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daveinwoodland
Posts: 16
Joined: Jan 2011

I'm still not feeling back any where near 100% pre chemo and radiation. Have been going to the gym, walking riding my bike to get my lost physical condition back, (or trying to). My end of treatment was in December 10, but I had many setbacks between then and now with various hospital stays for multiple related issues.

Before this all descended on me like a ton of bricks I was in very good physical condition (which likely helped me) but now it seems an uphill battle to even get close to feeling good again. Can anyone give me a straight answer in regard to getting back close to how you felt physically pre treatment or is this the new situation that I'll need to deal with?

It seems that I should be able to regain my previous physical condition but it sure seems to be hiding from me.

Lelia's picture
Lelia
Posts: 98
Joined: Jun 2011

Hi Dave: If you mean that your chemo/rad ended 12/10 and you've been hospitalized numerous x since then and yet are able to walk outdoors, ride your bike and visit the gym, YOU ARE DOING GREAT! I'm new to these boards and others may know your medical history better, and be able to comment more specifically. But from what I know, your progress sounds amazing and very positive.

DrMary's picture
DrMary
Posts: 522
Joined: Nov 2010

Doug's fairly busy, but I hope he gets a chance to comment soon - he and you are at the same point (today is his 6 month anniversary of ending treatment). He was playing hockey in early December and said he felt pretty weak, but that was expected. He seems to be up to his previous level of activity now - he plays a few nights a week, built a deck and is now putting in a patio (as well as working full time). He did work with a trainer at the gym before he went back full time, but hasn't had the time to go lately.

One thing I noticed is that he takes naps these days - just 20 minutes or so, but it seems to help. To someone who didn't know him before, he looks to be in amazing shape. However, since he was pretty much Superman before the kryptonite, I think he'd say he's not 100% yet.

RushFan's picture
RushFan
Posts: 223
Joined: Aug 2010

Hey Dave, you are doing great. And you will be back. I started to make gains back to normal at the 6-7 month mark post treatment.

I'm now 13 months post treatments. 35 rads, 7 weekly cisplatin. Started at 210 lbs., dropped to 175 lbs. No tube, barely made it without. I used to powerlift etc. and started treatments in fairly good shape, though had not seriously lifted in several years.

It was a gradual climb out of the pit...here's where I'm at today:

190 lbs. and that's where I want to stay. Leaner and feel much better here than 210-220 lbs.

I Workout with dumbells, some barbell work, bands, push-ups etc. three days per week.
Would do more if I had the time. Energy is no problem. Up at 5am, down at 10pm.

Appetite is great. Taste is 95% back to normal, saliva maybe 60% back to normal.

Best to you Dave, and all here...have a great weekend.
Chuck

Skiffin16's picture
Skiffin16
Posts: 8297
Joined: Sep 2009

It's slow, very slow...

Granted a lot depends on your overall going into this... I liked to joke and say, other than having cancer, I'm in perfect health.

I'm two years post, and at times still get tired early evenings. But I'm pretty active also, working full time, fishing and yard work on the week-ends, etc....

Have they checked your TSH and Free T-4 levels, especially if you had rads?

The thyroid takes a big hit during rads and fatigue could be a sign of a deminishing thyroid.

Best,
John

Daddisgrl's picture
Daddisgrl
Posts: 116
Joined: Feb 2011

My hub was in decent shape before cancer. He drives a truck; was getting up at 2am; active on weekends. He's 1 year ahead of you- had surgery Sept 2009- right tonsil; golf ball sized mass right neck; plus nodes- radical neck dissection- with a feeding tube on the same day.

November chemo (3 cisplatin) & radition (33) 1 4 day admission for a horrible case of thrush about 2 weeks after treatment started- had to take a few days of break with radiation because of pain- he also has Lupus- & was the 1st patient they treated with it; so they stopped for 4 days I think; so that everything ended 12/24/09.

The 1st 2 months were the pits; he had his feeding tube removed 2/22/10- 6 months after getting it. He was really depressed & the feeding tube was not helping; he was always in pain & made the decision to have it removed & improved within 48 hours. Going into March was also bad but he did physical therapy which helped.

By April 13th he was back at work with light duty which was driving 2 1/2 hours to work; then getting in a van & driving workers to pick their cars that they were delivering. He did that for 3 weeks; then got back in his car carrier & it was rough for him to get back into the groove of working; but he did it some how. When he got home from work he took a nap & continued to nap until late September.

He finally started to feel better in October; took a fishing trip to Mexico which ended up setting him back. When he got back he was exhausted; ended up with MRSA & thrush. By December he was forced to stop driving our truck due to lack of work so he was pretty much light duty again for the next 3 months; then was forced to switch jobs & he was back in the big rig & was doing great but the truck he's in is older then the one we own & has been beating his body up. He recently had 2 bulging disks; so he was out of work about 10 days for that.

It seems that his body is not ready to do really physical work.. I'd say he is 90% at 18 months out. If he was in our truck which is newer with air ride; I think he would be ok.

Think of it this way; it took months to run your body down with chemo & radiation. Your body is rebuilding itself & it will take time. If you're smart you will allow your body to heal & not rush it like my hub did. A Mexico trip is hard on a healthy person- he traveled from NJ (left 6:30 am w/1 plane change) to OH to pick up his brother; then to Arizona (arrived at hotel midnight EST) where they stayed over night (had few hours of sleep) to catch the flight to Mexico; once landed a 2 hour car ride to the resort. The return trip was direct from AZ to NJ.

Keep thinking positive & listen to your body. If it wants a nap; take a nap. You will eventually feel better.

ratface's picture
ratface
Posts: 1320
Joined: Aug 2009

To get back to where you started plus or minus 6 months minus any complications divided by any anomolies, accidents, injuries, or setbacks. Assuming zero percent mental fatigue and zero bad days. Multiply all bad days by the moons current rotational swager. Do these calculations only in darkness on the 3rd Tuesday of every other month. It really depends on so much stuff, I think you are just where you should be! As stated, check your bloodwork then progress at a reasonable goal from there. I think it's possible to surpass your pre-cancer health given your enthusiasm.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hey Dave,

I'm just over 5 months since treatment ended. I feel pretty good most of the time now but still get tired in the middle of the day and often take a short nap. I also sleep more like 9-10 hours a night now instead of the 7-8 that I used to. I lift weights a few times a week, try to do yoga and 1-2 hour hikes or walks daily and usually a big full-day hike once weekly with a day or so of rock-climbing thrown in per week. It seems like I can do more each week but I still get tired mid-day. I wouldn't say I'm 100%; maybe 80%. Compared to before I guess more like 60%. I try to avoid comparing to before because before was without cancer, chemo, radiation, pain meds, low blood counts, weight loss, etc., etc. etc. It just doesn't seem fair to make that comparison and it makes me feel bad. But if I compare to how I felt 5 months ago; wow! And to how I felt 4 months ago; again wow! Even to how I felt 1 month ago; wow! I'm not sure if I'll ever feel the same as I did before cancer and treatment. Maybe I'll feel even better someday. My docs told me at least a year to recover. I'll let you know how I feel in a year.
It does seem that how I feel is affected largely by how many calories I get in daily. 2000 is good but 3000 is better. I stay away from sugar which makes it more difficult to get that many calories in. When I do use sugar, I notice I feel crappy. I'm very sensitive to food now. Water intake is also huge for me. Anything less than a half gallon daily and I feel weak.
BTW, it sounds like you're doing really good. Keep striving to feel better. Stay on top of nutrition and sleep and hydration. Getting behind it hits hard.

Bob

daveinwoodland
Posts: 16
Joined: Jan 2011

Thanks to everyone again!

I should have been on this forum along time ago. I think it would have helped me mentally exponential to what I went through then. But that was then and looking forward is really the only thing important now.

Some have asked what hospitalizations I went through after chemo and rad so I'll list them quickly below. This took place between December 2010 and March of this year for a combined stay of approx. 25 days overall in the hospital.

1. Saddleback Pulmonary Embolism (O2 Sat was 79% at one point)

2. Hematoma from emergency room shots for pain. Went down right leg and butt (Couldn't sit for over a month)

3. Compartment syndrome left leg, was told that amputation was the next step. Luckily the swelling went down by the next morning. Caused by a fall due to the dizziness caused by the blood thinner and a bad ER doctor that didn't think it was serious.

4. Neck dissection (scheduled surgery) that at least went as expected with no complications.

The majority of the issues that I had to be put back in the hospital for were caused by the blood thinner I had to start on for the embolism. But that was a double edged sword as it was necessary to get rid of the blood clots in my lungs. I currently have a filter in my Vena Cava to catch any that may occur.

Looking back I know how bad things could have gone for me and I am thankful for that. Now if I could only taste more food and eat normally I'd be one happy camper. :)

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

I had to smile. Don't know how many of you saw the movie Ghost. In one scene thet are in the subway and the ornery ghost on the subway talking to Patrick Swaze (sp) is pissed off because all he wants is just one more "cig". I feel like that ghost..."ahh if only I could eat and taste one more meal like the old "normal" used to be.

Problem is I can't get a mean disposition cause my wife would kick my butt :>)

You are doing great all things considered and hope that some day you are a "happy camper".

fisrpotpe's picture
fisrpotpe
Posts: 1349
Joined: Aug 2010

my treatments started jan of 96 ... I was 38 years old had the world by the balls prior to that ugly time. I have not ever been the same since and to tell you the truth I would not want to be there. I love my New Normal and thankful I am here. Normal is what you make it!

Good Luck
John

Skiffin16's picture
Skiffin16
Posts: 8297
Joined: Sep 2009

Normal is what you make it!, well said John.

Even though it's always referred as your "New Normal". Normal to me is just how I am, I don't really equate that to having had cancer and the results of treatment.

We are always constantly changing and it's dynamic.

Every cause and effect event in your life leaves you with a "New Normal" in reality...

~John

D Lewis's picture
D Lewis
Posts: 1577
Joined: Jan 2010

OK, where is the 'like' button for this post. It's a keeper.

Deb

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