Hi all I was just wondering how many people returned to work after initial treatment and how long did it take. I know every situation is very different but did any one say well I am going to not work for 1-2 years given what we generaly know about this disease and live it up so to speak even if that was playing music or other things we never seam to get around to. Also was this a positive thing or negative way to go for anyone who did?

This is probably one of those issues that's different for everybody. My husband had 7 weeks of radiation and chemo. Initially he was told he'd need to be off work for 3 months after treatment finished. Quite frankly, I don't see how he could possibly go back this soon, what with the weight loss, fatigue, drug withdrawal problems, psychological state and on and on. I'll be really surprised is he could even do a graduated return by September.
It would be great to take a couple of years off to do the things we'd like to do, but keep putting off. And if you can afford it, I say go for it.
Anne

I can't remember now how long post Tx I stayed away from work but it was 3 weeks post Tx before I walked out of my tunnel and I'm sure it was another few weeks after that before I went back but I did start only working a few hours a day at first but before long I was back full+ time. As for you just go back when you feel up to it and let whoever know that you may not be there long at first, that you need to build up your work stamina so to speak.

Tony, if you can afford not to work for awhile I'd say do it. Er, don't, that is. I remember not feeling up to working - and I'm a writer so it isn't exactly carrying bricks that I'm doing - for a good 6 months post TX. And then, like David 1, I did so gradually.

I love the idea of taking time to enjoy life. We should all be doing that all the time anyway but of course we so often don't. I'm a year out and working full time and dreaming of a vacation!

David 2

Please keep your feed back coming, it is honest and appreciated. Yes we are all in different situations but I do think it is a question we all ponder and some go one way or another for very different reasons......Tony

Here in the US, most people have to work to survive. Many employers offer health insurance and in order to have health insurance you cant take off work like that. Who wouldnt want to be off for a few years while their health is good? In my world it wasnt an option. I was a single working mom of 2 kids. As their sole support parent, I had to return to work as quickly as I could all 3 times. Luckily, I have an excellent job that is more flexible than most employers and I was able to stay home long enough to heal before returning.

I was fortunate in that I had a lot of accumulated sick leave and vacation time. I ended up basically taking the whole summer off, and coming back part time in October, then back to full time in November. It was really hard, but I also think it made me be more engaged and gave me something to think about other than my illness. I still have a lot of "eating" issues and get very tired, but I was glad to be able to return to work.

Hi Tony,

My husband Ron is a finish carpenter so his job is very physical. He started back to work (part time basis) about a month after he finished radiation. In my opinion he pushed it too soon, but that's the kind of guy he is. He's not one to sit around....even if he needs to! After about 4 months, he was back to working on a full time basis.

Hope this helps,

Shelley

I guess I would represent an alternate perspective here. I worked all the way through treatment. I missed some time after the neck dissection, but that was it.

First, I was admittedly fortunate in that I did not have some of the dire side effects that others have from the treatment. Still, I lost a lot of weight and it was not easy. However, for my individual mind set, it was important to live live as "normally" as possible, both for me and for my family. I could have taken time off with fairly small financial impact, due to good temporary disability coverage, but I couldn't bring myself to do that.

Sure, there is merit to the "smell the roses while you can" school of thought, but for me that would just be a tacit acknowledgment that this disease was going to win, and I wasn't prepared to do that.

Would I recommend my choice to others? Probably not. It worked for me, however, and I came through a bit stronger and significantly more appreciative of life. We just returned from a 12 day Mediterranean cruise, and I'll celebrate three years from the end of treatment in just under two weeks.

These are highly individual decisions, and there truly is no right or wrong. You need to do what is best for you and your family. Nothing is irrevocable. You can start to take some time off, then always decide to go back. Conversely, you could go back to work, and then take off if it is too much.

Best wishes!

Thankyou Jeff and everyone, please keep your views coming as I think this is a huge topic. The living normally as to not, is very interesting as I can see that it does not let you give in to the disease winning.

The many individual situations probably decide the matter for many, as not to work is an option that is not doable in most cases.

I myself have had 9 weeks of work and have returned slowly building up to full time in a few weeks. My work has been wonderfull in helping me.

I have to say that I am not coping really well and do question the more time out option. I could probably take a year or 18 months of but it would knock me back a lot financialy and no guarantee of a job to go back to.......tuff stuff and your thoughts and experiances are of a huge help.
Tony

I will have a go at this question:

I worked as an Oncology nurse prior to diagnosis but mainly I was a stay at home mom. I picked up shifts every other weekend as it was important for us as a family that I raise my kids up not someone else. I worked approx 50hrs per month--I know, I know, big worker, huh?LOL I got paid very well as I was specialized in my field, so I didn't have to work a bunch and we just used my income as an extra. I, of course had to stop once I was diagnosed and my job was held for a year. I am not able to return due to the lack of strength to give full care to patients, the 12+hr shifts and pure fatigue so I'm now getting disability and enjoying taking care of my kids instead. I believe strongly in enjoying my family, making memories and living life to the fullest.

When I was diagnosed last May, I was determined to lead as normal life as possible. I called the radiation treatements a "bump in the road". I scheduled tx for 7am so I could have most of the day open. My treatments were a 15 min drive from home. For the first half, 16 or so tx, my energy level was decent and my challenge was dealing with dry mouth and sore throat. I had no problem working, playing golf, kayaking on the lake. About half way through, it seemed that I hit the wall and my energy level really fell. I cut my work schedule back to half time. Two weeks after tx completed, my energy was back to a level that I could work full time. Two months after tx completion, I took a 10 day bucket trip to Tuscany with my son.

My adventure with oral cancer was "a walk in the park" compared to many, for too many reasons to list. But without question, a positive attitude and faith in God played a major part.

After my first round of OC, I returned to work part time aprox 6 weeks after finishing chemo and radiation.

The second round of OC was only surgery but it knocked me on my butt. It was only 7 months post treatments that I had the recurrance. I was still recovering from the first round. I didnt heal and was very fatigued. It took me 4 months to return to work.

Next was round 3 which was 14 months later. It was almost exactly 2 years after my original diagnosis. This time it was a huge operation and Im still recovering 10 months later. I just returned to work part time but it wears me out. It was necessary to return to force myself to face the facts. Physically and mentally cancer has weakened me so much that I am not able to work at this time. I am retiring this week.

1999 my first tongue operation very little work missed. I think I took off about 2 weeks after surgery to regain my ability to eat.
2000 3 months after surgery neck/lymph metastasis with a modified radical neck dissection and 6 weeks of radiation. I don't remember the time off for the surgery. I remember being face down in my keyboard at the office a few times. The face down was diabetes related. It was a tough time to live with both cancer treatment and diabetes. I got to know the paramedics by name at my house. I kept trying and I'm stronger for it. 2 months after radiation I completed a 10K running race in a sub hour time. Fun but not relevant. I worked in a hospital at the time. The employee community came through for me with financial help when my sick leave ran out. Patient accounting spent the next 2 years driving me to financial ruin - literally - >$700 a month on 13 doctor bills. Anyway.
The last couple of times have been better, sort of. I have short and long term disability now. My job is patient and they know I work as hard as I am able to. I have not missed a bunch of time but I did lose a few weeks in the hospital with chemo and radiation treatment. My work panicked and hired two people to cover for me. They welcomed me back and life is ok now. It's important for me to work, mentally and financially. I'm only 40 and do not plan on letting cancer take any more of my life than it already has. I don't fight myself. When I am tired I rest and when I feel good I go and do. It has been my experience that coworkers and family and doctors can be supportive and kind but they have to be informed. I communicate with them all about progress and setbacks. So far so good.
mark

Hi Tony,
I aready answered this question on the 13th June when you posed it on another thread.
Do you have one of those bucket list's. Makes for interesting reading when you google it
How often do you need to be seen at the hospital now for follow up?
My delivery of the OCF wrist bands arrived today and if you email or send me a PM with your address I would like to send you one.
Gabriele

Hi Tony,

This is a question which I have been pondering as well. I am facing surgery similar to yours in a couple of weeks, and have been wondering how things will progress afterwards. My surgeon has said to tell work I'll be gone for a couple of months, which I have, but who knows how it will pan out.

I was fortunate to have been self employed the last time, three years ago, so I just shut up shop (metaphorically, not an actual shop) and we lived on my wife's income until I was in a state to ease myself back in to work.

This time round, I definitely have an uneasy feeling that maybe I shouldn't be spending whatever remains of my time in this world doing a job that, while I certainly don't hate it, isn't the highlight of my life. On the other hand, we have a young, growing family and the fact is you need money to survive, so some sort of work is always going to be in the picture for me. One thing I have decided is that I definitely won't be pushing myself back into it. Health (both physical and mental) has to come first now. We are extremely fortunate that my employer is very understanding, and also that both sets of parents are in a position to help out financially while I am not working.

I think for most people it boils down to the relationship you have with your job. If you're lucky enough to be one of those people who loves their job, you will naturally wan't to get back to it.

Just my $0.0168 worth (the exchange rate is slipping again...)

Cheers
Jules

hey guys
i didnt have all the chemo and radio, but they damaged my radial nerve during the graft (upper arm) which left me with constant pins and needles for 3 months and an arm/hand that didnt work...

the pins and needles meant i couldnt sleep for more than 2 hours or so at a time, so was really tired all the time.

If that hadnt happened (the arm) i think i could have gone back sooner than i did, which from memory was after about 2 months or so...and that was 2 days a week spread across the week.

after about 4 months had passed i progressed to 5 or 6 hours most days.

after 6 months (and still now) i do three full days, and bits and pieces of the other two. I'm going to try keep a 3 day base, as im not desperate for cash, and as much as i love my job there are other things i love more!

cheers
jon

I agree with Jeff. Stay as active as you can. I worked through out the treatment except for the surgery. Scheduled rad tx on my lunch breaks. Lunch was easy with the feeding tube....turn in my cubicle, pull it out, and throw down the liquids. Dr. thought I was crazy, but he followed my wishes and I was traveling the week after the neck dissection...staples still in place. Hard part was the month I couldn't talk at the end of them nuking me....but I was still productive and my coworkers were happy I was quiet.

Keep moving...

Hi
I returned to work 3 weeks after treatment finished but that was due to hubby leaving & I wanted something normal in my life. It was tough & is still tough, oh boy I get soooo tired. Very pleased to back at work though & full time. Yes Im giving myself a pat on the back!
PJ