need a pep talk

ipetrou

I often read the site but don't often post. my husband, Matthew, is 34 and had rectal cancer. he has a total mesorectal excision surgery on june 16. surgery itself went well but first couple of days afterwards were hell under they figured out that he was in massive, uncontrollable pain b/c his abdominal muscles were too strong to let the temp ileostomy work properly - put a tube in and out came liters and liters of bile and stuff. some more ups and downs and he came home 6 days post-surgery with the temp ileostomy and JP drainage tube/bulb (still draining too much to remove it). I thought things would get better once he got home but they've gotten worse. he got bed sores and a very sore lower back in the hospital and it's still really bad so he can't sleep on his back for long - obviously can't sleep on stomach - and can't sleep on sides b/c abdomen hurts. and eating always hurts. and he's lost 20 pounds (185 to 165) in the last two weeks. so he's not getting hardly any sleep, little food, etc. etc. meanwhile, we have a daughter who is 2 3/4 years old and is having a really hard time with her papa not being able to do much of anything. next visit with surgeon is on tuesday. i am totally wrung out and depressed despite getting the fantastic news on friday that matthew has a total response to chemoradiation - no cancer found at all though they put him at stage III (went through rectal wall and 2 nodes suspicious) in early March. feel terrible that I'm not just elated at the great news and nothing else. and Matthew is horrified at the thought of starting chemo again soon given how hideous he feels now. sorry for rambling on for so long but it all feels a jumble and I am exhausted and stressed and returning to work tomorrow and I know all of you will understand (and not many others would).

ron50

Hi Ipetrou,
I was st 3 colon 6 nodes bad,had surgery ,cut from sternum to crotch,they let me out after 10 days ,was home alone ,my wife had to work, About the third day home I decided to go for a walk in the park , Walked out for ten minutes and stopped I was so crook, nearly passed out ,no one to help ,I didn,t know how I was going to get home, Well I did get home ,I did it one little step at a time,I've never felt so bad and so elated at the same time. Your hubby is out in the park ten minutes from home ,I know you can't be there to carry him but have faith that he is strong enough and tough enough to make it home to you and your little girl. P.s. That walk was nearly seven years go ,now I walk 5 miles a day and am cancer free ,Best wishes Ron.

nanuk

two weeks post surgery seems a bit soon for the chemo, esp. with the complications - possibly the doctor will wait for some healing. Did he have chemo -radiation before the surgery? Give this some time-it's major surgery, even for a 34 year old; I didn't start adjuvent therapy until a month or more post surgery, and total healing took a lot longer. bud

steved

SOunds rough on the both of you. Give it time though as it is early days yet and when you stand back and looka t the biger picture (excellent response to chemoradiation. succcesful surgery with clear margins and a previous young fit man) it looks quite bright. I am 31 and looking to have surgery at the end of this moth for rectal cancer after chemoradiation and have been told to be off work for a minimum of 6 weeks and more likely three months. They have also said that it is often up to six months before you feel back to normal fully. While suh long time frames are frustrating and test the patience they do put into perspective how early along the path your husband still. I think young people (esp blokes including myself) are often the worst at being impatient and expecting themselves to recover too quickly.
Try to be patient and keel an eye on teh bigger picture (such an amazing rexponse presurgery is rare and a fabulous indication of a good long term prognosis)
Steve

nettie4

hello there. sorry you are having such a hard time. my orig dx for colon cancer was in 98 and i was preg at the time. i had emergany surg and i too had that tube and was very weak due to being so sick with the preg. like your husband my back hurt for a while too. i could not sleep well either. eating was yuk and my husband had to go to work and i had a 13mth old to take care of too. it just takes time to heal from that kind of surg, but it will happen. the news you have is great and while you may find it hard to just be content with that now watching someone you love soooo much go through this and feel as though you can do noting plus having a child is frustrating, but in the end you will have your husband around a long time and a child to bring a smile to your face in the meantime as daddy heals. all anyone has in one day at a time and for my family it has been 5 yrs since all that. although right now dealing with recurrence. believe me i know your exhausted and frustrated but everyday that goes by is one more day as a family and one more day for healing for your husband. take care and know this too shall pass.

nettie

kangatoo

nettie4 said:

hello there. sorry you are having such a hard time. my orig dx for colon cancer was in 98 and i was preg at the time. i had emergany surg and i too had that tube and was very weak due to being so sick with the preg. like your husband my back hurt for a while too. i could not sleep well either. eating was yuk and my husband had to go to work and i had a 13mth old to take care of too. it just takes time to heal from that kind of surg, but it will happen. the news you have is great and while you may find it hard to just be content with that now watching someone you love soooo much go through this and feel as though you can do noting plus having a child is frustrating, but in the end you will have your husband around a long time and a child to bring a smile to your face in the meantime as daddy heals. all anyone has in one day at a time and for my family it has been 5 yrs since all that. although right now dealing with recurrence. believe me i know your exhausted and frustrated but everyday that goes by is one more day as a family and one more day for healing for your husband. take care and know this too shall pass.

nettie

Hi--sorry to hear hubby has had some complications.I had a lot of problems with pain but persisted with reporting to my sugeon and eventually got it under control.I am 48/male and was also cut from sternum to crotch.This does take quite a while to heal--they went thru all the tummy muscles--it is a major op.My surgeon told me if given a preference heart sugery is preferable to colon sugery--so your hubby will take time to heal.I was op. on in aug 03 and still can tell that my stomach was cut--they told me 6 months to recoup properly and up to 12 months to feel really back to square one.That was "if" I had no chemo--longer if chemo was involved post op.
I had 6 months chemo--completed in feb. 04 and even now get tired quickly.
Take it easy--tell hubby he will get there--he has had a major, major op.
You take care of yourself too--you are no good to himif you end up totally drained--make time for yourself to relax.I am sure he would be happy to see you have some relaxation time--I really impressed on my lovely wife, Jen that she must take a day for herself now and then.It is difficult for you to stop worrying, Jen can attest to that--but quality time for yourself is very important!
our very best--huggs from OZ--kanga n Jen

jsabol

My heart goes out to all of you. The physical and emotional toll of major surgery is, well, major. And your husband's complications must feel so discouraging for someone who's eager to be up and at 'em.
The nurse in me makes the advice just come pouring out, so forgive me. Firstly, do you need to return to work so quickly yourself? It sounds like, between hubby and daughter, you already have 2 full time jobs. The Family Medical Leave Act is helpful if you have any paid time left.
Has a wound nurse seen his bedsores? He would problably qualify for a home health nurse, and there are specific applications for each type of sore. Might help. I am often amazed at how much attention doesn't get paid to all those details that add up to make the day miserable.
I wasn't able to sleep on my side for weeks following abdominal surgery, but propping my belly on a big body pillow helped, although it barely left room for both of us in the bed.
Is there someone to help with your daughter. Kids can be so resilient and easily distracted; it could even give you time for some rest!
Of course you feel depressed; all the "what ifs" come crashing down, especially after surgery. If you have trouble eating and sleeping, too, I would talk with the onc about poss getting something for anxiety. I have used small doses of Ativan to help through sleepness nights and MD appts.
Is Matthew starting the chemo before 4 weeks post-op? That is usually the standard, but given his healilng problems, you can often wait an added week or two, according to my onc.
Hope you both have folks who are local and helping out. If anyone offers, take them up on whatever they can do, or have a few suggestions ready...you sure need the break.
So, hang in there. You WILL all get through this; your husband's youth and strength are both to his advantage. It's just so hard for all of us to deal with issues that are out of our control right now. Keep us posted. Judy

Fitlisa

Im so sorry for your suffering and that of your husband.

I started my chemo 2 weeks post surgery...I am 42, Stage III, had a resection on May 18,2004, stayed in hospital 7 days, started chemo on June 2nd. I dont recommend it but for me it was a choice I made with my onc. I too was cut from sternum to crotch, no doubt about it, this is major surgery and anything involving the abs is painful recovery-wise. I didnt want to wait 6 weeks before starting my chemo...once I was diagnosed, I came out of the gates with all guns ablazin!. I have no regrets now, but it wasnt easy. I read Ron50's post and totally understood....I too tried to walk too soon but now I am walking an hour a day and I am not yet 6 weeks post op (that will be tomorrow tho!).

I had some trouble tolerating my first 2 chemo rounds but that is settling down now. I believe, as my doctors have told me, the surgery was a complete success, they got clear margins and have every hope that my chemo is insurance and I will remain cancer free.

Your husband's prognosis sounds awesome...this too shall pass. Keep positive thoughts and keep posting here. We will do all we can to boost your spirits.

Lisa

ipetrou

ron50 said:

Hi Ipetrou,
I was st 3 colon 6 nodes bad,had surgery ,cut from sternum to crotch,they let me out after 10 days ,was home alone ,my wife had to work, About the third day home I decided to go for a walk in the park , Walked out for ten minutes and stopped I was so crook, nearly passed out ,no one to help ,I didn,t know how I was going to get home, Well I did get home ,I did it one little step at a time,I've never felt so bad and so elated at the same time. Your hubby is out in the park ten minutes from home ,I know you can't be there to carry him but have faith that he is strong enough and tough enough to make it home to you and your little girl. P.s. That walk was nearly seven years go ,now I walk 5 miles a day and am cancer free ,Best wishes Ron.

Ron - that was a truly beautiful note. Thank you.

ipetrou

Thanks everybody. It really helped me to read your posts. Matthew still looked like hell this morning but I am feeling somewhat more hopeful. Spoke to surgeon by phone today and sounds like everything he has (except for maybe bad low back pain) is within the range of normal, he's just healing slower than anyone expected. An ostomy and wound nurse is coming over to the house today (hopefully will help with the sores, etc.) and so is a dietitian - clear to me that Matthew needs to get some good nutrients in him in order to get a boost. Seeing his surgeon tomorrow and will push hard for something to help him sleep for a few hours, maybe Ambien. Seeing the oncologist on Friday and will find out his blood counts then - wouldn't be surprised if a few things are really off. July 12 his case is being presented to UCSF tumour board so we'll see what they all think re chemo (what, how much, how long) then. Of course I'd like them to say they don't think chemo is needed but odds of that happening are super low! Thanks again - I know I'll be rereading your posts quite a bit in the next few days.

2bhealed

ipetrou said:

Thanks everybody. It really helped me to read your posts. Matthew still looked like hell this morning but I am feeling somewhat more hopeful. Spoke to surgeon by phone today and sounds like everything he has (except for maybe bad low back pain) is within the range of normal, he's just healing slower than anyone expected. An ostomy and wound nurse is coming over to the house today (hopefully will help with the sores, etc.) and so is a dietitian - clear to me that Matthew needs to get some good nutrients in him in order to get a boost. Seeing his surgeon tomorrow and will push hard for something to help him sleep for a few hours, maybe Ambien. Seeing the oncologist on Friday and will find out his blood counts then - wouldn't be surprised if a few things are really off. July 12 his case is being presented to UCSF tumour board so we'll see what they all think re chemo (what, how much, how long) then. Of course I'd like them to say they don't think chemo is needed but odds of that happening are super low! Thanks again - I know I'll be rereading your posts quite a bit in the next few days.

Hi IPetrou,

Glad some help is on the way. Is there any family that can come and support you three while your hubby heals?

I have 5 kids and when I was dx'ed my baby was 20 months old. She was still nursing and wanting her mama to pick her up and carry her which I obviously couldn't (or was not supposed to) do. Enter my mother and father to the rescue. They moved from South Carolina to Minnesota temporarily to help. It was a complete God-send!! I probably would not be doing as well as I am without their help 24/7! Then I had another abdominal surgery last Fall to repair an incisional hernia so back to the healing I went.

As for trouble sleeping may I suggest looking into taking melatonin instead of sleeping pills? It is an anti-oxident and has been proven to shrink tumors when used in conjunction with chemo (but should ONLY be taken at night). Make sure you get the vegetarian supplement. It's something you can get at the natural foods store tho' I think even WalMart carries it. I take about 18mg and sleep like a baby. It is something that your body is supposed to make but when you're under loads of stress your body can be depleted.

As for nutrients I surely hope the dietician does not suggest Ensure or something like it cuz it is full of sugar and cancer feeds on sugar. Be careful since starving the cancer is key. Hospitals are not exactly known for their nutritious meals and they employ dieticians. May I also suggest you look for a natural nutritionist who is trained in cancer nutrition for healing...maybe a Naturopath.

A wonderful book:

Beating Cancer with Nutrition by Partick Quillin.

I feel for you and your husband and hardly want to give you any empty platitudes when he is feeling so rotten...but this too shall pass.

After my hernia surgery (I also had my hemmorhoids removed--NEVER do anal and abdominal surgery together--WHAT WAS I THINKING????!!!!), I was in such incredible pain that I thought I would never feel okay again. But I did after about 3 weeks.

Hope any of this helps.

peace, emily

Unknown

Your news is great!!! Dwell on that and not on the post surgery stage that you are in now. This will pass and your husband will recoperate and be is old self again real soon. I too had to go back to work one week after my husband's surgery and I felt awful about leaving him alone but in doing so, although at times very, very rough and just down right miserable, he did manage. I was always just a phone call away and had I ever received a call, work or no work, nothing could have kept me from getting to him.

Your husband is young and otherwise healthy. It's a major surgery that just takes some time.

Monika