Awhile ago I read this on the Colon Club forum and it really hit home.
“The problem right now is I go through such mixed feelings, and I get lonely because there is not anyone with whom to share them as I know very few people who have had cancer. I am tired of not “feeling” myself. I know things from here on out will never be quite the same. I have battled with this neuropathy for some time now and I battle with work and appointments. I need balance! I do take anti depressants but think talking to others will help me. Others know what it is like, this “lonely” feeling. Note: I am not suicidal and I am happy to be alive. I just need friends like me. Once you finish chemo, it’s like everyone forgets that anything is going on with you? Anyone else share my feelings?”
In fact, I was going to post this last March and then I found out about the recurrence and was suddenly back on chemo. Thing was, even six months after the first chemo I was still feeling not quite myself. I have since come to the conclusion that my pre-cancer self is gone for good. Not necessarily a bad thing, but it takes some getting used to…
You see, after reading what this person said, I thought what I needed to do was to stop thinking that anything would ever feel “normal” again. Or at least that I needed to find my new “normal”. I mean, I do realise that we are always changing, growing, etc, but there is usually a base from which we work. And it feels to me like this base has been whipped out from under me. This past year or so it’s often been hard to know where I stand, where to put my own two feet, especially because my prognosis is so iffy.
I must say that having had two holiday breaks this month – one to Málaga with Nog, the other to Zahara on my own – has really helped me feel like myself again. Getting away from the place where I was sick for so long was very helpful. By the time I came home I no longer felt like a sick person. I was refreshed, happy to see my cats, excited about getting back to work … yet it wasn’t like before I got sick. And I suppose it never will be.
I know the lonely feeling the writer, and many people on the CC forum, have mentioned. Especially the longer the illness and side effects go on. It’s like people run out of patience and sympathy when they see that you aren’t getting better, or that you still need to talk about your fears and other feelings even after you’ve been declared NED (no evidence of disease). This isn’t about dwelling on the negative or wallowing in self-pity, as some seem to think. For me it’s about acknowledging what has happened and trying to rebuild my life, but with a different sort of “foundation”. Because every time I go for a scan I know that, even though I’m feeling fine, everything I’ve been building could come tumbling down again. I need to have at least one small place to put my feet and know where I stand.
Having Stage IV cancer means that my doctors don’t expect me to be cured. They are treating my illness as “chronic” and say that it isn’t a question of if I will have another recurrence, but when and whether it will be treatable. And because I had a bad reaction to the oxiplatin infusions last time round it looks like I won’t be able to take this “first line” treatment again. Meanwhile, since finishing the last chemo in July I have been experiencing quite bad neuropathy in my feet and hands. It feels like I’m walking on blocks of wood and my toes & fingers alternate between feeling numb and having painful pins & needles. This may get better, or it might get worse and not ever go away – nobody can say for sure. This, along with continued digestion problems and still painful post-op scar tissue, are constant reminders of what I have been through and what may happen again. That I am no longer the person I used to be.
In some ways this is good because I feel I’ve experienced a lot of positive personal change & growth since May 2008, when this all started. But I am looking forward to the time, if it comes, when I no longer feel like I’m walking around with a time bomb inside of me. You know, I have never asked “why me?”, probably because there is no practical answer to that. And I am nothing if not practical about things. Which is also why I do not believe that blind hope and positive thinking are going to cure me. For me the path has always been to practice cautious optimism, which I will continue to do. And also, every now and then, I will try people’s patience by writing long rambly blog posts about how I’m feeling and what I’m thinking. It’s all part of taking my life back, one day at a time, and finding my new “normal”.
casa azahar 
Sometimes I think that being ill enough to need treatment that injures you is more like surviving rape than anything else.
To be fair, I have done the first (though not to the extent involved in cancer treatment) but not the second.
But I think that both situations are all about who you can be, no matter what someone else does to you or what boundaries are violated.
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I, for one, can honestly say that you have never tried my patience with a post about your cancer or your fight against it or your battle to find your new ‘normal’. I look forward to reading your blog.
I’ve not had cancer, but I did have a bad depression several years ago and – while I am better now – I have never been the same since.
Not just physical changes (I put on weight and my metabolism slowed due to the anti-depressants), but the feeling of vague but constant watchfulness for a return of symptoms is something I can relate to, albeit from the perspective of a different illness.
As is the acknowledgement that some things are just not possible for the ‘new’ me: I can’t drink alcohol anymore, or caffeine – both of them unbalance my internal chemistry so badly that I’m in danger of plunging back down the hole again. And I can’t stay up late and still get up early – I must have 8 hours sleep. And plenty of daylight.
All of which is to say, I hope you don’t feel so alone when you remember that we’re on your side.
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Bear with me…
Over the last 10-12 years I’ve spent some time in therapy, trying to understand why I was bullied almost to death and how I could cope with the after-effects.
One of the saddest conversations I had was earlier this year (so LOOOONG after everything had stopped) when I realised just how much of my behaviour and personality has been altered by my experiences. The extent was mind-boggling and I felt very upset and sad.
But, see, this is where I think I went wrong in my initial reaction: I assumed that whatever had changed in me and about me had somehow reduced me, reduced my potential. That was the gut reaction, the jump to a conclusion one.
But what if it wasn’t? What if this new me was in fact better equipped to deal with the world and all its foibles?
And what if you are? We will never be the same from our experiences and yes, we have the scars to prove it, in different ways. But the people that do stick with us and the people that are patient are very much worth our time. And the ones that don’t, well, I’d rather know about it now than later when I’m relying on them for something else. And this way you can still be friends, but it might be a more superficial relationship than you had hoped for.
You will still have people to talk to and people that listen. And your new baseline normal is not reduced to what’s left of you post surgeries and chemo, it’s just…well, polished. Glued together slightly differently. But still you where it counts.
I’ll get me coat…
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I wish I could find wise words to say in response to your post – but I can’t.
All I can say is that I think of you daily and wish this journey of yours didn’t have to be so hard for you.
:hugs:
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I’m prepared to read ’em if you need to write ’em!
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Me too. I always find that I learn something and gain some insight from your posts, and that is valuable. Having been a very healthy person all my life, I need to have insight since I have to deal with people who have chronic illnesses on a daily basis.
You have never bored or irritated me.
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I don’t think I have a need to write posts like these, Johnny … it’s more that I want to, just to keep my whole cancer saga honest and up-to-date. I know that more people read here than comment, and on occasion someone with cancer will leave a message saying they were happy to come across my blog. Just keeping all bases covered. And I reckon everyone knows how to skim or go elsewhere if they’re not interested in my ramblings.
Not quite like rape, Sled, because I consented. But yes, very intrusive and awful … which can then lead to feelings of helplessness. Like, okay, I agreed, but I didn’t know it would be this bad! And then not feeling like there is any other option. That really sucks.
Thanks woo & ismarah … *hugs*. I agree that “not being the same as before” can be positive. For me it actually feels more positive than otherwise. Just wish I didn’t have the Sword of Damocles constantly hanging over my head…
Yes, I was also a very healthy person all my life … until I got cancer. You just never know, hmh. I sure didn’t see it coming. Was always strong like ten bears, rarely caught colds, always felt like I had more energy than I knew what to do with. And then one day that all changed. Hell, I didn’t even have any symptoms until the tumour started bursting through the intestinal wall. As a result, I learned what FEELING TIRED actually feels like. As well as a lot of other things I’d rather have not experienced. If reading about it has helped you understand your clients better than that’s great.
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Hello my name is Kelli Schroeter I am 29 yrs old and have colon cancer I love you blog and reading this has helped me know that what I am feeling is normal.
Thank you Kelli
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Hi Kelli, and welcome. It’s not often that I help someone feel normal! 🙂
Have you checked out the Colon Club forum? It was started by two women who were diagnosed when they were quite young, like yourself. You might find it helpful. There are a lot of very fine people there.
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Yes I found it yesterday and so far it has been very helpful, anyhting to you throuhgh the bad days.
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