Lost in Thought…

Wow, it’s been such a long time since I have written anything for this wonderful site and I feel quite bad about it actually, however, it is what it is and I can only continue on and try to be as involved as I would really like to be from now on.  I am honored to be a part of such an inspiring, generous, sharing, educational site.  I consider myself very lucky to be still able to participate when I can.

So, enough about all that, now that I am back I will fill you in on what has been going on in my journey with cancer.  I can tell you it has not been easy in any way, still there have been  blessings along the way which have been most timely.

I think where I left off was around the time I was due to have an operation called a ‘pelvic exenteration’.  Well that didn’t happen.  Oh, I went into hospital alright, even got put under the anesthetic, the surgeons started to do their thing, opened me right up and I mean I am cut from just below the breast bone right down to the pubic bone.  Once they got inside me and could see the tumor and what it was attached to they were shocked.  Apparently it took them over eight hours deliberation on what to do and they decided they couldn’t do anything because all of their options would have risked my life far too much.  So much to their chagrin, they had to just sew me back up and take me up to recovery, where my surgeon was good enough to be there when I awoke to tell me the bad news himself.  I was shocked to say the least.  Devastation came later when I was strong enough to support that emotion.

From that point things went downhill fast.  I was stuck in hospital recovering from a surgery that never needed to happen, I had my CT Scan which was due, I had already had a CT  scan before the surgery at Peter MacCallum so it wasn’t long between drinks so to speak….and in that very short amount of time, the cancer which only approximately 8/9 weeks ago was completely contained within my pelvis which is why this surgery was an option for me in the first place…in that very short amount of time the cancer managed to travel to my lungs, there are 7 tumors that we can see clearly and there are other tiny pinhead type ones!  OMG!!!  I was frightened, I was overwhelmed, I was angry and so hurt, don’t ask me how feeling ‘hurt’ comes into it but it did or rather, does!  I felt as though if you touched me I would bruise that’s how sensitive and sad I felt.  This was when I really, truly felt as though the cancer had won.  I was going to die.  Soon.  Too soon.  My oncologist (who by the way hates giving a prognosis like this and was not exactly forthcoming) told me that I would have anywhere from 6 months to two years.  Two years but no more than two years, no definitely not more than two years!  Two years I think to myself rapidly – Jack will only have just turned 9 – far far too young to lose a mother!  I want somebody to wake me up and tell me this is a horrible tragic dream, please, please tell me that, oh how I wish.

I find myself looking at women who are older than me and thinking why?  Why did you get to live all those years and another woman dies before she even turns 40.  I am not just thinking about me here either, I am thinking why and what makes some people get this awful disease and others don’t.  There are no answers to my question really, you can argue lifestyle versus someone elses but really we all know someone who has smoked all their lives and not gotten lung cancer.  I have met people in the chemo ward who have never smoked, drank, eaten junk, who exercised daily and really took great care of themselves and guess what…yep lung cancer – so you really cannot judge, it seems completely random in who gets it.  Still I do look at people and wonder and I guess I should be really honest and say that I actually envy them.  I am not proud of myself for that but it is the truth about how I feel.  The other day I saw a mature age woman outside her lovely home on a beautiful sunshiny day just trimming her hedge and tidying up her lovely garden and I was oh so envious that it took my breath away.  I just wanted my health back so that I could get out in the garden and play, I want to continue to live in a lovely home with a beautiful garden doing lovely things until I am an old woman.  So you see I have been struggling to accept the fact that I am going to die and I really want to do it graciously and bravely and not look at other folks and feel envious but it is so difficult right now.  Anyhow, enough of the pity party, I don’t want this to be a ‘poor me’ thing that’s not what it’s about, it’s about sharing with you honestly, what is going on in my journey with this cancer.  How it is affecting me and my children, it is taking so much from us and I guess I just don’t know how to accept it !  It has been making me angry but I suppose this is just another stage.  I am sure that these ‘stages’ return often during this journey.  I hope I will get to a place like I hear others can get to and that is to not only accept my demise due to this cancer but to actually be grateful for what it’s taught me and be able to say I’m a better person because of it.  I honestly cannot see that day coming any time soon but I know some people actually feel that way and I always think how much more highly evolved they must be than me with my attitude of anger and hatred towards cancer, my lack of acceptance at the loss of my health and energy.  I totally agree with the saying that ‘without your health you have nothing’, it is true, it eats away at everything you enjoy and love in your life and you are left with a longing for how things were, a longing to be able to do the things you did before with your children, a longing to be out of pain so you can actually enjoy watching them play, instead of writhing around trying not to let them know the agony you are in and yet are unable to hide  as you fumble for your pills with shaking hands and sweat dripping down  your forehead.  You become someone else, someone you never ever wanted to be in front of your children, someone you swore you would never be but when pain and agony hit you that hard all you want is to be put out of your misery then and there and it’s not fair because it’s the pain making you that person, you are not that person, you want to live a vibrant and full life but are reduced to a snivelling wreck begging for drugs and if you think I’m lying or exaggerating, then you haven’t been in real, chronic, agonizing pain.  Anyone who has, knows my words ring oh so true!

Anyway, it’s not pretty but there it is, that is how I feel and I see no point in pretending otherwise.  People come here to read our experiences and I guess I don’t want to pretty it up or make it something it’s not.  I may come out of this stage, I don’t know but for now what I am feeling is very real and very tough.  I did hesitate to share this post but decided that we are here to share all aspects of cancer and our feelings surrounding it and this is how I feel right now.  I don’t mean to be negative and bring everbody down but honestly it’s a part of the journey and I think it needs to be shared.

8 Responses to Lost in Thought…

  1. Amy@UWM says:

    Jen, this is the first I’m reading of your story and I can’t tell you how so very sorry I am to hear where you are in your journey. You are so brave to share your story and yourself during this very difficult time. I wish I had magic words that would take the cancer, the pain and the reality away from this situation. Wish I had words to just make you smile. But this is a sucky situation and it’s absolutely not fair. The only glimmer I might offer is that I work for a major cancer organization and I hear hundreds of stories all the time of people with dire cancer stories and many live much longer than expected. You just never know. I know its hard given the news you just got, but don’t give up hope.

  2. francesbarrie says:

    Thank you for sharing with us at this most brutal time. You are right, It is a part of the journey and unfortunately the journey you are in right now. We all here live in fear of receiving the news you did and I feel your heartache right down to my toes. There are no words on earth to make you feel better and so I will just tell you that I will pray for you, pray for a miracle, because I do believe that they can happen. Fran

  3. sprucehillfarm says:

    Jen, Keeping you in my prayers! Hang in there! You are an amazing woman, and you write from your heart. Thank you for sharing this part of your journey 🙂

  4. clergygirl says:

    Jen, I’m so thankful that you give us these occasional glimpses into the struggle you are going through. You are a strong woman and I know it must be truly difficult to be that way for your son. My thoughts and prayers are with you….

  5. justenjoyhim says:

    Oh, my dear, I think we all want you to share honestly. I’m glad you did. I have to say that sometimes I wonder at those “noble” people and wonder if they just hide the anger and pain when they aren’t in the limelight.

    I’m just sorry you’re suffering and that your news is such as it is. My prayers are with you, Jen, you and your boys.

    ~ Judy

  6. It is so difficult to read what you wrote, but I am so glad that you wrote it and that you shared it with us.

    I also have issues with envy. I want to grow old, and see my kids grow up. That doesn’t seem like such a demanding thing to ask of God. So, why can’t I have it?? I pray for that miracle — the miracle that the cure for cancer will be discovered before it is too late for me.

    I also struggle with the idea of accepting my limited time on this earth.

    I also hope to have grace and dignity when the time comes.

    I do not think I will ever be “grateful for what it’s taught me.” I resent it. I hate it. I am not a better person because of it. I would be a better person without it.

    Without cancer, I would not be in pain all the time. Without pain, I would have more patience for my kids, my husband, myself. Without pain, I would be able to do so much more… for my kids, my husband, my self.

    I think you are doing an amazing job of handling your situation.

    There is no way to know how much time you have left.

    One of the women in my support group was given 6 months to live (several years ago). Long after she was supposed to die, she watched several children graduate, and recently married off her eldest daughter. She will not live forever, but she lived longer than anyone believed possible.

    Don’t lose faith. You are alive now, and your son needs you now.

    That’s the only way to get through this. One day at a time!

  7. bcjenster says:

    Thank you for being honest, Jen. I wish I had something brilliant to say, but whatever I think of to say sounds so trite. I will keep you in my prayers.

  8. whymommy says:

    Hey, Jen. Thanks for sharing with us. I think of you often.

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