Friday, 2 October 2009

LIVESTRONG post – cancer – it's effects on my life

SupportingLLivestrong I promised my friend POD I would do a special post for LIVESTRONG day. And this is it. To be fair, it's a post that has been brewing and evolving [that means writing and then deleting to avoid the risk of sounding self pitying and grating – oh, and to avoid abusing people that piss me off!], as I have been having a 'cancer brain' type of week. Very irritating, as I have been obsessing about dying of this stupid, repulsive and repugnant disease. Hmm. Stupid. And a waste of time. But, hey ho, one year out of chemo, it seems this is normal. OOOO – goody!! I am normal! woop woop. Not.

Imagine this. A person sitting with their face in their hands. Crying. Bent over the keyboard, just trying to see the 'x'. That is me. Trying to remember when I was diagnosed. Chemo brain does that to you. It can be really crushing. I suppose it was the 30th January really – sound scan, you have a malignant mass. Thanks.

Anyway, back to the post – it is supposed to be about how cancer has affected my life. Well. No brainer there. Get cancer, life changes radically. Values change. Friends change. Thoughts change. Long term plans change. The resentment is unbelievable - once you've had cancer YOURSELF, life is totally different. It almost seems like we ought to be able to just have a holiday.  Take a long break. But of course we can't. We [like everyone else] have to work. We have to pay bills. We have to deal with everyday ins and outs. But it's hard, as we feel like our lives are short, and WHY should we have to bother with these things??

In the meantime, back at the ranch, I have a lot of confusions. Actually, since I had cancer, my life seems filled with confusing things that were never there before – maybe because before I had cancer I didn't dwell on thoughts of death or how I might die? I certainly didn't envisage a long and painful, undignified death.  I AVOIDED that. And I think I was right to. Why dwell on things that haven't happened to you? No reason at all.

Reasons for cancer brain week; reading [I can't sing, so I just read the words] hymns reminded me of death quite a lot. Plus one woman I talk to is obsessed with the fact that ovarian cancer is the ONE cancer that always comes back. This has made me think too much. What if it comes back? What if it tries to kill me? What if it DOES kill me?  What? Blah blah – what about Aj, I don't want to leave him alone - what about this that and the other? It's scary.

I haven't even CONSIDERED where I will be buried / thrown etc. But I must.

And I confuse myself further by feeling totally positive it won't come back one minute, then by thinking it already HAS the next. Aaargh!  I am reading Lance Armstrong's book 'It's not about the bike'. He went through this exact same thing. Once you are no longer doing something [like chemo] to kill the cancer, you seem to be at a loss. No action. Just wait and see if it recurs. The first year of remission is so complicated. And it's disturbing to have a mind that swings back and forth between one extreme and the other. This first year is chronic - a low grade terror infests your mind constantly, as the chance of recurrence is highest then.

And, this is the other confusion – should I keep talking to other women who have had OC? Am I simply wallowing in my own misery? Am I dragging it out? Two people [they do not have cancer] have both said that if I keep talking to women who have had the same thing as me, I shall never 'Get Over' my cancer [get over it? hahahaha – is that even a remote possibility??]. Neither of them were being mean – they were trying to help me. But I am frightened of being alone with my cancer. So now I don't know what to do.

Today I was told I am 'obsessed'. What?? Of course I am obsessed, obsessed with making sure other women know about ovarian cancer. Obsessed with spreading the word. Yes. But generally obsessed? no. I don't think so.

The group of women I am involved with are fantastic – we all understand one another, as we've all had the same thing – Ovarian Cancer [apart from one friend – she had cancer of a different type]. We swap tales, we swap knowledge. But, we talk about recipes and garden plants, children and hopes and dreams – sex and the lack of it, work, hair colour [of course! now that we HAVE hair]. We do not OBSESS about cancer. But right now, one of us is dying. And I understand that. It is a warning of the 'worst case' scenario. But, for others, it may seem I am dwelling on things I don't need to. But I dwell on those things anyway. Better to know the facts or live in blissful ignorance? I think the former.

It is a constant in my mind…the pain I have in my side – is it the cancer come back? Is it an adhesion [please let it be an adhesion!]. WHAT IS IT???!!! And the people I can talk to about this are the women who have the same thing. The women who are also sitting awake at night, wondering what the hell is going on in their bodies – the women who also have the exact same pain that I have. Why, why would I want to cut my connection with these women?? How would it help me to pretend I didn't have cancer? How would it help me to pretend I am a normal person who doesn't have to think they may die within five years. How would it help me to be alone with my thoughts? I don't think it would. It's not the same as 'knowing someone who has cancer' – THAT you can get away from, cosily in front of the fire, you can forget about them – not cruelly, but it's human nature to try to concentrate on the good things, which is what I always did. Before I had cancer.

So. Would it help me to be alone with my thoughts? I think not. I actually think I might go mad. I am not sure I will ever 'Get Over' my cancer. How depressing. Get over it?? Give me a break – it's always there like a childhood monster in the cupboard – but this time it's real.

So now I do know what to do. For now.


  1. Yes, it's real and I believe that even if we turned off all things cancer we would still live it day in and day out. It's apart of who we are, but I totally understand your internal and sometimes external conflict. It's scary, we are a reflection of each other... when I look at you, I see me and that my friend is a hard dose of reality...on the best of days I'm so much happier with all of my OVCA buddies...on the worst of days I wish I never heard the word:) xoxo

  2. Thank goodness for each day that we are not dying, huh? Your multicomments crack me up.
    Tell your folks to leave a comment and I will send them a gift if I draw their name out of the chemo-hat.

    I got 4 hours of sleep! Whose idea is this!?

  3. I'm sure your friends who think you should stop talking to other women with cancer must mean well, but--seriously? Why on earth would you want to cut yourself off from such a tremendous source of support? And how could people who don't have cancer themselves possibly know what might help you get through the fear and mental cloudiness and all the rest?

    I never thought of how the remission stage could be almost as bad as the yucky treatment stages because of the fear involved.

    Thanks so much for sharing your story!

  4. POD, it WAS your idea - and a great one! You can sleep later ;o)

    Crabby - you're right, they mean well; I may have advised the same thing before I had cancer - I was a right 'head in the sand' with regard to [eek don't mention that word!] cancer...but I know I need my girls ;o) They're the only ones who 'get' some of my crazy behaviour!

    Love your blog by the way

  5. I'm right there with you Sandhy. I love this post, and the roller coaster of emotions that I went on while I was reading it.

    Us other women with cancer would understand if you wanted a break - but we would also miss your humor, concern and valuable insight.

    Don't even get me started about chemo brain! My loss of mental function is probably the worst side effect I could have had.

    I hope you feel better next week. Sometimes we need to wallow, and I think it is good for us in small doses.

    Big cyberhugs!!

  6. This was a beautifully written post! Thanks for sharing what you go through after the initial treatments. Like Crabby, I had not given much thought to the fear involved in the remission stage...

    And I totally "get" why you would need the support of other women who are going through the same thing. Especially from POD. 'Cause she's special. (crazy, but special!!) :)

    Oh, and thanks for posting the link to my blog in POD's comment section! Some of us occasionally suffer from chemo brain even when we haven't HAD chemo! (I blame it on menopause....the hot flashes seem to have fried some seriously important connections in my brain!)

  7. great post! I think (or at least hope) that sometimes people who are uncomfortable with the topic mention that you need to 'get over X'. I have friends who tell me this about my mom's death. They tell me it's time to move on, etc. I have to hold back from slapping them, but that's a whole different story!

    thank you for sharing your story and promoting awareness today!

  8. I can imagine - I went through a 'slapping people' stage too - now I understand that they are trying to help, and I appreciate it, but ignore them ;o) You do the same - you'll never get over it, you just get used to it.

    Just nipping over to see how you're doing in the post department! :o)

  9. Yep-have been here for certain and I think it is an inevitable part of the process of coming to terms with how fragile, brittle and frightening life can be. When you get cancer you stare into the abyss. But I have gradually come to terms with it and feel less daunted about life these days. For me it was less about me dying, and more about what and who I was leaving behind. Frightened by how I would die, but not about actually dying itself. It all has to be sorted out in your head, and it can be lonely. No- it IS lonely.
    Without my faith and my family I don't think I would still have my mental health to be honest. With their love and support, I am stronger for going through it now despite all the darkness.
    Hugs X

  10. Ovarian cancer doesn't always come back.

    I'm not planning on mine coming back but talking to other women who've been through OC as well is enormously supportive and helpful. Noone else reqally understands what you've been through - and are still going through - do they?

  11. I'm not planning on mine coming back either!! And no, I don't think they can understand entirely, no matter *how* hard they try. And people really do try. But it's not the same when it's someone else. I think the main problem being people who haven't had it think you're better once you look ok again. They can't see what's going on inside [thanks goodness!].

    I'm very grateful I've met all of you! :o)


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