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How to announce my condition to others and deal with work

truckingalong
Posts: 444
Joined: Aug 2010

Hey, I finally got meet with the onc - I have stage IV Cluster B Hodgkins, have something outside my lungs and in my right pelvis and tailbone so will have bone marrow to check that out. Nevertheless, I will start chemo in 2 weeks. Will have shunt planted next Wed. Now I wonder - how to tell co-workers (already told my supervisor who is cool about it)and my clients and what to expect - will I have enough energy to work through treatments? How much and what kind of help will I need? Would like to hear how you all manage this.

Thanks so much
Liz

forme's picture
forme
Posts: 1162
Joined: Aug 2010

Hi Liz,
I am also struggling with how to tell people, some know but my adult daughters do not. That is my big struggle. I think that I will gather them together after my Pet/ct on Tues. I am sure they will have fear and shock, but I believe that keeping it from them would only hurt them more. The people I have told are really being wonderful. I think you will find that people want to support you in any way they can.

truckingalong
Posts: 444
Joined: Aug 2010

Really appreciate your feedback. Yes, I just sat down with my kids and blurted out what I have - feels like I did not do this tactfully but kids surprised me by being calm and asked questions and then they promise they ll root for me during hard times. I became more comfortable talking about it and feel fortunate for their understanding and support. They are in college. I am starting to tell friends - one by one - they re supportive.
It is the work that I am concerned with - how to be "strong" at work, do a good job, etc.

Thanks,
Liz

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

Hi Liz, I also have stage 4 B Cell, my cancer is in my left pelvic area, lower back, chest, which is gone from treatments, and in my sciatica. I tried working for a week after treatment and could not do it.I caught a fever that almost put me in the hospital. What happens with this treatment, is your white blood counts get taken down to low level's,your body uses them to help fight infection. It's weird with this type of treatment, there are days when you really feel pretty good, and you feel like, hey I can be working, but they are short lived. You manage this by listening to your body, take naps when you feel worn out, don't do to much, it will be over before you know it. Stay positive!!!!!! Good luck Vinny

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Vinny - wow, I believe more what I have after I hear you and other's comments sharing similiar diagnosis and issues and feel uplifted with hope. I am taking it all in, you know. Yeah, once I know about my results, I found myself being aware of my body and what they are doing. It is like mind and body talk. I have been taking yoga on Fridays and find that I am slightly weaker every week because I keep losing weight - now at 99 lbs. I am anxious to stay strong. On bad days, I felt rush in my body and get fatigued. Now I am really trying hard to eat a lot. I just learned that cancer eats my nutrition - wow!

Your experience sounds like I should cut down work a lot during treatments. Do you drive much when you are feeling weak? How comfortable did you ask for help?

Really, I am so eager to start chemo asap to get the ball rolling. I look forward to do hobbies and all that! Yes, it is interesting to see how people react to my news and this brings out the best in them - wanting to be supportive! That is nice.

Liz

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

I really don't think you are going to be able to work during traetments, I hate to say that. You should not put yourself at risk. Unless you are confined to a room by yourself it will be a challenge to work for sure. I had a 35 minute commute and it was tough to stay awake on the road. You should see if your company has the Family Leave Act, it protects your job while you are on Temp. Disability. I drive myself around on my good days, my wife takes me to my treatments and picks me up, they don't want you driving because of all the Meds you recieve..... Vinny

truckingalong
Posts: 444
Joined: Aug 2010

Vinny,

Thanks for saying it - best not to push myself too hard - I feel better hearing that because one person said he worked through treatments - crazy!! I work with many clients so I would not want their germs plus over-do stuff - gotta be careful. The white blood cell low count is new to me so thanks for mentioning it.

Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Hopefully that $10,000 Neulasta shot will prevent the white cell count from dropping.

truckingalong
Posts: 444
Joined: Aug 2010

Thanks for the info. on Neulasta shot - also learned that there is also Neupogen which is given for few days - more softer impact and also cheaper from one source I was looking at.

Liz

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Acupunture will help with your side effects. I also got some chinese herbs called marrow plus and take those. It seems to have kept my blood counts up. I get a treatment twice a week and couldn't function without it. I too lost alot of weight before treatment. Within a few days after my first chemo I felt the tumors shrinking. It is amazing how fast it happens. The steroids will drive you nuts.So be prepared.I know how you feel when it comes to getting the ball rolling I could hardly wait to get mine started, but am dreading the last one. It gets old!

truckingalong
Posts: 444
Joined: Aug 2010

That is good to know. I am concerned because I am quite thin I wonder if I will get infected easily after starting chemo. I get bruised easily, have itchy skin, and now have headaches, bones "clicking" and weaker too. Noticed these symptoms come and go but more often so that is why I can't wait to get treatment on Aug. 30th!! Also, will take education class this Friday so I will ask questions to get more info. Thanks for the helpful tips!
Liz

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Liz,
That is why they have to keep an eye on your white blood cell count. They are the ones that fight infection in your body. That shot they give you right after each round (24 hours) of chemo will help prevent that from happening. It also helps produce other blood cells which are made in your bones. You may experience some hip discomfort a few days after the shot but they tell me that is normal. The blood cells are produced there as well. John

truckingalong
Posts: 444
Joined: Aug 2010

Interesting. Do any of you get sick easily during treatments like catching colds from other people? I am concerned since I work with clients and sometimes they come in with a cold or cough,etc. - even though they know they should not come in sick but many come in anyway with a cold. Oh, I have 2 cats. Now, I would not change kitty litter. Poor hubby - he has to do it!

Liz

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

NO KITTY LITTER....I loved that :) Use lots of hand sanitizer, on shopping carts, doors, don't touch your face when you're out and about. Do your best to stay away from sick people, use good judgement. My hubby bought brown paper towels for our bathroom so that each time I was able to use a clean towel rather than using the same handtowels.

Cars are filthy..you'd be surprised. Cell phones are nasty. If you know you're counts are low invest in face masks. I go to a small office and never had the shots alot of you talk about so can't comment on that, maybe it's something new since I had treatments.

I couldn't have made it without my dogs.........they are my buddies. Just didn't let them kiss me :)

You'll be fine. Tired, but fine.

Take Care,
Beth

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Beth for the tips esp. about the brown paper towels and the good wishes!!

Liz

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

is a problem. I had to watch the clock and eat every 2 hours. Its not a problem now. I keep gaining. Make sure you eat high protein, it will help your body heal.

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Liz,
I also had problems trying to tell people. Problem I encountered was that my supervisor did'nt want me to let others in the shop know. I let him know they would fiqure something out when I show up to work looking like "Uncle Fester". He stood by his guns. Think he was actually more afraid of me then I was of the cx. I played his game, but with my own little twists in it. Made it more fun for me. Hopefully you can still work while being treated. I would usally miss work on treatment day and the day after. Going to work after that was sometime a struggle but made me feel better when I was there. My wife and kids would call my uniform(military), my armor. Even they would notice a change when I would head to work.
Watching out for others is the hardest, Stay clean, watch out for others that are sick. We rearranged our outings so we could avoiod the busiest times out. That was'nt the greatest since I was going through treatment durng the Xmas holidays. Missed out on a bunch that year, but did not get "sick" at all during treatments.
Keep your energy levels up with plenty of rest, moderate exercise if you can and maintaining a good diet. I supplemented food with high protien drinks found in the health food stores. They worked great and I actually gained a few pounds instead of losing.
Find what works best for you. Ask all the questions you can think of CSN is a GREAT resource. Take care, keep in touch.

Dave

truckingalong
Posts: 444
Joined: Aug 2010

Thanks, Dave for your insights. I have not yet talked to HR - human resources dept officer about the expectations when I will return to work (she knows my diagnosis). Hard to tell but now I think I will tell her that I may return to work after 1 round of treatment - see how I manage my energy and be able to work. On the other hand, I work with clients - I do the counseling and hmm, I hope working with clients would not present much of a problem..I guess I have to watch my blood counts, energy level AND watch out for clients' bringing in their colds or illnesses! Yes, miss out holiday get togethers if need to. But I realize everything is a risk so yes, I will rest, stay clean, and eat well and take yoga!

Take care,
Liz

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