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How did ya'll make it?

Lorikat's picture
Lorikat
Posts: 564
Joined: Jul 2011

I realize it is the time to begin to heal now that treatments are over but I can't seem to feel better emotionally. We start for home tomorrow and it is 14 hrs. We plan to take as many days as it takes to not be terribly miserable. Trying to plan (ha!!) for potty breaks, not gonna use those rest stops if I can help it. I read about a female urinal some where on this sight and bought one of those, lots of female wipes, even a few depends. Hope I do not need them. Scared of germs. Scared of not healing. Scared I will come back in January and the Doctor will say "sorry, the alien tumor did nt leave. We will try surgery and a "bag".

Always a little or a lot nauseated. Still feel like an upside down volcano erupting lava ..... I think I scared one of my friends off, she can't bear the stress and it is because she cares about me......at least I think so...

When do we give up???!!!

AZANNIE's picture
AZANNIE
Posts: 395
Joined: Mar 2011

Don't give up!!! You've made it this far. The last day I finished treatment (actually I almost didn't finish the last five radiation treatments because I was burned so bad), I didn't jump up and down...just felt kind of emotionally drained and numb. We've been through a lot. It does get better. I'm 3 1/2 months post treatment and energy level is returning and burns have healed. I've been planting flowers...good therapy for me.
So hang in there and take it one day at a time...safe travels... Did they give you any medication for nausea? In the hospital I was given zofran and that helped. I've also heard that ginger helps, but never tried it. For awhile I was drinking Boost or Ensure so I was getting nutrients into my system. I should be eating yogurt to get the intestinal tract back on track.
Take care!

Ann

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I guess it's good to get home but I was pretty sick after my last treatment and stayed that way for three weeks. If you can stay put for another month, I would recommend it. That's when you will begin to feel you are glad you went through what you've been through. I am two months out today and besides from some heavy legs and aches and pains, I feel better than I did before treatment began. But I was not well enough to travel until the last few weeks. I may be spoiled and I am definitely one of the older people here (61). Maybe some of the others had to travel after their last treatment. I just hope your husband is very understanding because just because you had your last treatment doesn't mean you are okay now.

Try not to worry about any more than you have on your plate moment by moment. The body is amazing but heals a lot better if you don't stress about stuff that's not about right now.

All the best,
Sandy

Lorikat's picture
Lorikat
Posts: 564
Joined: Jul 2011

Sandy, I am also 61 and spoiled. My husband does a good job of trying to understand, but you can't really unless you have been there!

I need to get home, I have dogs and a house sitter and I am sooooo tired and sick. Your sharing your time line helps. We are staying in hotels along thev way...it may take a week to get home but that is ok. one of many good things about being retired I guess.

It just is so miserable. So glad I can whine here. Other people just do not understand....Lorie

RoseC's picture
RoseC
Posts: 509
Joined: Jun 2011

For a while my butt hurt so bad I couldn't sit in the car comfortably. My husband put a blanket over the back seat to cover the seat belt attachments and a pillow for my head - I lied down in the back seat while he drove. It was much more comfortable than sitting in the front seat. Hoping this might help you on your trip home.

shirlann54
Posts: 161
Joined: Aug 2011

Its nice to have some one to talk to .like us you have to live it to know it.You will get better in a few weeks .I know your miserable.Its nice when you can whine to someone that understands its been 9 mo i still whine when i,m having a bad day.Hope you get home soon. have a safe trip.

z's picture
z
Posts: 1267
Joined: May 2009

You must get through this one day at a time, and one day at a time it will get better. I hope you have pain pills, I took the minimum amount and that worked for me. A lot of soothing baths too. I know I wouldn't want to be riding in the car, and I would want to be home with my pets and my house. I was able to drive myself to and from treatment. I had to as no one else was able, although if it was necessary I would have had my mom or friend drive me. I hope you'll be home in no time. I wish you well. Lori

Phoebesnow
Posts: 451
Joined: Apr 2011

Remember everyone is different u might heal faster than some and slower than others. Don't get hung up on numbers, exercise, food and especially external pressures. This is your time and u take as much time as u need. I know u will be loving home. What kind of pets do u have? The drive, I think is going to be uncomfortable, get a lot of cushion underneath u and u will be fine. Maybe take a sleeping pill. Make sure you have your pain prescription.

U can do this, if u pray, pray all the time, it is a form of meditation, it afforded me a lot of relief.

Keep in touch.

Carrol

shirlann54
Posts: 161
Joined: Aug 2011

I prayed all the time and still do .That was a form of meditation for me too .It help me get thru it.

Lorikat's picture
Lorikat
Posts: 564
Joined: Jul 2011

I have Bishon Frises.....3 of them! 13, 14, and 15.remember -about 11 or 12 years the bichon frisa took best of show at Westmenster dog show? Breeders started to overbreed people bought them because they ar cute and playful and paid no attention to the work involved. Weekly groomings, etc? My husband had gotten me one for my birthday, a show quality little girl (we had her spayed, show quality or not). Then people started dumping the less than perfect doggies in the desert! Pink and white dogs in the desert!

We rescued one from the pound the day he was to be put down, and the other from a woman who's new boyfriend kicked and broke the dogs ribs. Got then to reabilitate and find homes for......10 years ago. Still. Have them! Long story, and I know, wrong blog.....felt the love for a few minutes though, so thanks for asking.....lorie

PS Woman kept the boyfriend...do not know how that went, but most likely not well.

Angela_K
Posts: 374
Joined: Jan 2011

For me, Lorikat, I had to SERIOUSLY let go and let god. Not just talk the talk but walk the walk. I turned it over to him/her, dug in deep, prayed a lot for myself and asked others to pray for me.

We never give up. We give IT (worry and fear)up. (Or we try to anyway :))

Love and prayers and blessings to you!

alis7910
Posts: 80
Joined: Jun 2010

Hi:
I was 68 years old when I got the cancer; went back to work full time 6 weeks after finishing the radiation. It gets easier down the road, but remember, we all react differently.Stay in tune with your body every day, and give yourself what you need. Right now you need loving support. Try different ways of healing to balance out your energy, like Reiki and accupuncture. keep writing to us, because we know how you feel.

Loce and hugs to you.

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

Alis7910 alias Superwoman. I am working one of my jobs, doing most of the housework and back to regular rehearsals, but could not imagine working a full time job even now. The pain is so much worse with fatigue I have trouble climbing the stairs in our house. Were your blood counts low? Mine are still low. I thought I was tough but you take the cake~

Memphis Mary 49's picture
Memphis Mary 49
Posts: 52
Joined: Aug 2011

I finished treatment July 26. The first 2 weeks after were my most miserable of all emotionally. I cried all the time, over everything. I was so weak that I felt like a living dead person. I returned to work 4-5 weeks post (just 3-8hr days). My stamina was a bit low; and, I would get winded easily. My doctor suggested I get back to the gym like I did before I got sick - to build muscle back and gain energy. It was a pretty slow start. But, I did what I could - and forced myself to walk some too.

All this to say that now, I almost feel normal! We don't give up...EVER!!! Just focus on a day at a time and don't beat yourself up. Little by little, you will feel better and better! At this point, I just assume I have been cured until I am told otherwise. Having the "I'm well now" attitude instead of the "I'm sick" attitude helps in the healing. Stay positive!! Like the others, I prayed alot too! I asked others to pray for me. I still pray everyday for healing.

You WILL feel better!!!
Mary

analfighter
Posts: 12
Joined: Nov 2007

I know you have already decided to fight this to the finish, so I'm really going to ignore your "giving up" question. And I'm not going to retell my story which has been going on for 4 years. I just had my 120th maintenance chemo treatment this morning. I'm 62, and when I began this journey 4 years ago, there wasn't much on this site for anal cancer patients.

I reread what I wrote 4 years ago when I registered and I was amazed. I had forgotten a lot of what happened the first month. That is a blessing, and may the same happen for you.

If you want to read more of the events in my saga, check out my Relay For Life web page at http://relay.acsevents.org/site/TR/RelayForLife/RFLFY12National?px=2497865&pg=personal&fr_id=37656

I DO remember how thankful I was that I lived less than 5 miles from the cancer treatment center when I began chemo and radiation 3 weeks after resection surgery which removed an 8cm. tumor. Appointments were 7:30 a.m. I'd wake up in not a cold sweat but a freezing sweat. Sit up and the simultaneous vomiting and diarrhea would begin. My Mom would arrive and throw a blanket around my shoulders in the bathroom, clean up, help me get dressed and drive me to therapy, then drive me back home again.

The staff was very helpful in helping me deal with the symptoms as they worsened. From the "sunburn" to the metallic taste that made me Not want to eat. (You all know about using plasticware instead of silverware when doing chemo?) I had purchased tickets to the Rockettes' Christmas show at a theater 60 miles away for my family. I couldn't go because the show was on the 28th day of radiation and I could not travel, let alone sit in a theater seat for 2 hours. I stayed home and sent my sister and mom to the show. They set me up with Christmas videos and went and had fun. Your caregivers need respite from what all of you are going through, also.

I'm not sure which treatment you are returning home from, but I'd make the trip as short as is superhumanly possible. Get home to the comforts of home as quickly as you can.

How did I get through it?
My sister had people all over the globe praying for me. A family Australia even walked for me in a Relay for Life there.
When I had my colostomy surgery over Christmas, all of her staff at the branch in Australia made Christmas ornaments and sent a small white tree with them to my hospital room. All the nurses who were still working came in to see them.

Get a music track on an Ipod that fires you up, makes you remember what you want out of life, allows you to cry at times, and generally makes you happy. I have a set from Jo Dee Messina's greatest hits along with a few titles from some of her other albums which I play again and again.

Collect hilarious DVDs. Watch them. Laugh.

Read Brenda Ellsaghers books. Especially "If the Battle is Over, How Come I'm still in Uniform or
"I"d like to buy a bowel, Please."

Admit you are tired when you are and GO REST!! It's okay to let some things slide. If no one offers to do the things you think are important but you can't seem to get to them, Keep a list, and start asking for help. I was no good at this. I just let those things go until they got to be too much of a burden. Not good. DELEGATE!!

Having 2 cancer policies besides my medical insurance helped me immensely, and also the Sick leave bank at work. My accrued sick leave ran out after my 2nd surgery (colostomy) Because things didn't go well and I needed a 2nd one, I was out of work from January to June with so sick leave from February to June. The sick leave bank picked up all of that. The cancer policies have been wonderful, paying directly to me which allowed me to have money for the extras that major medical does not pay for. I didn't need help making mortgage payments or buying food, but many of my new friends have needed that kind of help. I could have made 100 mortgage payments by now with the benefits I've received. I recommend a cancer policy for everyone!!!! Someone in your family will need it.

When I was at my worst from treatments, I told myself I had one job to do, and that was to figure out what I could stand to eat to keep my nutrition levels high enough for my body to endure and recover from the treatments and fight any cancer beasties that might still be running around looking for a home. Sometimes that was drinking a boost drink. Sometimes that was comfort food of tea, toast, and canned peaches. I still eat that on chemo days, but I am now able to eat just about anything on the other days of the week.

Green Vibrance Powders A Breast Cancer patient told me about this product when my counts kept being low, and I continually needed a Neulasta shot (hated the side effects from this.) My counts DID go up, but an added benefit was that they seemed to act as a natural diuretic. I retained fluid in my hands and lower legs. This disappeared every time I took a dose. My friend said to put it in a fruit smoothie with yogurt and fresh fruit. I didn't like it with the sweet stuff. But I tolerated it in tomato juice or V8.

And finally, look for survivor stories to inspire you. My grandfather also had esophageal cancer. He once told my mom that we didn't need to worry about him, that He was sitting in the chair right next to him. Well, no one ever sat in that chair until long after Grandpa died. My dad was terminal with lung cancer for 4 years. What a fighter he was. Grandpa wasn't offered any treatments. Dad had radiation on a mass in the curve of the aorta. When I was told I should have surgery, chemo, and RT, I couldn't say anything but yes when I knew what they had done.

During and after treatment, I looked for inspiration at Relay for Life, this website, and ACS survivor stories. I wouldn't miss the Survivor walk at Relay or the Luminaria celebration on opening night. When you attend, you realize that many have led the way in the past, that they are there walking right along side of you.

I went to a workshop at the Moffat center in Tampa for anyone connected with colon cancer. They handed out a goodie bag and the B. Elsagher book I mentioned, "If the battle is over, then why am I still in Uniform" was inside. I found most of the morning sessions boring (for medical personnel) so I had most of the book read by the time lunch was served and I realized that Brenda was the keynote speaker. She, and this book are very funny and inspiring. I'd recommend it for anyone who has or will have an ostomy, particularly a colostomy.

http://www.amazon.com/Battle-Over-Why-Still-Uniform/dp/1931945063/ref=sr_1_sc_1?ie=UTF8&qid=1319481532&sr=8-1-spell

I've purchased several copies for my Ostomy support group to give to new ostomates.

It is amazing what we humans can handle.

So I say we don't give up on life.
We give up on worrying.
We give up on stressing over things that don't matter.
We give up on having to do everything we thought we had to do.
We start living a new life and give thanks for every day, every blessing.

analfighter
Posts: 12
Joined: Nov 2007

This post will be much shorter than my last one. I made it because i got a yorkie as radiation was ending. She had to be trained. I had to get up and get her out. And as I healed, she HAD to go for longer walks. She had too much energy to be cooped up in the house and not get to exercise.

So she got me up and about, gave me something I HAD to do, that I COULD do, and needed to do myself. Walking at sunrise was like a tonic. I didn't have to walk fast. She ran rings around me. I just had to stay 'unfoggy" enough to keep the leash untangled.

AND I spent the sitting/resting time thinking about what was really important to me. I discovered TV wasn't.

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