Post chemo blues

[Susie9552]

I finished chemo. My scans are clean, and I'm starting 4-5 weeks of rads Monday. I am happy & grateful. However, everyone (including me, I guess) expects me to pick up where I left off and get going. You know, like I hit a little detour on my road, but I should be getting back on the highway about now. My husband keeps saying, "You're ok now".

I don't feel like it. It's hard to know where I am, but I sure don't feel like myself. I know my old self is gone, & this is a new self, but who's that? I'm not good about exercising, I'm still eating like a pig, I still watch too much TV, and I really feel like I'm in rut.

Anyone experience this? I wrote all sorts of goals in my journal for when I got clean scans. They were small, attainable goals, but - not even a dent in one. What to do, what to do. Not "doing" things has left me with too much time on my hands & too much time in my brain.

Actually, one of my doctors told me that this might happen. I laughed at him never imagining that I'd be anything but ecstatic with the end of chemo & clean scans. This will pass, too, right?

Susie

[Chemopalooza]

Hey Susie -

I just finished chemo June 14th and I'm feeling the same way now too. I had these big plans for being healthy as soon as I stopped feeling crappy from the last chemo - but I find myself eating only so-so, today I ate crappy, and then taking lots of naps and being lazy still. I'm also getting lots of people saying soon I'll be back in shape, and I keep thinking - SOON?! Give me some breathing room! I walked up the hill to my familys summer house today and was sooooo out of breath and soaked with sweat I thought I was going to die! It takes time I guess, that and some education to our friends and family that think we're all better now that chemo is over.

Hang in there, it's gotta be better soon.

[AMD45]

It's been a really long time since I finished ABVD chemo but I remember VERY clearly that being probably the worst, most stressful time for me. I expected to feel great and be ready to get back to my life -- like it was -- and I had even had major lung surgery toward the end of my 6 months (that turned into 8 months because of the surgery) of chemo. What I found was that everyone expected me to be the me before HD. That I was fine, the cancer was gone, and life would start back up like it all had just been a little pause in our lives. I felt like I should have felt that way too but the what I actually felt was tired, not ready to get back into the rat race of work, afraid I wasn't the same person I was before HD, and afraid it would come back -- that it wasn't really gone. (For me that turned out to be true but I'm not the norm, I'm the exception to the rule.)

What I realized was that while I was in treatment, I had a mission: I was doing whatever I needed to do to get rid of HD. I wasn't thinking much about how I "felt." I had my cry/worry about my son growing up without me and possibly dieing and leaving my family the day my doctor told me he thought I had Lymphoma. From the next day forward it was about doing what I had to do so that didn't happen. Well, when treatment was over, I felt lost -- I had finished my mission. I found that post-treatment was the time that counseling was very helpful. It helped me get back on track and to discover what my "new normal" was.

What you're feeling is totally normal and what your family and friends are doing is totally normal too. It's important for them to feel like the nightmare of almost losing you is over. So, my suggestion is now is the time to find a counselor to help you start life again and if you've been seeing a counselor, it might be time to change the focus a little.

[PookiePeck]

Your response is normal. But you will never ever be your old self. Physically, you can recuperate. But psychologically and spiritually, you have been changed. And in my life this was a good change.
I was so focused on getting better that I felt worthless when I finished. It took time to rediscover myself, the new me. Just give it time.

[Susie9552]

Thank you, all. It really is good to know that it's not just me. I think seeing a counselor is a really good idea at this point. I seriously need to change the focus.

Susie

[Chemopalooza]

Yeah I'm planning on going to support groups and possibly seeing a couselor once I'm back from my vacation in a few weeks. I went to the Wellness Community before I left to get familiar with the place since I hadn't been there since February. Thank goodness for this forum, it made it much easier for me to get support without having to leave the house, but I think it would be good to actually meet some folks, so that's the next step

[Susie9552]

Kelly

The Wellness Community has been a real lifeline for me. I go to a support group there once a week. They also have a leukemia/lymphoma network group once a month. Yoga, guided imagery, relaxation, tai chi - the place is awesome!

Susie

[Chemopalooza]

Yeah I went to the monthly lymphoma networking session in February - it was totally random that I found the place and on the same day I heard about it was the monthly meeting. It was great though, the only time I went was when my hair started falling out and I was totally miserable and needed to hear other people talk about it too. Since then I moved in with my family and haven't been near the Wellness Community, but I move back to my place in August, so I'll hopefully start up a routine.

One thing I did find out that was kinda a bummer there - they do the weekly support groups at The Greater Boston Wellness Community - which is traffic hell to get to, and the latest the sessions start is 5:30pm, so that would mean when I'm back at work I would have to leave early once a week to get there - we'll see how that works.

[AMD45]

Kelly, I say remind all the folks at work that they are lucky to have you around and that this is part of your post-treatment care. And besides, it's a little something that you deserve.

[Bekah]

Kel -

Take A-M's advice, and tell them you need to meet a hodge buddy at this support group in the city...ie, Bekah the beautiful baldy.

I'm hoping to sign a lease in Newton by the end of next week with some good friends for a September first move-in date. I can smell the cheap beer, and hear 'sweet caroline...oh oh oh...' from Fenway now.

All my Love,

Bekah