Tuesday, 12 February 2008

Wow, It's Been Amazing...

Hello my dear readers and friends, I know it's been a while, I have had a lot going on and have been wanting to post but needed to find some quiet time to do so. I think it's about as quiet as it's going to get at this moment so here goes. First thing of course is how amazing your response to my illness and to my question has been. I am just so blown away by it, by the goodness and love that is out there in the blogosphere. What an amazing group of women, reaching out to each other in times of need and nurturing each other when times are tough. Well I have been the receiver of such support and such love this week that I have cried, I've laughed, I've been inspired, I've been carried through one of the most difficult times of my life, I would say the most difficult but I know there is more to come and I don't wish to presume, perhaps the most difficult to date. Reading all your comments and emails have carried me through this and when I have started to feel weak and terrified with my heart so very heavy, I have come back to my computer and clicked on to your comments and emails and been loved and supported and nurtured and heard and prayed for, oh I have been carried through those awful desolate feelings by your words and your love. I cannot possibly express to you how this has helped me so very much, I have been amazed and touched by the spirit and strength of your support. I am handling this news so much better than I should be in theory and I know it is because of all of you coming to me and supporting me. This is more and more a womans domain this blogging and I believe we can achieve amazing things through it. It is a tool to be used, we can use it to change lives, to get our opinions out there, to gain support, to give support and it seems to be mainly woman that use it in this way. It is something we can still do even though we may have toddlers running around the house 1/2 dressed and needing faces wiped, someway we can keep in touch with each other and be there for each other whilst still being at home or at work wherever we are needed most. It is a convenient way to reach out and I believe for Mums at home raising children it is a wonderful way of having some adult communication, a way of finding others in the same circumstances that can help us get through and vice versa. I really do believe it to be a very powerful tool. Just my story and sadness has beamed out to so many of you and perhaps made people much more aware of what bowel cancer is about and what it can do to you, in terms of body image and coming to terms with that as well as so many other issues. I am aware that I have not finished explaining about bowel cancer fully and very aware that I promised to show photos of what the surgery does to you. I intend to show before and after shots not because I like doing it, in fact the very opposite I am embarrassed about how my body looks now, however, I strongly believe people need to be aware. As I have said before there is so much support available for women with breast cancer and their body image issues, which is wonderful but bowel cancer support falls short of the mark and I doubt most people would have any idea what a 'bag' looks like on somebody and what wearing one can do to your self image and issues regarding sexuality and partners and self confidence, so this is why I will do it, to educate and to say to people 'lets at least feel for the people with bowel cancer as much as we do for women with breast cancer.' Let's have put in place support on levels of self image and all of the things I've mentioned and a lot that I haven't yet. Anyway off my soapbox again, sorry girls but I feel strongly about this issue.

Now I know you are wondering how I am feeling, I mean really feeling, being the caring women you are naturally you want to know and I want to tell you, I need to tell you because you have become such a big part of my healing and my strength. So here goes. I am I think a bit numb, not completely but probably blessedly more numb than I will be sometime soon. I haven't really had a good hard sob, you know the kind where you sound like a sheep and snot runs down your chin and you can't breathe properly. Gross I know but very normal, so I know I am not feeling it past a certain point. I hope that makes sense. I have moments where I touch on it and it's like I shy back, unintentionally but it happens. Yesterday morning as an example I took Jack to school and we were a few minutes late (they had assembly so it didn't really matter) so I walked him in and got a late pass at the office and then walked him to his class. It was an absolutely gorgeous morning, so bright with sunshine and the spot where his school is situated is in bushland and it's so pretty. Anyway, I dropped him off to his classroom, they were all outside the room enjoying the sun and at Jacks school all the teachers wear hats when outdoors to show a good example. Anyway, you're thinking were is she going with this, I'll get there I promise... So I said goodbye and started walking back up to my car. It was very quiet and peaceful, I could hear faint laughter and talking behind me where I had left the children and teachers, I had an image in my minds eye of Jacks teacher, she looked especially Summery wearing a pretty wide brimmed hat and a sweet top with little crystals on it, sweet sandals on her feet, so I'm walking along with her image in my mind and a lot of the other teachers all looking pretty and bright and full of energy and sparkle, keeping up with their students and motivating them and I just fell apart. Not sobbing madly like I described above, but this deep, dark, heavy sadness came over me and the sting of my dry, dry (to dry) eyes as the tears welled up and as hard as I tried not to let them, over and down they fell running down underneath my sunglasses. It felt surreal, I felt frightened and cold, I was in a moment that stood still, everything was crystal clear, the blue of the sky, the warmth of the tar under my feet, the scent of the eucalypts, the far off laughter and chatter of happy people at the start of a wonderful day. Then as quickly as time stood still for me, it then raced forward and I wasn't there, I didn't move forward with the rest of them, I was still alive but I was never going to feel that carefree, happy, energetic sunny morning feeling again. I felt grief I think, and loss and awareness. I started walking again up the hill, it was hurting my legs, I was panting slightly, aware that this was difficult for me and it shouldn't be, I am only just turned39. I felt the pain in my bottom which is constantly there, the leakage which is constantly there, (don't know if I've shared that before - lucky you) sorry but it is my reality. The leakage that requires 3 large long pads a day as it is my bottom that leaks. It is a horrid feeling to constantly feel as though you haven't dried in between your cheeks and it stays that way all day long. It makes me want to huddle up at home and not go anywhere. It is not faeces, it is mucus, blood and pus and revolting stuff from the tumor! I really am sorry because it is horrid to speak about and I don't mean to offend anyone but this is what I deal with every single day. I also happen to know that there are a hell of a lot of other women and men who also have similar problems but feel they cannot speak about it, which I totally respect and I wouldn't have either until I decided it was high time someone did not for me but for them and all those to come yet. Anyway, I have worn these pads now for two years straight. I cannot go without them even at night. Anyway back to what I am feeling there in the bright sunshine. I feel those things, I feel the weight of my prognosis on my shoulders, the weight of not being able to do this simple thing like dropping my little boy off to school when we happen to be running a little late on a beautiful, sunny morning. I stood still for a moment and thought I really hope Moi (that's the Assistant Principle) doesn't see me and walk over to me just now because if she does I am a goner, I would have sobbed my heart out, I think a teensy tiny part of me may have wanted her to at the same time as being horrified that she would. (I know I'm a strange mix of a girl). I stood still and wondered, is this it, is this where it starts crushing me, it felt like it would for a minute, it really did, I began to prepare myself I think for the notion that I was possibly going to lose it and crack right there in the school grounds. I straightened up, with enormous effort I looked up and I could see my car not far from where I was standing, I thought just keep walking and get home, you can sob in the car, you can fall in a heap at home. So I made it to the car, I got in and I didn't lose it, I did have a few tears on the way home, I did speak to God and the Universe angrily, begging and saying things like, 'this has to stop, this cannot happen, don't you understand, it is not just me it's going to happen to it is Jack and Jamie and everyone who loves me'. Anyway I had it out with whoever whatever and made it home. Once there I was somewhat numb again. I made a coffee, checked messages and got busy with daily stuff again. The feeling lingered inside me though, the sadness I felt at that bright sunny day and the laughter and energy and pretty flippant hats. Later that afternoon I was exhausted, absolutely shattered exhausted, I had to go to bed then my sister phoned and said you sound terrible, I explained that I was so tired, and she said go to bed, I said I can't or I wont wake up to pick up Jack in time (it's happened to me recently) so she kindly offered to go and get him for me and told me to go to bed, which I very thankfully did.

Another problem I have been having that is scaring me a lot is dizziness that comes over me in waves and falling asleep. I mean falling asleep in an abnormal way. I will fall asleep at the computer, literally wake up with my head against the screen, flopped over the keyboard, yesterday I fell asleep twice whilst standing up, I was leaning over the kitchen table reading the school newsletter so I had support of my arms leaning on the table but I was standing up and fell asleep, just for a minute or a few seconds, I would jerk awake in a fright and have lost my balance, I shook myself and then leaned over to continue reading and it happened again. This has been really worrying me and it's been happening for a quite a while now. That's the first time it's happened standing up, but for a at least a month I have been falling asleep talking to Jack, I will start jibbering about something totally irrelevant and I've done it so often now he says "Mum you're doing that thing again, wake up" it's become normal to him almost. I do it whilst reading him a story or his reader all of a sudden I am saying different words just muttering things that have nothing to do with anything but I'm sort of asleep, I do it sitting at the table to have a meal, I do it when reading myself. I haven't ever been the kind of person that can fall asleep just anywhere, I have always had to go to bed to sleep, I couldn't ever just fall asleep on the couch, I had trouble falling asleep in a different bed, ever since I was a child I have been this way, no matter how tired I I was I would have to go to bed for sleeping. Now I can't control it at all. Of course I am going to think the worst, I am thinking brain cancer, tumor in there pressing against a nerve, but I am aware that it could just be the strain and stress or as it's been going on for a while it could be the pain I've been in for so long taking it's toll and exhausting me. At one stage, I went on a lot of pain meds to try and find some relief, this is when I noticed I was falling asleep so easily and inappropriately. I went off the pain meds as I believed they were the cause, I would rather have pain than be groggy all the time and fall asleep like that when I have a young son to take care of. So I did go off the pain medications but nothing changed, I waited thinking it may take a while to get out of my system, although I wasn't on them for very long, anyway it just kept happening so I realized recently that it was nothing to do with the pain medication it was me. I am off for another CT scan on Monday so perhaps that will put my mind at ease, although probably not as my doctors feel quite certain there will be cancer elsewhere, possibly bones, lungs or brain. Needless to say I am not looking forward to that and in fact have put it off once already. I just feel as though I want to stay at home in my pajamas and not have to go anywhere or do anything except sleep, read, watch movies, eat and sleep some more. I am craving this, I hate that I can't even do this for one day let alone one week. Maybe it is depression I am showing because I really hate going out, although sometimes I have wanted to and gone and then have felt so uncomfortable with the leaking and the pain etc that I wish I'd never gone, so perhaps it's just the reality of how much effort and how much discomfort I am in when I do go somewhere. Either way I really want one week to stay in bed or on the sofa relaxing and not having to do anything, even cook!

Okay my dear readers, I have really tested you with such a long post, I am sorry but I just have so much to say and share. Thank you all for being there for me, I feel like I am heard and that is a wonderful gift. I will keep you posted as to what is next, as I said CT Scan on Monday and then my Oncologist on Wednesday the 20th, that will be interesting as he is going to inform me as to what chemo treatment he is going to try, for how long I'll be on it and all of that information, which I then share with my Professor/Surgeon that I saw the other day, as he is helping me by letting me know whether he agrees with my Doctors or not. Also I want to thank you all for your wonderful answers to my question. You have been such good sports and dug deep for this one and I so appreciate it, I have kept every answer and will read them when I need reminding of the important things. Also, I have not managed to get back to all of you yet, but I will. I have responded to some and I just want you to know I am not ignoring you it just takes some time to get to every one and no, don't tell me I don't have to, I already know by the type of comments you leave that you would not expect me to respond but I want to, I really do, so just humor me please. Take care my dear friends, you have my heart and my gratitude, with much Love Jen B.xxxxxxxxxxxxxxxx


  1. Jen, you totally amaze and inspire me. Thank you for sharing your journey with us readers, and granting us the wonderful privilege of sharing a bit of your life.

    Thinking of you tonight, and sending up lots of prayers,


  2. you know that feeling when you wish you had the resources to get on a plane, fly to Jen B's house,
    take care of everything you could possibly think of and drive her little sweet boy back and forth to school and tuck you in bed with perfect lighting and soft blankets and a magic wand to make all the yuck go away?
    that would be my wish right now.
    love, jen gray

  3. Please don't be afraid or shy about sharing details of your disease. People need to become more open and aware of the many different types of cancers that are out there, and the effect they have on day to day life. So THANK YOU for sharing your journey with the rest of us.

  4. Jen, I found you through both Bella and Jena. I wish there was something more adequate I could say, but all I can think is how sorry I am you have to deal with this. I had a good friend die of cervix cancer at 45. She left her 16 year old daughter and 11 year old son. I think of her often. My brother-in-law had colon cancer, but he has since recovered. At the time I was too far away and too young to really think about what he was going through, but since then, I have often thought how stupid I was not to take more notice. I appreciate your descriptions. I appreciate your courage. You have obviously touched so many people and that will live on forever. My prayers are with you and your family. I wish I had found you under different circumstances, but I'm glad I'm here now.

  5. Jen - I am also a new reader; I e-mailed you last week. This post amazes me, all you are enduring. What a strong, sweet soul you are. I, too, wish I found you under different circumstances but I am glad to be here now, 'virtually' holding your hand along with all the rest. My thoughts of strength and peace are with you - Jo in WI

  6. Some people spend their whole long lives wishing they could create the kind of nurturing, life-giving space you've created here.

    A little ironic maybe.

    You are remarkable. You are creating something amazing. I hope you don't miss noticing that.

    Praying peace over your heart, head and body...

  7. Jen, you are a very eloquent writer. I am reading your story and I feel I really have a glimpse into your life. The grim details of life are often the ones that people remember forever. You have touched many souls through this blog.

    Thinking of you and your family and will be keeping you all in my prayers.

  8. Hi Jen,

    I am still here, thinking of you so often Jen and praying to the universe to hand you a break soon.

    I'm heart broken for you. Such a stuggle every minute of every day, no wonder your body is telling you to rest and I hope you can.

    I'm thrilled to see how women around the world are embracing you. I know you don't feel it, but you are incredible, a true goddess.

    Much love and hugs to you

  9. Amen...Yes you are a Goddess dear Jen--You have touched so many people. i am so proud of you for reaching out and kicking down the taboos that prevent us from knowing and understanding life with this awful disease. you are today and everyday my hero
    love you

  10. jen--so glad to read this post and hear exactly how you are feeling. i so hope for all the space you need to be sad and the just right people to be sad with... hang in there...

  11. Wow Jen! Thank you for your honesty and for allowing us to share with you in your journey. I'm praying for you sweet friend.


  12. no words really, just here with you, sad with you, listening. sending my love and prayers...

  13. I know you don't feel very strong and brave right now. But, you are in ways that most of us never can understand. I've been praying for you daily ! I know that you are sharing your deepest thoughts with strangers but just know that it is strangers that feel a kinship and if we could, would reach out and give you a hug.

  14. Thank you.

    I completely get that wishing/not wishing that someone would walk up to you and ask what's wrong...

    Maybe next time, she will ask, and you will tell, and the burden will be a little lighter.

    I wish that for you. Thank you for sharing your journey with us. I am re-evaluating my priorities, thanks to you.

    Bless you,

  15. Jen,
    I've rewritten this message at least three times, trying to find words that would adequately express my awe. I don't think it's possible.

    Your heartbreakingly clear and lucid explanation of your morning and the deep sadness it produced, of what it's like to have bowel cancer (oh my lord, sweet girl...), it all makes me so unbearably sad. No wonder you raged at the universe. This should not be happening, and it's ridiculously unfair.

    I'm a single mom, like you, and just started a new job, but I hope to find a way to support your wish to promote colon cancer awareness. I agree that we breast cancer chicks get all the good press.

    You take good care, my friend.

    Much love,


  16. Your voice is heard! I think it is so important, what you are sharing, and I think you are an amazingly courageous lady to share it with us.

    I still don't have the right words to share, but my thoughts are with you.

  17. Jen, I am also a new reader from Brisbane.

    Sending you strength and good vibes! This post is inspirational.

  18. Thinking of you from Nova Scotia. You are so Brave! and I am so sorry.

  19. ((((Jen))))
    Thank you for this post--for sharing all of these details. You are very brave, I can't say that enough.
    And I know exactly what Jen G means. I want to fly to your house, hold you through a good cry, then clean your home, do the dishes, make dinner, hand you a nice cold drink and sit on your porch until it's time to pick up Jack.
    Please, Jen, ask for help. Get a circle of people to give you daily help. You and your son need and deserve this.

  20. Jen, you so totally inspire me. I have been lurking in your comfy zone since I first met you thru the shaz's ostomates forum. I was originally sitting here at my computer at midnight because my stomach was hurting so much it hurts to lie down... I have taken some pain relief but am waiting for it to kick in. I don't have a bag thru Cancer, or any of the usual reasons.. I was lucky enough to be classed as "rare" I have a major motility problem with my bowel... I will explain more in time. You inspire me so much in your honesty and your strength and absolute adoration of your adorable kids... I have adorable kids... I will have to start a blog and introduce you to them.
    I don't know what I can offer you other than a friend. I am a bag lady like you, and I am almost the same age as you. We need to chat more I think.


  21. Jen...
    don't hesitate for one second about sharing what you want to share with us.

    you are an amazing writer and what you share with us is so eye opening !

    you speak, we listen and pray and pray !!

    you're bravery is our inspiration !

  22. Jen,
    I have lurked for quite a while, but wanted to actually comment to say thank you. Thank you for your honesty. Thank you for your truths.

    I wish i knew the magic words to make the pain and anger and fear disappear, but the only words i have are these....

    Love, Laughter and Hope.
    All of which i send to you.

  23. Wow Jen. You are an incredible person. In the few short weeks that I have read "The Comfy Place" I really feel as though my life has changed because of you. I feel as though you have taught me more about people, how to treat them and how to live. You write with such honesty, bluntness and humor and it's all so inspiring. Thank you again for sharing this with us and know that you are thought of often. {{{HUGS}}}


  24. Jen,

    I am thinking of you so often now...always wondering how you are. You are not alone and thank you for sharing your journey with us. You are an amazing person!


  25. Jen

    I'm still praying for you sweet friend. I hope it's okay...I linked to you in a post I did about this wonderful "Land of Blog", praying for each other and cancer survivors.


  26. http://crazysexycancer.blogspot.com/This is the web address of Kris , she is an amazing woman and cancer survivor. I think you will be inspired by her story. I am a breast cancer survivor (four years) so far and your story touched me very much. I am praying for you and believing in you.

  27. I am absolutely amazed and impressed by your sincerity and your sharing. What a courageous thing to write and share such a difficult journey. Sending plenty of light warm thoughts your way.

  28. It's really brave of you to share what you are going through. I did a project on bowel cancer last year and I understand how important it is to get the message out.

    Like so many of the other readers out there, I wish that I could come and help you out. I hope it's enough that we all think of you and are sending our good wishes today.

    I was trying to explain to my friend today about how it feels to have a blog and be a part of this blogging world. It really is a way of making this great big world so much smaller. I am so thankful that I decided to become part of this community and hear stories like yours.

  29. My heart breaks for you and your family. You are all in my prayers.

    Thank you for your honesty and courage. You are an amazing woman.

  30. Jen, I can only echo what so many others have written here - you are an amazing person, and I wish all of us, collectively, could just take a way a few of the horrible realities that you have to confront. Thank you for sharing. You are in my thoughts and prayers and in the band of my mind throughout the day.


  31. I am de-lurking to say that I found you through another blog I have been reading and wanted to say what an amazing woman and mother you are. I have been saying lots of prayers and will be thinking of you on your upcoming dr. visits and hope your mind can be put at ease. Take care - much peace and light!!!! Keri

  32. Jen - it amazes me that with all you are in the midst of, the thought of a brain tumor can even occur to you as "the worst". It is all relative, isn't it? You are a beautiful writer. I feel so appreciative that you take the time to sit and get all of this out - out of your body, and into the world, into our lives. It's a gift all around. Enjoy the sun and the rage and your boy and, as my grandmother would say, "Love every day."

    xo Jena

  33. Your strength and courage are overwhelming. Thank you for giving this disease more than just a name. I know a little of what you speak of, and it is hard to talk about. But so important to do it.

    Anxiously waiting for the next update,

  34. I have never been to this blog before, but I wish you all the love, strength and courage one can possible have as you continue this fight. Thank you for your candor and good luck.

  35. I just came across your blog last night. Of course I had to sit down and cry with you. And, your question hit home. I'm off to write a response. But I want you to know you've already changed my life. I'm far more in tune with what is truly important. You are touching and changing lives daily- making this world a better place for all.


  36. Jen,
    i am sending you love. big, big, big love...
    thank you for your sharing. take up as much space as you need. the space is yours. we all want to hold the space for you, brave, radiant woman.

  37. Jen, you are an amazing woman. I stand in awe of your courage and openness, your willingness to tell us of the reality of your cancer. There is nothing I can do but be witness to that, and offer prayers for strength and healing for you and your family. You read minds, too - you knew it came into my mind to tell you you don't have to reply to comments, that you need your energy for yourself, for your son, and then you said how you want to. I understand that too, I think. I feel really glad and very honoured to have met you here. Blessings to you.

  38. Big, big hugs over the miles as I read your struggle... I agree, it is good to read about exactly how you are feeling -- too many times we have to brush it off or minimize and somewhere inside we're just screaming for someone, anyone, to actually KNOW what's going on. My partner has a long-term chronic illness (which we are still trying to figure out) and she struggles with trying to shield me and also wanting so badly to be heard. So I just wanted you to know -- you are heard, and loved, and encouraged, and I want to know how things are going.

  39. Dear Jen,
    I happened to come across your blog through anothers. I agree with one of the others who left a comment, I wish I could get on a plane and take care you. Hug you. Comfort you. Make you feel better. My brother went through cancer and I feel so very much for you. I will pray for you everyday. Stay strong and always pray. Thank you for sharing your most personal story and know you are special. Hugs, Rosemary

  40. I have just found your blog for the first time and I am so glad I did - wow, what a brave, real, honest, inspiring woman you are. Thank you so much for sharing your journey.

  41. I'm here.
    I hold each and every one of your words with love and respect and gratitude.

  42. This is awesome. Thank you for giving us a little peek into your world, even the hard parts. I have a friend with bowel cancer and I hear from her how hard it is ... my heart goes out to you, but not in a sad way ... it wants to hold you up and to sing with you, for the joy that you have experienced and will continue to experience still, and for the love that you are seeing now.

    Thinking of you, and wishing you moments (long stretches) of happiness.

  43. Hi Jen - not really sure what to say - I just came to your blog via Jen Lemen's - I am so moved by you and your wonderful earthy real way of sharing. My heart and soul are with you! Keep taking strength from the love and support we bloggers can and will keep sending.

  44. Jen - I never underestimate the power of the web. We are all holding you as you share about your fight. You and the other courageous women I have met through your blog are always in my prayers.
    K X
    ps you've got mail.

  45. jen, thank YOU for continuing to share with those of us all those details you find so uncomfortable to share, because SOMEONE needs to tell about them, and it may as well be someone with your tenacity!

    continue to leave your footprints jen...


  46. Thank you for sharing with us. Do you have friends and family around to help you have your week in bed? People to cook and clean for you? Take you son to school?

    Take care of yourself sweetie, sending you good thoughts and a hug.

  47. Dear Jen,

    We have given you a Candle of Blessing.

    When you can, come over to our blog.

    Jenn and Jacqui

  48. As a cancer survivor myself I can tell you that there is light at the beginning, middle, and end of the tunnel. I send you love and light as you walk this journey.

    Know that there are many praying on your behalf, and that believe it or not, this is some wacky spiritual process you signed up for.

    Sending love...

  49. present. fully. and I will be all the way through.


  50. I pray for you every day, throughout the day for that damn tumor to be gone.

  51. Jen,
    I am saying a prayer for you and your family tonight and everytime I think of you. Tell your story, all of it and feel the strength of all of your supporters and then some. We are all connected some way so I feel and I care.

    Happy Valentine's Day!


  52. Oh Jen, would that I could take some of this from you. There are no words that you could share here for which you'd need to apologize. Thank you for allowing us to accompany you, through music, words and prayers.

  53. Please, please, no apologies. Your words have so much power and each one is so important and precious.

    The details make it real, the details show the lessons for all of us, the details educate us and bring us together. There is no shame, dear friend, only love to be had.

    I am in awe of you even getting through each day. I am learning from you and thinking of you often. I am sending thoughts and prayers and light your way.

    Know you are held by so many, and know you are a teacher...

    Love from California again, Megan

  54. Thinking of you from Bavaria in Germany. You are so brave and you are an amazing writer.
    Hope it's not too trivial to ask, but what are you eating, can you still enjoy your meals? Eva

  55. Hi Jen,
    What a beautiful and yet sad post about your day at school - I cried and then you described so eloquently your tears. Thank you for painting and sharing that vision and I just want to say that I'm sorry from the universe for what you're experiencing.
    It's not fair and not right and not anything okay and if I could, I'd do exactly what jen gray (two posts below) would do... so perfectly said. (Thank you JG!)
    I found your blog via JenLemen and think of you often, sending prayers and good wishes your way.
    Thank you for sharing your story - just increasing awareness about rectal/anal cancer is such a task and to do it so well is a gift. A gift that I wish you couldn't give, btw, but much appreciated nonetheless.
    I'll keep checking in on you and sending you prayers and wishes for much healing, many miracles, relief from pain, an abundance of love everyday and peace.