Looking forward to today?!!??

goldfinch · March 2005

I know that we are supposed to wake up each morning grateful for the brand new day, but how do you do that when it hurts to go to the bathroom every time you go (and you go a lot, because of diarrhea, and besides, constipation hurts too, because you are still fighting that anal fissure), and everthing you do takes all your energy because you are just soooo tired? You hate to leave the house, because you never know if you'll need the bathroom right away and besides you are just soooo tired? I know the alternative is that i won't have a brand new day...ie the beast wins...and that is not an option either, but sometimes it is just sooo hard to wake up with a smile on my face.
Mary

steved · March 2005

You have eloquently described how so many of us have felt at times throughout our own journey with this beast. Your feelings of doubt and at times hopelessness about the situation are normal and I would worry if you didn't have them- those that charge through seemingly without any doubt usually are so entrenched in denial they never really face up to the reality of this illness. So your worries show you really are facing up to it and you are human after all.

There is little one can say to make it easier for you though except that time is the greatest of healers and many of thesse problems do improve with time and little help from the docs and nurses. Accept your body has had one of the biggest insults it can possibly be given with all teh treatments and illnesses and it will take time to recover and cope with it.
Try to find the things in your day that do make it worth while. For me it is my 10 month old son's smile, a hug from the wife and the feeling of having done some good at the end of a days work. For you it will be something different but find out what it is. Think about haw you can do more of what ever it is that is good and brings you joy and focus your thoughts on that whne ever these doubts get too much.
My thoughts are with you and I hope you find the strength to keep on fighting,
Steve

spongebob · March 2005

Mary -

I understand how you feel. When I was doing chemo I was working full time plus I had to get a part time job in order to make ends meet because of all the costs associated with the divorce that was handed to me immediately after my surgery. I didn't get to see my kids, I was physically and mentally exhausted, I was sick. The way I saw it at the low points was that I was merely keeping myself alive so that I could work and give everything I earned to someone else. Nobody cared except if I were to go away the money would stop flowing.

Well, when I would get to that point, I would look at my sons' pictures and know that I had to carry on for them. I would also look around at the people I knew who did care about me and the beautiful world outside of my door. I knew I had to push on for myself so I could be there to enjoy all of it.

Each day, I tried to do something nice for myself. Be it something as simple as having a cup of ice cream or a massage or something more involved time-wise and physical-wise like a drive to the ocean for a walk on the beach or a drive to the Shenandoah Valley to look at the leaves changing.

Mary, there are people who care all around you. There is a beautiful world waiting for you to experience and enjoy it. Mostly, Mary, there is calm weather after the storm. Focus on the future, do something kind for yourself - every day, know that many of us here have walked in your shoes and we're here for you also.

Love yourself, love others, be happy, know you are blessed, seek the silver lining, be well (in that order)

- SpongeBob (who drops the BS and waxes deeply philosophical every now and then)

alihamilton · March 2005

Hi Mary, SB and Steve have said it so well and it will get easier. As a caregiver, I cannot know what you are going through but I must say my husband still suffers much anxiety regarding the need to go to the bathroom suddenly. He has to sit through long meetings and says he sits there holding it in (he is lucky to be able to!) but is most uncomfortable and nervous. He very rarely complains but it reminded me that this disease affects your life forever. Other people see you as "cured" but we know the fear of recurrence and the long term effects that may not be obvious to the outside world.

I can only endorse what has been said by Steve and SB....finding something positive in each day, develop positive relationships and look forward to better times.

Ali

kerry · March 2005

Hi Mary,

I'm so sorry you are feeling so yucky. I too had to pull myself up during my treatment. I even said that if I ever had to go through chemo again, "I don't know if I would do it". Well, guess what?? I had to go through it again and I did because I did not want to let this disease defeat me.

I know also that is easier said than done when you are feeling so awful. Just know (as Sponge Bob said) lots of people care about you. There will be a light shining at the end of the tunnel very soon. Come here whenever you feel really down and let us help you come back up.

Take care and know that you will be in my thoughts and prayers as you go through your treatment.

Kerry

Kanort · March 2005

Dear Mary,

Please know that we have all felt like you do today. I remember at my lowest point I would say to my friends, "It's OK. Tomorrow will be a better day!" And it always was.

I glad you were able to post your true feelings here. Sometimes just getting out the truth to how we are really feeling helps. Please know we are with you and wishing you well.

Kay

Btrcup · March 2005

Mary, so sorry you are feeling so down. I am my hubby's caregiver so I can't say I know what you're going through, but we have an appointment with his oncologist tomorrow to discuss 2nd round chemo. His first round was FOLFOX4 and now we are going for FOLFIRI. I hear this can make you extremely sick. Hopefully, he will handle this as well as the first go around.

Keep your chin up! No matter how awful you feel, know that there are people who care and watching someone they love go through this and feeling so helpless can be a terrible ordeal also.

Linda (Baltimore)

madu · March 2005

Mary,

I had many of the same issues and had some practical suggestions made to me by various docs (although I didn't have a fissure so I don't know if my suggestions would hurt that).

1. Eat fiber like Citrucel - it sounds a little counterintuitive - who wants to go more- but my gastro swore it would bulk the stools up and help them pass through easier - it did help! and I still take it.

2. My gastro also suggested a perianal cleaning lotion called Balneol lotion - it's a gentle, cooling lotion - she also said not to use soap in that area - very drying.

3. My gyn suggested using a baby balm - I can't remember the brand but I'm sure any for diaper rash would work (think it had hydrocortisone but not sure) - he said that the chemo will pass through your system and can burn the skin. It helped provide a protective layer and helped heal the skin.

4. My onc prescribed a prescription suppository - something like anusol HC - and it REALLY helped.

5. For the diarrhea (which will wear you out) I took Immodium at the first sign b/c my onc didn't even want it to start. I also heard mashed bananas with cinnamon is good to eat for this.

Check with your docs they may have other suggestions (i.e. did you know beef is very hard to digest?) but most of all take care of yourself and give yourself a break if you're tired. The bathroom immediacy will pass - I promise - and getting out and around will help your energy and digestion through the colon.

Heidi

CAMaura · March 2005

Hi Mary,

There are so many wonderful wishes of strength coming you way right now...that I know you must at least feel the calm of caring support. I wish you that as well. It is hard...I do wake up with energy...but then plummet (sp) mid-day.
Now this may be hard to do, but if there is any way to time just short trip outside - maybe right after a bathroom trip.....it might clear your mind.
Just walking outside your door and around the block might give your some refreshment.

Take care and my thoughts are with you.

Best Wishes,
Maura

I think, by now, we are all Imodium stockholders.

Moesimo · March 2005

Mary,
I feel so bad for you and wish that you were not having such a difficult time. I am sending you a BIG HUG. I remember not wanting to get out of bed when I was feeling so miserable and then I would have to go to the bathroom and would get up.

I took frequent tub baths and narcoctic pain meds helped when I had frequent trips to the loo.

I hope that you are able to tolerate your treatments. I will say an extra prayer for you.

Maureen

johnom · March 2005

Dear Mary,
I noticed you wrote your note at 4:30 a.m. That's when I was pretty much most aware of the condition you described, too.
BUT, who says you have to wake up with a smile every single day? Sometimes it's just enough to say "Damn, I made it through the night".
I finally slept in the bathroom one early morning when I simply couldn't get away from it.I did take frequent baths, sometimes only putting a couple of inches of water in the tub, but in truth it ALL gets old doesn't it?
Everyone's advice is so true. Don't be hard on yourself at this time in your battle. It's miserable, but there is an end to it. The battle between constipation and diarrhea was about the worst thing I went through, but I carried supplies with me and left the house sometimes just to refocus myself. Maybe that would help you?

We are all pulling for you. You can feel the hands reaching out. Take them and relax while you heal. Take care.

slammer · March 2005

Hi There Mary, Talk about advice, man you got some.... I remember also the "don't want to get otta bed & feeling aweful", I am doing it again since I am doing chemo a second time around: I hate it and know when I will feel yucky. I hate the bathroom trips(my favorite place) I tell my family, and I began to hate jello (who can hate jello) BUt that is cuz that is all I could eat, w/ mouth sores & all. I could go on but we all know the degrees of chemo, etc, so please hang in there. It all sucks but this time around I know I am saving my life( I hope)so here I am round 2 of chemo at 44 yrs of age! I should be riding a Harley & all but a pause in my life for now---I am sorry you are ill , but you have the prayers of many & the hopes too, God Bless & take Care
Love Amy

madu · March 2005

madu said:
Mary,

I had many of the same issues and had some practical suggestions made to me by various docs (although I didn't have a fissure so I don't know if my suggestions would hurt that).

1. Eat fiber like Citrucel - it sounds a little counterintuitive - who wants to go more- but my gastro swore it would bulk the stools up and help them pass through easier - it did help! and I still take it.

2. My gastro also suggested a perianal cleaning lotion called Balneol lotion - it's a gentle, cooling lotion - she also said not to use soap in that area - very drying.

3. My gyn suggested using a baby balm - I can't remember the brand but I'm sure any for diaper rash would work (think it had hydrocortisone but not sure) - he said that the chemo will pass through your system and can burn the skin. It helped provide a protective layer and helped heal the skin.

4. My onc prescribed a prescription suppository - something like anusol HC - and it REALLY helped.

5. For the diarrhea (which will wear you out) I took Immodium at the first sign b/c my onc didn't even want it to start. I also heard mashed bananas with cinnamon is good to eat for this.

Check with your docs they may have other suggestions (i.e. did you know beef is very hard to digest?) but most of all take care of yourself and give yourself a break if you're tired. The bathroom immediacy will pass - I promise - and getting out and around will help your energy and digestion through the colon.

Heidi

I just remembered the name of the baby balm - it was balmex

Unknown · March 2005

This comment has been removed by the Moderator

Looking forward to today?!!??

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