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How do you find the balance?


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Hello all,

As you know, I'm completely new to this and haven't yet had a chance to participate in a Zoom meetup or other group discussion. Adam's first treatment was two weeks ago today, so in one week we go back for the next. The side effects have not hit him as hard as we expected, with the exception of fatigue. I recall early on in this journey that it was advised to try to continue hiking, though maybe smaller hikes (we usually put in 8-10 miles), and that remaining active would help him feel better. That thought just baffles me now as I cannot even imagine getting him to take a 30 minute walk. We're shooting for a 15 minute walk occasionally at this point. He is still working when he can, so between that and the fatigue, exercise seems like an impossibility. I struggle with finding the balance of letting him sleep because I know he needs it, to feeling responsible for getting him up and moving around. I realize it's likely that I'm overthinking this. Thanks for any advice you can give.

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Suzanna,

It should be a question you can ask his doctor who is aware of the side effects and the intensity of how they are affecting Adam.  You may find that once Adam is up and moving he can do more than you thought possible.  Of course if he becomes very tired he should rest and recover, but after my surgery the first time I walked around my house I had to go lay down.  Five weeks later I was getting close to my five miles/day I was doing pre-surgery.  Your husband's case is different in terms of the treatment but in each case he and I had to push through fatigue while we rebuild our stamina.  Start slow, keep building up, rest when needed.  Good luck to you.

Lou

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Suzanna: There is no easy answer to this question. We all  react differently depending on the medication, health  and side effects. Even with that we don't react the same way each and every day. There is no benefit from exercising when sleepy and  exhausted. When I started  treatment it was difficult for me to even try but now things are looking better and even the oncologist told me to begin exercising.  If it were me I will not rush into anything.

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Thank you both - these are helpful responses! I just want to be sure I'm doing the right thing and either not pushing too hard or not being too lax. It's encouraging to hear your experiences!

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Suzanna-

I have experienced the same thing with my mom.  And what I have learned over the past 5 years is that my mom is the best judge of what she is physically able to do and what she cannot.  I do know that my mom will rely on me more rather than doing something herself, if she can get away with it.  In those cases, I typically just say I am busy and she needs to fill her own water glass, etc.  I used to micromanage my mom's activity, but it only added to my stress and didn't affect the outcome of her treatments.  My suggestion, from one caregiver to another, is let your son decide what he feels up to that day.  Doctor's can say what they think he should be able to do, but everyone responds differently to treatment.  If his inactive-ness turns into an ongoing concern for you, that is when I would step in a say something.  In that situation I would be more worried about depression taking over than just being inactive.  And please remember, this is temporary.  

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Suzanna, my experience with treatments (chemo and radiation) was very rough and I was basically bedridden for weeks due to pain and fatigue. Exactly one month after treatments ended, I needed emergency abdominal surgery due to side effects. It took me months of recovery, which included occupational and physical therapy, before I was able to resume normal activity. 

Adam's side effects are temporary, but right now his body is fighting hard. It may get worse before it gets better. This fight takes a lot out of you both. If he's working, that alone may sap all of his strength. Hopefully he can manage to eat and not lose weight. Also, protein intake is important at this point. 

Hoping for a good outcome for Adam. 

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Suzanna,

Thank you for updating us on Adam's side effects. I found treatment sapped my energy levels and there was little my wife or doctors could do about it. Two problems I encountered to watch for: weight loss if appetite wanes, and depression. The latter was very hard for me because soldiering taught me to "tough-out the hard stuff." Lung cancer won that battle, and I needed a lot of "encouragement" to seek treatment.

Stay the course.

Tom

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I am so grateful for your insights - they really help! A new twist has developed for us in that unfortunately, we were evacuated from our home because of the wildfire burning close by (about 5 miles right now) and our community is in imminent danger. Not at all what we need, but we are trying to make the best of it. Adam's next treatment is Monday, so we're hopeful that we can be home for that, but if not, we are safe and comfortable and will do the best we can. Adam is handing all of this incredibly well. As for me, this put me just a little over the edge. Good character building or something like that. 

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@Suzanna, my nephew lives in Fort Collins and over the weekend the fire rained ash on them. Having to evacuate and survive both a wildfire and cancer is daunting for sure. I hope your home is spared. Please take care and be very careful of the air quality. Living in the West, I'm sure you know the drill with wildfires like we do in California. 

Glad you are in a safe place. 

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My son and his GF are in Estes Park for the weekend (staying in a cabin) and he said it was pretty smoky from the fires and they were keeping an ear out for any evacuation instructions. I think they were planning to head home (to Englewood) right about now anyway. 

I hope your home and neighbors and community are all safe!

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