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Can I work full time, is it reasonable, just new diagnosis?

kirby77
Posts: 48
Joined: Jul 2012

I am a gay man, and noticed not too many men comment on this board;I just had an transanal excision, my pathology came back "squamous cell ca". I admire all the women who have posted here and supported and educated each other, would you please assist me?
I have a few questions about what to expect and how to manage over the next several months.
Here's where I am for now. Besides thinking very negatively and wanting run away from it all.
I have not had any other diagnostics yet, CT pending,oncology and radiation specialist are pending. I am one week post excision.
I need to return to work, I don't want to burn thru my paid time off. I sit 50% of the time. I am still having pain while attempting to have a BM, and difficulty iniating urine. I am giving it a couple of days to improve, and then wish to return to work.
I expect that by the time I am completely healed and ready to start treatment another 2 weeks will have elapsed.
Do you think I can have radiation in the morning, go to work and function?
I am generally a strong person and able to push myself.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Hi Kirby,
I was able to return to work two weeks after my initial biopsy. Once treatment started, I worked full time for four weeks (with my company's help - they paid for the time I was at treatment). After four weeks I became too tired to work full time but I continued on a part-time basis. Weeks six, seven, and eight were rough because the radiation burns were very uncomfortable - if I remember correctly I worked part-time, a lot of it from home. After (I think) eight weeks I began going into the office again, part-time. I hope this information helps. Wishing you ALL the best.

Cheyenne's picture
Cheyenne
Posts: 76
Joined: Apr 2012

A lot of it depends on how you react to treatment. Some people have a rough time with the chemo. For me I felt sick for about 24 hours during the first round and would have taken off two days if I had been working. I also would not have liked to try to work carrying around the pack that delivers the chemo. That was Monday-Friday the first week and the fifth week. If your job requires any lifting, you aren't supposed to lift more than 8 lbs. with the arm that has the tube in it if you are getting a picc line. I also had a problem with low white blood cell count starting at the end of week two. I was told to stay away from anyone that might be carrying germs and to wash my hands frequently.

Some people have more trouble with the radiation. For me it wasn't that bad. Eleven days after radiation treatment ended I rode in a car for 8 hours for a vacation to Florida. Sitting for me was more uncomfortable after the excision than it was from radiation. I was having to sit sideways for awhile after surgery but didn't have that need during or after radiation treatment. I did have to use a squirt water bottle when going to the bathroom but I was done with that before we left on our trip. I did stock up on several different products to help with itching. I also took two Advil just about every night before bed. I also used the percocet for awhile to help me sleep but I didn't really need it for the pain.

kirby77
Posts: 48
Joined: Jul 2012

I just got out of the tub, the purpose was two fold, to relieve my bladder retention and pain. And yes, I do need to return to work soon.
Having your perspectives of modifying or taking a leave is helpful. I am pretty caught up in what might happen. I do realize all response are individual.

I am not sure which direction to take, but will plan on giving it a try and and then wait and see.

For now, I am not sure what to expect, although I have read the protocol for treatment. Some of the Thriver stories I've read, really scared me. I'm like, I don't think I can tolerate the radiation burns or side effects from treatment.

Reading many of the 18 pages of posting, both reassures me and scares me.
I am anxious about balancing everything and earning a living. Right now it feels like too much.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

I am sorry you have a need to join us here, but glad you've found us. As for what to expect, as has already been said, it varies from person to person. I was very fortunate in that I didn't have to worry about working during my treatment, but I can understand your concerns. If you've read a lot of the posts here, then you have a pretty good idea of what you might experience, emphasis being on the word "might." You can arm yourself ahead of time for any side effect that could happen, based on the information here. I, for one, could probably not have worked during treatment, at least the last 3 weeks or so. That being said, I went through treatment without the benefit of this support group or any other support group, so I didn't know most of the things that are helpful. People who have actually been through this can be of more help than the doctors in most cases. Please rely on us to get you through this, that's why all of us are here. I wish you all the very best and hope you'll keep us posted on how things are going.

Cheyenne's picture
Cheyenne
Posts: 76
Joined: Apr 2012

Here are a few things that I think really helped me along in treatment and recovery:
1. I drank at least 6 16 oz. glasses of water a day.
2. I kept moving. I would go upstairs to the bathroom every time I needed to go. And
with those 6 glasses of water a day, it was often!
3. Aqauphor ointment. It has to be off for radiation but after radiation,I piled it on!
4. Getting radiation moved to 7:30 a.m. Getting it over with early in the day was
mentally uplifting plus it gave me the rest of the day for whatever.

I'm sure there are other things but those are the ones that pop out the most right now.

Edit to add: One thing I used A LOT towards the end of treatment was a gallon sized zip lock bag filled with ice and strategically placed depending on where the itching was worse (front or back). It provided a great deal of relief!!

mxperry220
Posts: 369
Joined: Mar 2011

Although I am retired there was no way I could have worked during treatment primarily due to excessive diarrhea. My job would have required me to commute 70 miles per day. Even though the radiation burn was like a severe sunburn without blisters it was very uncomfortable if I was not wearing sweats. Also, my energy level was zero and I lay around the house most of the time. I had 30 rounds of radiation(6 weeks) and 2 weeks chemo. Again everyone is different. This is just my input as it affected me. Hope this helps.
Mike

rds711
Posts: 113
Joined: Dec 2011

Hi Kirby,

I was diagnosed 12/2011 and finished radiation and chemo 4/2. I worked full time through the first 3 weeks of radiation. My job requires sitting about 75% of the time. I found that I could work up until the end of the 3rd week of radiation, the biggest issue was being really tired but I was also beginning to experience some burns in my perianal area that did not allow me to sit normally, I sat on one hip or the other. I think it is important to get as much rest as you can to help your body. Drinking fluids is MAJOR! You do not want to become dehydrated and getting in lean protiens (protien is your body's basic building block for tissue repair). I drank instant breakfast and gatorade with protien, ice cream was good as was popsicles when I was getting chemo (to aid in decreasing mouth sores). Watch for diarrhea as diarrhea can cause you to become dehydrated quickly, I took immodium as I needed it. On the other hand you also do not want constipation which can be painful, so you do a balancing act with the immodium versus stool softeners. During radiation I wore loose fitting boxers or no underwear, went to treatments in sweat pants and at home wore nightshirts and patient gowns to allow as much air as possible to the area. I used aquaphor cream everday after treatments to my perianal area. It is important not to have anything on your skin during the treatments as it could increase the burns, thus I found early morning appointments the best for me. I drove myself to all of my treatments but I lived very close. Towards the end I kind of waddled a bit.

Know that everyones experiences are different. I consider myself lucky. I did not really have nausea so eating and drinking was not a problem for me. The roughest was about week 4 when the radiation was really accumulating. I had 5 1/2 weeks of radiation. The last 2 1/2 weeks were rough, not undoable but rough, I leaned heavily on my partner and sister to get me through that period. Silvadene ointment was a God send for me with the burns and I used alcohol free baby wipes instead of toilet paper after bowel movements, then only patted, no wiping! Others here used water bottles to spritz the area and sitz baths. The good news is that on day 9 after last treatment the pain from the burns just dissipated, like overnight and then I healed very quickly.

The radiation center I went to was very accomadating as far as scheduling times for my treatments, of course I am in a small town but they were awesome.

I have few side effects thus far. My bowels are fairly normal and I eat pretty much what I like, others here found their tolerance for fiber other things more troubling. It did take awhile to build up stamina, the radiation will make you tired for sometime after it ends. Make sure you give yourself permission to rest when you need it.

I know its all so overwhelming. I didnt start treatments until the end of February and the waiting to start was like my world was upside down. Once I started I felt a lot better as I was finally doing something! Hang in there! Pull loved ones close and allow them to help you when you need it. You can do this! This website was my lifeline, I got invaluable information and support, the people here got me through it, literally. So please stay connected here, ask your questions and update us on your journey. There are truly angels here who are willing to help.

I will keep you in my prayers, you are not alone Kirby and you will make it through! One person here coined a phrase that became my mantra "Weeks for years!".

Randy

vette123
Posts: 4
Joined: Jul 2012

Hi Kirby. I am 46 and was just diagnosed 4 1/2 weeks ago and this is the beginning of my 3rd week of treatment. I am still working. I too want to conserve my time off. Last week my mouth hurt very bad and I couldn't eat hardly anything. I am a nurse and having radiation treatments on my lunch break. I thus far have not had any problems working. I do get a little tired on and off through the day. I hear that things are to get worse before they get better. I am determined to get through as long as possible.I think you should be able to work at least in the beginning. Hope this helps get you started. Yvette

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

for mouth sores, get a rx for caphasol. it works. i had horrible sores the first week. I could not have worked at all. i had severe side effects. put in hospital at MD Anderson. took months after tx for me to heal. everyone is different. sephie

kirby77
Posts: 48
Joined: Jul 2012

I am feeling very guilty about not working and financially it is burdensome. I am wondering if you have been able to continue to work with radiation and now I presume your second round of chemo?

I know everyone is an individual in terms of response, I just wondered how it was going for you. I am also a nurse, and feel like I could not have performed my job in total over the last several weeks. The weeks after my first surgery excision of the mass, I had a bleed which required a repair(suture and ligation), complicated by almost 10 days of urinary retention. My mass was next to my prostate according to my surgeon. I had to tub bath to void and later sitz bath to void. Luckily, yesterday I saw a urologist who scoped me and said my prostate was swollen yet didn't appear to be cancerous.

Do you think I could return to work? My urinary retention has resolved. This is middle of week 2 for me, if I return, what are my chances of having to go back out on disabilty soon?
In my state you have to be disabled two weeks before you are eligible for state disability, it would reset my eligibility if I return.
I am risking too much by trying to return, when the worst is yet to come?

Cheyenne's picture
Cheyenne
Posts: 76
Joined: Apr 2012

The biggest risk for me was my low white blood cell count. I was told to avoid anyone that might have germs and to wash my hands frequently. As a nurse, that could be a big problem for you. I think the count dropped at the end of week 3 and remained pretty low for the remainder of treatment.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

It probably wouldn't be a good idea for you to return to work. After three weeks of treatment your blood counts will most likely take a dive (it's called nadir) and stay that way for the duration of treatment and some weeks after. Being around sick people is really not a good idea. You may very well pick up something that your body's defenses won't be able to ward off.

Dog Girl
Posts: 100
Joined: Sep 2010

Kirby,

This is just my opinion, but I think women may have a worst time with anal cancer treatment (or at least a double dose of issues of radiation issues/burns) as we have two mucous canals; anal and vaginal, so hopefully your experience may not be as bad as some. I was able to work full time the first week and didn't find being hooked up to my port a major issues. I used a backpack type pocketbook to carry around my pump, but you could do the same thing with a regular backpack. In fact I would set it on a stool outside of my shower and just keep my back to the spray to take a shower. (You can tape a piece of ziploc bag over the port in an additional effort to keep it dry.) My boss forced me out of work the second week, but I think I could have worked for another 1-2 weeks before the fatigue and the need to go commando and bathroom issues would have forced me out. Depending upon the size of the company for which you work, (and if you are in the USA) you may qualify for FMLA. That guarantees that your company will keep your job (or a comparable one) open for you for up to 12 weeks within within a rolling 12 month period. They don't have to pay you as that is up to each individual company (I work for a large company so I was able to go on temporary disability), but my company also let me use FMLA by the hour/day. My radiation was at 1:30, so at least for one week I could take a couple of hours off (mainly for transit time to/from the clinic) and didn't have to burn a complete 8 hour day. As you've gathered, everyone is different. I just know that it is very few of us that have none or all of the side effects, but most of us have at least some of them to varying degrees. Good luck and take care of yourself. I know most of us need jobs (for insurance if nothing else!), but there are other jobs, and this is your only life (at least on this earth! :) ), so take care of yourself and listen to your body. It will tell you what you need.

horsepad's picture
horsepad
Posts: 87
Joined: Apr 2012

Caphosol was the only thing that helped with mouthsores. I had radiation first thing in the morning, same time everyday. Sitting did not become difficult until about the 4th week of radiation but lasted until 3 weeks after radiation. I found using a soft rubber intertube I bought at a store that supplies medical equipment the only way I could sit. I took my intertube everywhere I went. I also had problems getting to the bathroom because of loose bowels and no muscle control. I also had dehydration, low blood counts, etc. Drinking alot of water and protein bars, protein shakes helped. I also began the medication for mouth sores a few days before my second round of chemo and also chewed ice during the treatment hooking my chemo pump to my port. It reduced the number of mouth sores I got. Using a straw to drink also helped with the mouth sores. I found sitz baths with baking soda in water were soothing. Best wishes to you.

Angela_K
Posts: 374
Joined: Jan 2011

Your question:

Do you think I can have radiation in the morning, go to work and function?

My answer:

It totally depends on a number of factors, including but not limited to, how your body reacts to the radiation, the daily dosage of the radiation and length of treatment. I push myself, too, but I know that I could not have worked AT ALL after 4 weeks into 6 weeks of treatment and about a week and a half following treatment, unless my work had a "clothing optional" policy. I think it's also important to remember that with cancer, your immune system is compromised to begin with, when adding chemo and radiation to the mix, it further weakens the immune system. Rest and good nutrition are so important in the recovery and healing process.

(You may have noticed that I didn't really address the chemo. It was a breeze for me compared to the radiation. A tiny bit of nausea, some fatigue and significant hair loss.)

My best advice? Take one day at a time and see that glass as half full. Blessings to you.
Angela

kirby77
Posts: 48
Joined: Jul 2012

I posted fearful that I would not be able to return to work after starting treatment. The Monday following my post, I started to pass large bloody clots my Hemoglobin went from pre-op of 17 to 10, I had surgery to ligate the bleed.
Afterwhich, I had urinary retention, they wanted to place a catheter, I refused, and sat in the tub for another 3 days to urinate, and then in a sitz bath for a few days, finally able to void.

I decided to go on leave of absence, but I am worried, because I have only been on the job for 10 months, I am concerned that my job will not be protected. This past week demonstrated that trying to manage your health and have complications come up change everything.

Thanks to horsepad,Randy, Angela,DogGirl,Sephie, Vette,RDS,MxPerry, Cheyenne, MP 3 and Rose for your supportive and individual posting on your experience.

I meet with the medical oncologist today, I met with Radiation Onc last week, I am not sure when it will be safe to start both treatments, considering my bleed.

Today, I am up, feel fatigued, depressed and lack a real motivation to proceed. I am inspired by the quotation "weeks for years".

Now being between surgery and starting treatment and feeling like I can get out of bed for a short time. But I am bored, and I have only been away from work for two weeks.

Fearful about getting started, staying motivated and being hopeful.

K.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

Oh man, that stinks. Do you know what caused the bleeding? I can see why you're feeling fatigued and depressed, but hang on because this thing can (and will) be beat. Please let us know what happens.

kirby77
Posts: 48
Joined: Jul 2012

Thank you Rose, I am recovering from the bleed, right now I am leaving for my first medical oncology appointment. Wish me luck:) I so appreciate your supportive responses.

kirby77
Posts: 48
Joined: Jul 2012

Thank you Rose, I am recovering from the bleed, right now I am leaving for my first medical oncology appointment. Wish me luck:) I so appreciate your supportive responses.

RoseC's picture
RoseC
Posts: 513
Joined: Jun 2011

We'll be here to answer any questions you may have.
Weeks for years.

mxperry220
Posts: 369
Joined: Mar 2011

I had 2/3 of my tumor surgically removed. Then I had the standard radiation and chemo after surgery. For me the surgery was the most painful but it only lasted about one week if my memory is correct. I had trouble going up and down the stairs as my home is two story with all bedrooms upstairs. I stayed in bed mostly during this time. I did not have severe reaction to radiation or chemo. After week 4 of radiation I did have some minor burning like a severe sunburn with no blisters. My groin area and anus was "sunburned". Iused Aquaphor and found this to be the best ointment for me. You can get this at the grocery store, Target, Walmart.

Cheyenne's picture
Cheyenne
Posts: 76
Joined: Apr 2012

That was my experience exactly. The surgery required more recovery than the treatment. I think I was only in bed for two days and I didn't have trouble going up and down the stairs but I remember spending a lot of time in the bathtub and sitting up on one hip. During and after radiation treatment, Aquaphor was a godsend for me! I couldn't do the silvadene (I think that's what it is called) because I'm allergic to sulpha drugs but the Aquaphor and Advil worked for me.

ltruchsess
Posts: 2
Joined: Apr 2012

Hi, my name is Lauren and am proud to say that I am 4 months out from completing my treatment and am now deemed cancer free. This diagnosis threw me for a loop and I know exactly how you are feeling. I worked pretty much the entire time...working is what kept me alive in my opinion. You need to be strong, possitive and push through. My treatment was the classic Chemo (5fu) and 30 days of radiation. Gosh, I would love to give you my phone # to share with you what my journey was. Crazy but I survived and you will too.

kirby77
Posts: 48
Joined: Jul 2012

Hello Lauren

I am getting ready to see the med onc in a few minutes. I think I know what you mean about working, but also fearful about starting and stopping. I manage a big group and having me in one day and off the next would be difficult. I have someone that will take over for me in an interim role and feel he would be better accomplish our projects without me. But it does leave me feeling helpless.
I am definitely thrown for a loop, and not at all able to think positively at this time.

I am so grateful that you would share your journey with me and and also very happy to hear of your "cancer free" status. Thank you so very much for your words of encouragement. I am not sure, how we could proceed with a conversation. I will friend you on this site.

mxperry220
Posts: 369
Joined: Mar 2011

Maybe your company could set you up to work from home if you are up to it. Maybe you could work via internet to some extent partenering with your temporary replacement.
Mike

kirby77
Posts: 48
Joined: Jul 2012

I am employed as a manager, meaning that the face to face time is necessary to accomplish unit and team goals. Very few aspects of my job would translate to telecommutting.

After reading the comments of the many, I decided that focusing on treatment and recovery are also important goals. While my identity is associated with working and being productive, it's also about being able to perform at 100%.

Right now, I have to say I am too fearful of taking both work and treatment on. I guess that's where I am for now.

Monday, I couldn't get out of bed, today, I am up for most of the day. I only look forward to night for the escape of sleep and to deny that's this is happening.

Yesterdays fist medical oncology appointment went ok, they reviewed my CT of chest,pelvis and abdomen, apparently I have 8mm pelvic lymph nodes and a stenosis of my colon. Which they now want to perform at colonoscopy. I just want to get on with the show "radiation and chemo". Everything is moving way to slow for me, each step of the way requires approval on approval. I am only at the beginning but I want my life back now, not after it's approved.

Thank you everyone for your support and response to my rambling.

kirby77
Posts: 48
Joined: Jul 2012

I am employed as a manager, meaning that the face to face time is necessary to accomplish unit and team goals. Very few aspects of my job would translate to telecommutting.

After reading the comments of the many, I decided that focusing on treatment and recovery are also important goals. While my identity is associated with working and being productive, it's also about being able to perform at 100%.

Right now, I have to say I am too fearful of taking both work and treatment on. I guess that's where I am for now.

Monday, I couldn't get out of bed, today, I am up for most of the day. I only look forward to night for the escape of sleep and to deny that's this is happening.

Yesterdays fist medical oncology appointment went ok, they reviewed my CT of chest,pelvis and abdomen, apparently I have 8mm pelvic lymph nodes and a stenosis of my colon. Which they now want to perform at colonoscopy. I just want to get on with the show "radiation and chemo". Everything is moving way to slow for me, each step of the way requires approval on approval. I am only at the beginning but I want my life back now, not after it's approved.

Thank you everyone for your support and response to my rambling.

mxperry220
Posts: 369
Joined: Mar 2011

For me the testing and waiting for results was the worst part. My stress level was at an all time high. I did not sleep hardly any for two solid weeks prior to starting treatments. Once the treatments started I treated each day as my job. My stress level decreased 75% once treatments started. I understand about putting health before work. You probably do not need to focus on anything but making it through the treatment process. You do not need any other stress other than focusing on your treatments.
Mike

kirby77
Posts: 48
Joined: Jul 2012

I appreciate the advice, and for acknowledging the waiting. All the consults and testing feel like a part time job, each taking hours of each day. I realize radiation, oncology appointments, labs, and chemotherapy are all time consuming. I am not sure how most combine it with working and the routines of life.

I just walked with my partner and dog for three blocks the first time in the past 2&1/2 weeks, it felt so good. I noticed that I am starting to get some symptoms of plantar fascitis from being off my feet all this time. I need to stretch and move or it will progress.

That's been my day(job) for today.

mp327's picture
mp327
Posts: 3104
Joined: Jan 2010

We have all been in wait mode as you are now. I was diagnosed on June 18, 2008 and didn't start treatment until about 6 weeks later. Those were the longest 6 weeks of my life! I now realize that the doctors have to get all the necessary tests and scans before coming up with a treatment plan. That being said, it's still hard to wait! I also felt that until treatment began, I was doing nothing to fight the cancer and it was gaining ground. I hope you'll be able to begin your treatment soon. At that point, you will feel like you are finally doing something to get rid of the beast! Hang in there!

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I did Tai Chi and Chi Gong almost every day throughout treatments, etc. But I still had lots of trouble with my feet. I walked our dog most days. It is passing. The treatment poisoned us. My feet yelled at me mightily about that. I only have foot pain now when I travel, particularly airline travel. It is so much better now a year later. Hang in there.
Sandy

sandysp's picture
sandysp
Posts: 852
Joined: May 2011

I was told no one is exactly the same with this treatment. I have returned to one of my jobs and could have done it up until about the fourth or fifth week of treatment, but weeks 6-9 I don't think I could have done it. My other job, which is really draining, is still waiting for my return (it's 100% commission). I have a few days when I can visualize myself doing it now. It is a very draining job and once I commit, I am committed 24-7 for about six months or more although not like 9-5, but just like I need to be on top of things all the time.

I have had trouble with blood counts, but not everyone has this side affect. I also live in the nyc area and have a problem with my immune response to ozone and particulates, not to mention pollens, so I tend to get sick and have to go on prednisone which I like to avoid at all costs, if possible. I am married and we have been able to get by on one income, so I have been lucky to be able to stay in when the levels are "unhealthy for sensitive types", which I can observe first by my immune response and then by checking levels on Weather.com which keeps me from feeling like I have gone crazy or something since I can go from feeling well to feeling sick so quickly. Do you ever experience this phenomena? Keep hanging in there and posting with us. All the best, Sandy

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