How Long?
Everyone:
I realize that there is not a "correct" answer to this question, so ballpark estimates are welcome.
My wife and I had to terminate a social outing/visit this evening due to my level of discomfort. That was disappointing to both of us.
During the one hour drive home she asked me how long it is suppose to take before I am normal. This is a classic example of how cancer, and its treatment, affect spouses and other family members. Both of us were/are frustrated with this situation for several and different reasons. Anyway, I told her that I don't know exactly how long it will take.
And that is the question I am presenting to the forum. On average, how long does it take a person who underwent 25 sessions of radiation and chemo (oral doses of Xeloda) to recover enough to no longer be fatigued, and no longer need to sit with great care to avoid aggravating an overly sensitive rectum? In other words, how long will it take before Jim appears to be normal in a social setting?
Jim
Comments
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Hello Jim,
Hello Jim,
I can't answer your question directly but basically I've just avoided situations like that so far. Today, we're planning a one hour drive to get to the beach this afternoon and we'll see how well I do with that. I'm going to bring my coccyx cushion for the car to reduce the pressure down there. I have seen a blog on recovery after surgery but haven't seen one for recovery after chemo/radiation and I, too, would be interested in such a thing.
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Radiation
As you well know, it all depends...... Talking about Depend(s), I was wearing those for a good two months after my radiation finished..... on the individual.
So, it all depends on how many side effects you are having and what they are.
One of my biggest problems during and after radiation was the inability to control my bowel. If I needed to go, I needed to go NOW. Going anywhere was out of the question for me for at least two months post treatment. After that, I was able to go to places where I knew I could get to a bathroom promptly.
Weeping sores: The only releif I had was going commando (the no underwear apporach). The air and Witch Hazel did the trick, but then I found that I couldn't bare to wear anything down there. I'm sure it was psychologiical. I felt trapped. Its really hard to explain. And yes, I still go commando as often as I can because of that.
Fatigue: This also lasted a good two months after treatment. Eating right, exercise and resting when the body says it needs to rest, would be my advice. I still fatigue easily four years post treament.
Mind over matter (as in poop): Walking. I started off just around the block, then ended up running for the loo as soon as I saw the house. Then I was able to make it two then three then four blocks, but as soon as I saw the house, my bowel would want to explode. It was then that I realised that this was also psychological response and I had to learn to control it, which wasn't easy. I had more than a few soiled trousers before I got past that one.
I hope I haven't been too explicit. Trouble is, so many people suffer side effects that aren't talked about, because they are 'nasty'. Nobody told me I would be a walking poop machine for months on end. Even now, bathroom issues are a huge part of my life.
Take chances and make plans but don't be disappointed if you have to cancel. Be good to yourself and realise that the body has been abused and needs to recover. I'd say give it two months, but thats because my body took two months.
Chin up!
TRU
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This is the sort of stuffTrubrit said:Radiation
As you well know, it all depends...... Talking about Depend(s), I was wearing those for a good two months after my radiation finished..... on the individual.
So, it all depends on how many side effects you are having and what they are.
One of my biggest problems during and after radiation was the inability to control my bowel. If I needed to go, I needed to go NOW. Going anywhere was out of the question for me for at least two months post treatment. After that, I was able to go to places where I knew I could get to a bathroom promptly.
Weeping sores: The only releif I had was going commando (the no underwear apporach). The air and Witch Hazel did the trick, but then I found that I couldn't bare to wear anything down there. I'm sure it was psychologiical. I felt trapped. Its really hard to explain. And yes, I still go commando as often as I can because of that.
Fatigue: This also lasted a good two months after treatment. Eating right, exercise and resting when the body says it needs to rest, would be my advice. I still fatigue easily four years post treament.
Mind over matter (as in poop): Walking. I started off just around the block, then ended up running for the loo as soon as I saw the house. Then I was able to make it two then three then four blocks, but as soon as I saw the house, my bowel would want to explode. It was then that I realised that this was also psychological response and I had to learn to control it, which wasn't easy. I had more than a few soiled trousers before I got past that one.
I hope I haven't been too explicit. Trouble is, so many people suffer side effects that aren't talked about, because they are 'nasty'. Nobody told me I would be a walking poop machine for months on end. Even now, bathroom issues are a huge part of my life.
Take chances and make plans but don't be disappointed if you have to cancel. Be good to yourself and realise that the body has been abused and needs to recover. I'd say give it two months, but thats because my body took two months.
Chin up!
TRU
This is the sort of stuff that someone on another forum told me. I don't think that I'm there yet but am prepared if it does come to pass. And I did spend some time looking at Depends products and finding out that they apparently changed their manufacturing process resulting in weaker products. There seem to be some things that people don't talk about much and I guess that this is one of them.
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Normality
Jim: I am post colon surgery and on my last course of capecitabine. I am going to my neighbor's house today and hopefully will be able to socialize normally, but this is my first outing since the chemo. It is not that I think I am unable to socialize, but more that I have lost the desire. I was asking the oncologist on my most recent visit how long it will take to normalize from the chemo (no radiation) and he estimated two to four weeks. I will keep you updated.
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Two to four weeks?!!!MSandiaBuddy said:Normality
Jim: I am post colon surgery and on my last course of capecitabine. I am going to my neighbor's house today and hopefully will be able to socialize normally, but this is my first outing since the chemo. It is not that I think I am unable to socialize, but more that I have lost the desire. I was asking the oncologist on my most recent visit how long it will take to normalize from the chemo (no radiation) and he estimated two to four weeks. I will keep you updated.
i pray that is how it pans out for you.
Normal is just a dream away for me. Ha!
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Normal
We are now talking about a "new" normal. My rectum didn't heal for two years after radiation and wasn't able to sit down for any meal for that length of period but everyone is different. Your wife is probably expecting things to go back to normal the way she thought was "normal" but it honestly probably won't. You will have to find your new "normal" and that will be an experience. It's a one day at a time effort and no one can tell you how to feel or how you "should" feel. Just want to say, hope that things go well for you and continue to post your questions. Someone is always here to help.
Kim
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I'm starting week 4 today and
I'm starting week 4 today and the rectum was a wreck yesterday and this morning. Long driving in the car and the accumulated effects of radiation I guess. I assume that it gets a lot worse before it gets better and it sounds like better is far down the road. A really good coccyx pillow does help. I have an Aereo chair at the office and this thing isn't bad by itself either.
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Thanks
Thanks everyone for your responses. Collective experience and opinion is what I was seeking and that is what I received.
Kim's response resonated with me. The new normal. I have got to accept that, and then explain it to my family.
Happy solar exclipse!
Jim
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radiation/chemo( zeloda)
Dear JIM,
HAD 28 treatments of radiation with xeloda which ended on april 01, 2017. I would have to say toward the end of treatment it was no bargain but i got through it. I would have to say by the end of April I was back to work full time. I did have on few occasions a quick rush to the barthroom and now in august there really isnt any problems .My butt is no longer sore and when it was i just sat on a pillow and that really helped. Just remeber nobody heals at the same rate so give it some time.
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a lot...
I suspect a lot of your problems could be improved with supernutritional methods. I would look for MDs and NDs that use nutrients at high potency to improve fatigue, immmune function, digestion, skin, etc. Not your ordinary MD or RD.
We've used a lot of supplements and IV vitamin C on a careful technical basis for my wife and they've worked wonders for us. Although in a pinch we might use expensive brand that are available locally, we mostly mail order generic brands and shop Costco.
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