Life after Cancer .. trying to figure it all out

janderson1964

I understand how you are

I understand how you are feeling. I have heard way too many times that I should be thankful for surving mCRC so long (9 1/2 years). I am thankful, I don't need anyone to tell me that

Trubrit

Hair today gone tomorrow

One of my former patients came in yesterday. He asked me what I had been doing these past three years, so I told him I'd been doing the 'Cancer thing'. 

'Oh!', he said. 'You look good. You've got hair'

Bless him! 

I don't get too bothered by what people say, but one thing that does rattle my chain, is when people say that that I'm not well or that I'm sick. Truth be told, I'm as healthy as an Ox right now. I suffer from some side-effects, but I'm definitely not sick or unwell. I have to correct them when they say that. 

Sue - Trubrit

hippiechicks

Trubrit said:

Hair today gone tomorrow

One of my former patients came in yesterday. He asked me what I had been doing these past three years, so I told him I'd been doing the 'Cancer thing'. 

'Oh!', he said. 'You look good. You've got hair'

Bless him! 

I don't get too bothered by what people say, but one thing that does rattle my chain, is when people say that that I'm not well or that I'm sick. Truth be told, I'm as healthy as an Ox right now. I suffer from some side-effects, but I'm definitely not sick or unwell. I have to correct them when they say that. 

Sue - Trubrit

Oh my gosh! That hair thing! 

Oh my gosh! That hair thing!  I just remembered how angry I used to get during treatment, or when letting my friends know I was about to enter treatment and may not be as social in the upcomming months, they always assumed I would be losing my hair completely.  When I told them I would not be that maybe it would just thin out some .. they would say comments like "oh, you are so lucky, I knew so and so who had it really rough ... they lost all their hair! Yea, really bad chemo!"

I really could not deal with those comments.  I would explain it had only to do with the drug.  It meant nothing on "how sick you felt" .. that I knew people who would go in for a one hour or one half hour treatment with no ill side affects, just lost their hair ... does losing hair make THAT worse than 6 hours in an infusion chair.  Not being able to stand, walk, see or think clearly? Vomiting, diarreah, not being able to touch, breath or eat anything cold? Having nulasta shots because counts are so low? Petechiae all over ones legs from standing? The countless other issues caused ... oh yea, I had the GOOD chemo! I am so lucky!

I have a very dear friend, whom I love, and has been extremely supportive of me.  We went away for a girls weekend .. and she tells me she told someone she HAD to go away with me because I was so ill with stage IV cancer! I was NED!!! I was so so angry .. I had to tell her .. Please do not USE my illness as an excuse to get out of something, get better seating or parking, get a sympathy look in the restaurant or anything else ... you need to be telling them this is my best friend, and we are celebrating life because she is doing so good, if you really need to be saying anything at all! I had to explain I worked very hard to get NED and I am proud to be there, so please do not make me worse than I am today .. because that day may come all to soon. 

When I need to say things like this to family, friends, co-workers and community members, it gets exhausting and old. 

I am a survivor .. not anything else.

I have seen things I care not to have seen, I know far too much, I really really do not feel like listening to things like this 90% of the time. I want to enjoy my time with family and friends .. not listen to this.

MAliceR

The timing of your post and all the responses is amazing

This thread is so timely. I had my cancer counseling session this morning. The topic of the 50 minutes was pretty much what we usually talk about, dealing with the what now, letting go and trying to find where I fit in life now.  You see, I am 8 months out from my last chemo. As far as anyone knows right now I am cancer free. But I can't trust that, I live every day waiting for the other shoe to fall. I had a recurrence of a UTI this past week and it threw me into a panic. I can't help but freak out that it is cancer again. I am afraid to use the term survivor, I am afraid I will jinx everything. In my head I still feel like a patient. not a survivor. I have been diagnosed with cancer twice. One major stage 3 diagnosis and the 2nd a small recurrence, but a recurrence all the same, resulting in major surgery and 6 months of agressive chemo.  So I am having a hard time moving forward. I am fortunate to have health insurence that covers unlimited cancer counseling as long as my oncologist says I need it. She is very supportive of counseling. I am making an effort to figure it all out, but it is a slow process. Usually one step forward, two steps back. I find as time goes along, no one wants to listen anymore. In their mind, life goes on and they see me looking "normal" so can't understand why I haven't moved on. We all know it isn't that easy. Sometimes I think the post treatment return to life is harder then getting through the treatment. It is like being in a free flight with no parachute. There is sure to be a landing but you can't be sure whether when you land you will survive the impact. Every day I wake up and tell myself I am blessed for the day I have been given and I will stay positive and make something of it. Some days I do pretty well, some days not so well at all, but I keep trying. I hope one day, it will begin to happen without so much effort. My counselor and my Dr keep reminding me that in the scope of cancer recovery I am in really early days yet and to give myself some slack. I am working on it. My inability to let go and put it behind me keeps me from trusting in a future and making decisions. I can't move forward to have my port removed as my oncologist advises, I can't plan anything until I have the next tests, for fear something will go wrong. It is becoming a way of life. But I am working on it. one baby step one at a time. 

Thanks everyone who shares here. Even if it isn't always upbeat and positive, it helps so much to realize that I am not alone in my journey. I am not broken, just struggling like everyone whose been impacted by a cancer diagnosis. I am sorry any of us have had to become a member of the cancer club, but I am sure glad if we have to be, there is a place to listen, share and be heard. 

Blessings,

Malice