Was any one able to work during treatment?

Hi Deb,

I’m sure no two experiences through chemo-radiation are exactly the same, but I can share mine, and I’m sure others will chime in with theirs.  I received an infusion of cisplatin on Mondays, then at the end of the infusion, the nurse would hook me up via my port to a pouch that infused 5-FU over the course of 5 days.  I’d be disconnected from the pouch on Fridays after my radiation session.  On Wednesdays, I’d typically feel very tired, but I could do what needed doing.  Overall, I was surprised at how *normal* I felt…I expected worse, and it’s possible that I expected SO MUCH WORSE that it was surprising to feel okay most of the time.  I feel very fortunate that I was able to maintain most normal activities.  I don’t work out of the home, but I was able to grocery shop, cook, exercise (I even went running regularly while wearing my chemo pouch and did a couple of kickboxing classes with my pouch), enjoy time with husband and kids, and in general, I think most people who didn’t see the chemo pouch wouldn’t have known I was in treatment.  Toward the last couple of weeks of radiation and for the first couple of weeks after radiation ended, I preferred to stay near a bathroom, particularly in the morning, but I only required an anti-diarrhea pill once.  Pain was manageable with over the counter creams and coconut oil.  I worked hard to maintain weight, but in the end, I’d lost 14 pounds from pre-treatment weight.

A consideration, though—because I initially had spread to the liver, I received systemic chemo for 3 months before I began chemo-radiation.  The systemic chemo not only stopped the spread and wrecked any loose cancer cells, but also CONSIDERABLY diminished the primary tumor in the anal canal before I ever even started the 6 weeks of chemo-radiation.  Thus, my radiation oncologist was able to give me a lower dose of radiation.

I finished chemo-radiation in late January, had a curative liver surgery in early March, and was declared NED in April.  I have gained the weight back, I teach ballet regularly, I run almost 3 miles a day, volunteer at the kids’ school, and in general, am thriving and feeling very much just like myself again.  I have a great sense of momentum, profound gratitude, and feel so happy to be amidst a wonderful life after cancer.

I check-in with my team this coming week to see that I stay that way.  This cancer is very treatable, and even very curable, and the research and medical developments move faster than the updates online, so if you find that you are indeed on the cancer treatment path (and we’ll HOPE you aren’t!), have faith…you may be surprised that you will feel better than expected.  I will send good wishes your way.

Take care,

Red

Thank you, Red!  Really helpful to hear all that. So glad to hear you are doing so well!    With gratitude!  Deb

i felt fine all through treatment. i felt like i could have gone to work but was at hospital weekdays, i could have worked weekends but used them for going out, walking etc.hanging around waiting to go to hospital would have been boring but i have plenty of hobbies to do at hime so caught up on them.if you work from home it might give you something to do x

Hi Deb, so sorry that you're probably joining this club that no one wants to belong to, but glad you've found this forum! 

I myself took off from my very small part time job during and after treatment. I went in with the assumption that I'd be okay and it wouldn't be too bad, but I didn't want to disrupt the others at the tiny shop where I work in case I couldn't cover my shifts, and indeed, it turned out to be the right decision. I got around okay the first couple of weeks, more trouble the next, and then was pretty much down for the count for the rest of the treatment and several weeks thereafter. 

Told the manager to replace me, but she said that having me around even in a decreased capacity was better than not having me, for which I was grateful. I did do a little work from home when I felt up to it but it was good not to have anyone expecting much of me.

They hit most of us REALLY hard with treatments and I'm grateful for it, difficult as it was. This cancer is beatable and I wanted everything thrown at it. I think the 20% is largely secondary cancers, which I can't even bear to think about. 

Some people sail through the treatment with minimal discomfort and my wish for you is that you're one of them!

Suz

You’re welcome, DebButterflies,

I know that’s not very helpful for actual planning with your employer, but it hopefully gives you a peek at the very broad spectrum of reactions to this treatment.

I think what Suz/ridetbred mentioned about giving her employer a heads-up and making decisions about work along the way would be a great way to manage work commitments, if that’s a possibility for you.  Also, I loved that Suz said it was “good to not have anyone expecting much of me”—that was very much how I moved through treatments.  I told myself that on days when I felt like I could do normal things, I got going on those normal things! BUT, everyone knew that was not to simply be expected, and that took a lot of pressure off of me.  I had the freedom to buckle down and care for myself.  I wish the same feeling for you (but mostly I wish your biopsy shows no cancer!!).

Take care,

Red

Thanks for sharing your experience SVH.   Really appreciate it!

Thanks so much Suz.  I appreciate it.  I realize I’m getting ahead of myself.  Have always been a planner so trying to look over the map of what may be coming.   I’m grateful to get some sense of the landscape.  

Thanks.  I do think work will be able to offer flexibility. Like Suz, I want to minimize the impact on my team as bet I can. And thank you for your hopes.  I’m with you on all of that!  

Hi Deb,

Looks like you have gotten some good advice here. Just to add, I was really fatigued during the last couple of weeks of treatment and the worst week for me as far as pain and side effects was the week following treatment so you may want to take that into consideration as you plan your time off. I ended up just going on medical leave so I wouldn't have to worry about trying to make my work deadlines. As far as the statistics, I have learned that I cannot focus on those. They trigger a lot of fear for me. My oncologist also told me that statistics are really hard to go bye since cancer is a unique disease to each person. I hope this helps and I'm keeping you in my thoughts!!

Hopie

hi Red, so pleased to hear that you are doing well. i am 3 months post chemo-radiation therapy :5 weeks plus 2 weeks of continued radiation effects. i was more or less ok until the about the fourth week and without family support i am not sure i would have managed the last week and a half of treatment, which along with the 2 weeks post treatment was really grim. however, if you are reading this Deb, the cancerous lump was at least stage 2 possibly 3 and the treatment period short and severe compared to Red's, as no preliminary chemo. 

basically the stats give us a rough idea, but if you have treatment without a stoma, the effect on the area surrounding the cancer can be severe, but that severity will depend on your body and its resilience and the severity of the treatment.

i am much older than you guys, 75, but prior to treatment walked 5-10 kilometres a day (i have hiked quite a lot and live in the country), helped out on my daughter's small holding and looked after my own garden and allotment. i have found exercise when i could helped and is still helping. but my digestive system is really unhappy and this restricts what i dare eat, what i can do and where i can go. i am off all medication as i am hoping to manage things by diet and exercise. i am walking again, but not further than 4k in one go.

Red, did you sail through all this with no digestive problems, or did you have them for a while? if so for how long?

in any event, Deb, i hope things go well - hopefully not cancer, but if it is discuss the work thing with your oncologist and family, they will help. and Red, well done and keep up the good work, ballet classes and running sound great!

all the very best to you both,

ffion.