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Had 6 cycles of ABVD

Spanishlady
Posts: 7
Joined: Mar 2016

i don't mean to be a Debbie Downer and I am greatful to be in remission but I thought I was going to feel better than this. My last infusion was 21 March and I am feeling pretty down since I am not bouncing back like I thought. I know I need to be patient. can anyone shed light on how long it took after treatment before they started feeling somewhat normal again?

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Dear Spanish lady,

Everyone is different and in my opinion nothing about this is easy even getting our feet on solid ground so to speak.  When I completed seven rounds of Rituxan in 2014, I had no idea at the time how different I was.  I was exhausted, developed shortness of breath, extreme fatigue, low counts up until last week (Hoping that stays up).  I was neutropenic for almost two years.

For me the cumulative effect of the drugs took a toll, slowly and quietly I gained ground.  

Last February I was scheduled for my last treatment, my counts were too low so I didn't do it.  So I decided to workout in the gym for the first time since I was diagnosed.  For my the gym was always a treat but that day it was horrible.

Give yourself a pass, be patient and in that time try to be good to yourself.

Two weeks ago I rejoined the gym after being off for two years, my first day back was not horrible but very doable.

For me somethings took time but I hid my cancer so it was tricky.  I forced myself to perform and not miss a beat.  I pushed myself.  It was hell, that's why I say be good to yourself.  Take this time to love yourself today and who you will be tomorrow.

Blessing, hang in there....

Spanishlady
Posts: 7
Joined: Mar 2016

007,

you are right, patience and "me" time is essential but I feel very sad for not preparing for this portion of my journey. It's strange, when I was first diagnosed I was in shock, so much so, I barely had time to diigest what was happening as I began chemo treatments. After receiving news I had a complete response, I was elated. I thought not bad for only 4 infusions. Little did I know how the next 8 were going to affect me. I feel like I am stuck in quicksand, unable to get out of this extreme sadness. I shouldn't be feeling like this; for God sakes I'm a survivor. oddly enough, i am crying more today than the day I was told I had cancer.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Now you have to process all you went through and accomplished, it's hard.  In some ways is harder.

You will feel better, stronger, sassier.  Just process everything, you owe yourself that much then feel what being a survivor is all about!

It's a roller coaster no doubt, for me I needed to own it, kill it and move on.  I didn't like the alternative or how it felt.

It gets better, life is different but has more meaning.

Hugs

 

 

Max Former Hodg...
Posts: 3699
Joined: May 2012

SpanishLady,

No one need apologize for feeling down after chemo. It is undoubtedly the most reasonable way to feel. Surviving cancer treatment is not a coke commercial.  I always wonder why cancer centers use photos of people who look like they are on the beach at the French Riviera. A little more honesty would be welcome.

No two survivors' experiences are the same, but my experience, and what I hear a lot, is that recovery is slower rather than quicker.  I feel bad most of the time, but it is impossible to know how much of that is from HL, how much is from prostate cancer, how much was from getting run over by a car, and how much is simply a result of aging.

Specific abdv symptoms, like losing hair or sense of taste, tend to return to normal fairly rapidly (two months or less). Energy returns fairly rapidly, but I never regained the energy I had a few years prior to the disease.  I still sleep a.lot, nearly six years later, but as I mentioned, no one can know how much of this is abvd, and how much is not.  Skin and nail discolorations return to normal fairly fast. Neuropathy can go away fast, slow, or never.  Mine is in the last of those, I still have the neuropathy today.

Yet, I would start abvd again today if necessary.  People discuss 'quality of life' a lot, verses treatment. It makes me wonder:  what is the quality of life when you are dead ?  Sort of becomes a moot point.  My only feeling towards chemo is Thanksgiving. Every day that I get up and live life is a day I would not have had otherwise. And I regard all of those days as good.

Eat healthy, be as active as you can, use your mind. Those things will will make recovery fuller and faster than they otherwise would be. But it might not make it fast.

Your recovery is a story yet to be written, being written daily.  I hope it is a pleasant story, better than many. Be mad if you feel mad, cuss this mess you have been through.  Letting that out can probably help also.

max

 

Spanishlady
Posts: 7
Joined: Mar 2016

Thanks for the words of encouragement. I never realized how beneficial talking with others who have walked in my shoes would help me. I am glad to know that I am not alone in this fight; it is refreshing to know that my feelings are shared and accepted by so many others on this site.  I realize my journey is not over, but only the beginning. There will be highs and lows but I will remain strong with a little help from my new friends :)

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