The News So Far…

Hi everyone, well on Thursday night, (last night actually), I had an appointment with my oncologist. I went in and sat down, he had a lot of papers in front of him that he was perusing as I sat and got settled. He looked up at me and said “well, I have the results of some tests here from Peter Mac, it looks very good. I’m not a surgeon but it looks as though the tumor is contained in the pelvic area. It is pushing up against your bladder and about to attack your vagina.” (sorry to be so blunt but I don’t hold anything back on this site).  Anyway, he repeated that the test results look good – in terms of having the surgery. He reminded me that it is radical surgery and that he thinks that if they are going ahead with it, it will be within six weeks, could be as soon as two weeks. He feels so strongly that they are going to go ahead that he canceled chemo, which was due today, as he said that if they do want to go ahead with the surgery, they will want me to have some time off chemo first so we may as well start now. He did say that if they don’t go ahead that it won’t matter in the long term that I missed a few treatments. He feels that this surgery is the best option for me and then said that actually it’s the only option. The Avastin, which is the best the cancer world has to offer me, will at best only buy me a little time, whereas this surgery may save my life. Indeed it is expected to or they wouldn’t be doing it.

So, how do I feel? Well, to be honest I was a little overwhelmed at first. I would be being untruthful if I didn’t admit that the immensity of the surgery frightens me. The recovery is very tough, it includes intense rehabilitation, I will lose my bladder, so it means having another bag – I will literally be a bag lady! It means having my rectum/anus completely sown up, everything in my pelvis gets removed so it is partly a radical hysterectomy as well as all the other things, I am not sure about my vagina but I think it’s quite likely they have to remove that too! Don’t ask me what that involves and don’t ask me how I am going to cope with that happening to me at the age of 39.  I guess I will cope for Jack’s sake.  So, as my mum puts it, she wants me to live as much as anyone, except perhaps for my children, but she still can’t help feeling ‘at what cost?’ She knows she should probably be glad that it can be done and that my life can be saved and she is but she finds it just heart wrenching that this is my only option. I understand completely what she means by that.

Then, later, when I was finally completely alone, I started thinking about how close I have come to losing my life, to Jack losing his mother, I have tasted it, tasted the fear and pain, the absolute gut wrenching thought of Jack’s pain when I just ceased to exist.  When he couldn’t turn to me and say how sad he was feeling, oh the thought of what he would go through was just tragic. All these thoughts went through my head and then I literally had to grab hold of the wall because I almost fell to my knees in gratitude and hopefulness. I felt this amazing love and, well sorry to repeat myself, but gratitude well up and wash over me in waves. I thanked God for all I was worth. The saying ‘thou shalt not forsake me’ kept running through my mind and I’m not even a religious person, although I have always believed in God.  It brings tears to my eyes now as I relive that moment writing it to you.

So all things considered, if the surgeons at Peter Mac do decide to go ahead, I am willing and oh so grateful for this second chance. Losing some of my insides is a small price to pay to get to stay with my boys. When I honestly think about what I would go through to save Jack from that pain of losing me, I would do anything I think, as long as I could still walk and talk, then I would do anything. It is not about me, it is about him, I do not want losing his mother at a very young age to be part of his heritage and part of who he is.

I must remember not to get too far ahead of myself because this is only the Oncologists opinion and as he said to me “I’m not a surgeon, but it looks as though everything is okay to go ahead from these test results.” He also seemed extremely happy, happy that I may have this chance. He told me that if I had decided to go through with it, to try not to think about it too much and just do it. Probably good advice, but easier said than done. I was talking to my nurse yesterday, before I went to my oncologist, she comes to see me once a fortnight. Anyway I asked her whether she had met anyone else that had had this kind of surgery as she works in the cancer and palliative community and is in charge of the nursing side of things across the entire peninsula. She has only ever met/seen one person who had this radical surgery. It was a woman about my age. She looked as though she wouldn’t recover from the surgery but she did- as thin as a rake. The cancer came back though, my nurse couldn’t remember exactly how long after the surgery it came back but she was sure it was under two years! I know everyone is different but it just shows that even if I do have this surgery, there is no 100% guarantee that it still won’t come back, or show up in a different place. They remove everything they can so it has nowhere to come back to in that area, but it doesn’t necessarily mean it won’t pop it’s ugly head up somewhere else, does it? So I go into this with my eyes wide open, knowing that it is a good chance but not definite.  I also forgot to mention that the surgery itself comes with quite some risks involved and it could kill me.  However, I figure I’m dead anyway without it, whether it be in two years or now.  That makes it worth the risk I believe.

Anyway as soon as I talk with my surgeons and find out exactly what is going to happen and whether they actually can do the surgery, I will report back and leave nothing out.

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10 Responses to The News So Far…

  1. imstell says:

    You are brave. And strong. And nothing close to a mere sum of your parts. If those inside parts are gone, well, that does not change the glorious mom and woman you are.
    And thank God for the medical advances that have given us all these additional chances at life.

  2. Sarah S. says:

    You are brave. Sorry to repeat but no other words can express that for me. I am keeping you in my prayers. Stella is right you are you and not a mere sum of your parts. You are right, you have a second chance for a reason. I am so glad you have a choice and are choosing to take control over your treatment. There are lots of people who do not get to have that choice.
    ((HUGS))

  3. dropped in to see how things were going? ………reading your words reminded me of the following quote-“Be realistic – plan for a miracle” Bhagwan Shree Rajneesh. Its good to see you taking control of your body and mind. Strength and peace be with you, will say a prayer for you tonight

  4. bcjenster says:

    Wow. What a horrible decision for anyone to have to make. But Jack is quite the motivation, isn’t he? As the other ladies said, you are brave. And the grace you exemplify through everything is such an inspiration. I know you’d much rather not be inspiring in this way, but I thank you for your openness and honesty. You are in my prayers, Hon.

  5. tracya says:

    i assume the surgery you are describing is called a pelvic exenteration??? you described it very well. i have cared for lots of women who have had this surgery and always feel really sad and wonder if they know the full extent of it…apparently you do.

    i don’t know the the long term success/cure rates but i think it must be fairly positive or they wouldn’t do it. keep in mind this would be considered a “curative” surgery not a “palliative” surgery.

    saying that i hope you can get through the recovery period and learn to cope with the “bags” there are some great ostomy nurses out there who can teach you the tricks!

    above all, just to add to what the other ladies have said, keep your mind clear and positive. surround yourself…. your heart and soul, with the love and support of those that care about you. sending strong healing vibes~~~~~

  6. Wow, that is some serious surgery!!

    Good luck!

    I will keep you in my prayers.

  7. Thank you everyone, I don’t feel very brave though, I’ve gotta say, I am really terrified of the enormity of this surgery and it has entered my head more than once not to have it. Of course, I cannot make that choice because I see it this way, it is either me to suffer horrendously or else it is Jack. It cannot be Jack. It’s that simple really. Yet, still very very frightening indeed. I appreciate the prayers and support and will need all I can get. Thanks again, take good care all, Jen B xxx

  8. justenjoyhim says:

    Oh my. My thoughts and prayers will definitely be with you. What a lot to go through, but yes, you get life and you get to mother your boys. I offer you this scripture: “I can do everything through Him who gives me strength.” Philippians 4:13

    All the best, Judy

  9. bcjenster says:

    But you know, Jen, brave is doing the best thing even when you’re scared witless. So yeah. You’re definitely brave.

  10. Johnna Macaw says:

    Hello. I read your story on being faced with a total pelvic exenteration. I too faced the same talk from my oncologist almost 2 years ago. My surgery was Dec. 21, 2006 and I am still here and doing well. Not to say it wasn’t difficult but I am grateful to be alive. I will be 46 years old in October and I have a 24 year old son. My cancer battle started when I was 39 years old with the 3rd occurrence resulting in the removal of all pelvic organs. The first few months were the most difficult but it did get easier as I continued to heal from the surgery. Learning how to deal with “bags” was the hardest part, but I found a wonderful medical supply store and support group. Just remember to give yourself a break when you feel like you can’t deal with life; it will get easier.

    Please let me know if I can help you in any way.

    Johnna

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