some moments of fatigue in the first week but I just napped when I needed to. Getting rid of that picc line and pack last Friday made me feel a WHOLE lot better! (HATE that thing!) By Monday I was feeling good enough to go out to dinner.

I know it's going to get rough before it's over but I'm almost through week two so then it's only 3 more weeks to go!

Hi Cheyenne--
I'm glad you are doing fairly well so far! I hope you'll get by with minimal side effects. Take care, rest and drink lots of water!