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  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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  • SUSAN’S ARMY

    No Princess Alone button

Terminal velocity

Dictionary definition of ‘terminal velocity’

noun

1.

Physics .

a.  the velocity at which a falling body moves through a medium, as air, when the force of resistance of the medium is equal in magnitude and opposite in direction to the force of gravity.
b.  the maximum velocity of a body falling through a viscous fluid.
2.

Rocketry, Ballistics .

a.  the greatest speed that a rocket, missile, etc., attains after burnout or after leaving the barrel of a gun.
b.  the speed of a missile or projectile on impact with its target.

Not quite the meaning of the heading above – unfortunately my definition of the title is something quite different.  It is how fast I have gone from being on chemo to how fast the cancer has taken off when I went off it.  in other words the ‘velocity’ at which I have become a ‘terminal’ cancer patient
When I made the decision to stop chemo 6 weeks ago all of us including my oncologist Dr H had an expectation that I would have a couple of good months before the cancer really started ramping up again  … how wrong we all were.  My blood tests of 6 weeks ago showed my CA 15-3 tumour markers had fallen to 174 and my liver function (GGT) was a good steady 117
I went away two weeks ago on a trip to the beach town of Whangamata (was going to do a pictorial blog post of the great time we had but thought I need to update you on this news first ) with my friends from uni (OH joined us later in the weekend) and realised then how much my appetite had dropped and also that I couldn’t stand in one place for more than a moment without getting quite dizzy and woozy.  I also had two bouts of unexplained nausea - one on the Sunday morning after which I slept for 3 hours and one on Monday evening heading home with OH.  The bouts of nausea and wooziness then became more regular and my appetite dropped right off so I knew something was going on, but nothing really expected me for the news that I got on Wednesday.
When I told Dr H at my oncology assessment the symptoms that I had been experiencing and then him doing a physical exam of my abdomen coupled with my blood test results the evidence was irrefutable. The liver just on physical examination was significantly larger than it had been  6 weeks earlier and it was the cause of all my issues – it was large enough to be pressing on my stomach restricting how much it could hold and the reason I was feeling so dizzy/woozy when standing was that it was actually pressing on my femoral veins so that my blood wasnt able to circulate properly and my brain wasnt getting enough blood flow.
Then he divulged the results of my blood test CA15-3 had jumped from 174 to 2060 and GGT had jumped from 117 to 1165 which meant my liver was no longer able to cope with the tumor load without affecting its function – that is my liver function was starting to be impaired and will ultimately fail .  When I asked him a time frame, while I had prepared myself for the fact when my liver started to fail I would have very little time I wasnt expecting his answer.  He hesitated and said worse case scenario 3-4 …weeks (!!!?@@ was appearing in my brain at this point) best case scenario 3-4 months – in all likelihood somewhere in the middle of those points but if I got ill at all it would be looking more at worst case scenario because at this stage my liver can’t handle me getting a cold on top of the tumor load.
He put me on steroids to try to take down some of the inflammation that the enlarged liver has caused to surrounding organs, He said I would be due to have a follow-up visit with him in 6 weeks but I would now go under the doctors at hospice for more routine symptom management.  He is not sure I will be well enough to travel to the appointment in 6 weeks but he will schedule it in the hope that I can.  Before I had my assessment they had been scheduling me for an MRI just to see the state of play and I had just received the appointment for that but Dr H said given my symptoms and the blood test results the MRI wasnt going to tell us anything we didn’t already know and that it was a waste of a day that I could be spending doing something more important or enjoyable.
One good note I can say about velocity at this point is having already been in touch with the hospice and being registered with them and they know what my needs might be when I rang them yesterday morning (Thursday, the day after the oncology appt) the hospice nurse came out and visited me later that morning and today (Friday) I was delivered a shower chair, an electronic lazy boy and a wheelchair. The shower means I can sit while showering thus not getting dizzy/woozy standing in the shower. The electronic lazy boy means I can sit/lie with my abdomen not scrunched up therefore allowing me to eat easier and as time goes on, if I get weaker it also has a function of helping me stand up.  And the wheel chair means I can still get out and about on fine days.

wheelchair

shower chair

electronic lazyboy

The family is all in a bit of a state of shock but because we have already talked about a lot of things and half-planned out some of the eventualities now it is just a matter of putting what we need want in place.

The hardest thing is to let go of my independence from now on. I can’t drive myself anywhere or do anything by myself and I need to have people to help me – the family is rallying around and I am trying to schedule others who want to help around them.  This is the time when I do need to accept the help that people want to give.
There will be some follow-up posts to this one to clarify but I thought I better update you all as to what was happening.
Leave a comment

36 Comments

  1. I am sending all my love. I don’t know what else to say.

    Reply
  2. Lisa F

     /  July 19, 2012

    Sending you love & hugs from across the ditch xxx

    Reply
  3. extremeparenthood

     /  July 19, 2012

    Oh, Jenny. I wish now more than ever I had that transporter so I could come be with you. I hate cancer. I hate that it robs me of my friends and my family.

    But I love you so very VERY much and if there is ANYTHING I can do from half a world away I will do it.

    I am sending you all the love and prayers for peace and good days.

    Reply
  4. Marti Staton

     /  July 19, 2012

    Jenny, I wish you as many “good” days as possible. Your spirit, even now, shines so very brightly. I am sending prayers for you and your family.

    Reply
  5. I’m a friend of @whymommy and a tweet from Kate brought me here. Praying for peace, courage and comfort for you and your family. You are making a difference in this world.

    Reply
  6. Mandy Boyd

     /  July 19, 2012

    Dear Jenny, My thoughts and prayers are with you. I wish you peace and strength through this terrible journey. I hate this Cancer!!!! God bless you and your family. xxxxx

    Reply
  7. Louise

     /  July 20, 2012

    This ex-Kiwi’s thoughts are with you. Hoping for good days for you and your family. F cancer

    Reply
  8. It is so hard to accept that you are preparing for the end when you sound so calm and in control and logical. My heart aches that it has come to this, now, for you. I hope you know that you are in my thoughts and prayers always.

    Reply
    • jaydub26

       /  July 20, 2012

      Its one of the things I said to MD when we were talking about it. I feel too alive to be dying. I dont know what I imagined that it would be like *shrugs*… zzzz I do know I am going to hang to living as much as I can out of every day until I die

      Reply
  9. Nina

     /  July 20, 2012

    In my prayers always. Strength to you and your family.

    Reply
  10. angie

     /  July 20, 2012

    You are a woman of unending strength and grace! My thoughts and love are you with and I’m so grateful to have gotten to know you. Since I’m too far away to help you – I’ll do my best to continue to distract you with Words with Friends games. Sending all my love and hugs! Angie

    Reply
    • jaydub26

       /  July 20, 2012

      lots of ‘word with friends’ games sound good to me :D

      Reply
  11. Jenny,
    I’m heartbroken over this. I hope you realize how much you are loved and supported. Obviously from people all over the world as you are in New Zealand and I am in NY….. Tears are flooding my keyboard at the moment. I’m going to scream in outrage that this is happening so quickly.
    You are in my heart and will be there always….. I send you my love.

    xoxox

    Reply
  12. Donna Robson/Speedy

     /  July 20, 2012

    Hugs to you and your family, Jenny :)

    Reply
  13. Ruth Coates

     /  July 20, 2012

    All my love to you my cyber IBC friend. Hugs to you and your family. Enjoy your time together as much as you can. My prayers are going up for you all.

    Reply
  14. Evon

     /  July 20, 2012

    <3

    Reply
  15. Juli

     /  July 20, 2012

    I really don’t have sufficient words for you. You are handling this with so much grace and wisdom I cannot help but be filled with admiration for you. You will always be in my heart , I love you Jenny my IBC sister and I pray with all my heart this transition is as easy and peaceful as possible, for you and all around you. My deepest love to you dear lady , Juli

    Reply
  16. adagemedia

     /  July 20, 2012

    Jenny – my thoughts and prayers are with you and your family

    Reply
  17. I was waiting for but not wanting to see this blog update ever since you said “bad news” I don’t have anything to say that will really convey what I want it to, so (((((JENNY)))) is all I have for now. I am so so glad you have strong support systems in place and an amazing family around you. Will talk soon :)

    Reply
    • jaydub26

       /  July 20, 2012

      We will have to get that coffee date organised maybe on a Monday when OD can join us – she has Mondays off for the foreseeable future

      Reply
  18. kathy and gary

     /  July 20, 2012

    Thinking of u jenny sending you and all your family our love you are one most amazing person love u loads xoxoxo

    Reply
  19. Jenny, what a terrific writer you are! You capture the scenes of your life so beautifully. You, my IBC sister, are a gift to us all. May you face each day with the grace you are showing me. I hope when I am where you are that I can face the end the way you are. You inspire me.. Lots of love and wishes for no pain.

    Reply
  20. natasha yates

     /  July 20, 2012

    sending all my love to you and all the family

    Reply
  21. Dear Jenny. Your bravery while telling us all this astounds me. I know that no matter how prepared you think you are for news such as this that you realise how totally unprepared you are for the reality. I wish you many more days of love and laughter to wash those tears away. Your strength and grace have been so admired. I know that you will be more worried about your family than you are about yourself. Your contribution to the lives of others will always b e an inspiration.
    I spent a day recently teaching art to Koru Care kids voluntarily. What amazed me the most was the children’s sense of humour and absolute joy in which they approached the tasks.
    I hope you are able to have days of pure joy and humour.
    Lots of love
    Cheryl

    Reply
  22. Jayne Muir-james

     /  July 21, 2012

    Your strength and courages amazes me in how you are dealing with Gertrude. Thinking of you and your family this weekend and for what lays ahead, see you in the week ahead. X

    Reply
  23. Oh my, sending my love.

    Reply
  24. Pam

     /  July 21, 2012

    Jenny I am thinking of you and your amazing courage in what you are facing. My thoughts are with you and your family and I wish I was closer to help out in supporting you and your family. Your emails are always so full of hope and strength, take care and be surrounded with love. from Pam

    Reply
  25. Stopping by because of a link from my friend Sunday. I also knew Susan Niebur, though only virtually. Your words show me strength and bravery, even if that’s not what you are feeling. Take care of yourself as best you can and know that complete strangers are surrounding you with love and light.

    Reply
  26. Diane

     /  July 21, 2012

    So much love goes to you. You truly are an amazing person. Thank you so much for coming into my life

    Reply
  27. Jaime

     /  July 21, 2012

    You are an inspiration to me through my own BC journey. You show me grace, strength and courage. Make the most of everyday and try to keep that beautiful smile on your face. Sending you and your family all my love and you are in my thoughts. Look forward to catching up very soon. Xxx

    Reply
  28. catt [AKA MyRickysKitten]

     /  July 22, 2012

    You have been a beacon of hope and strength to me as a very dear family friend was diagnosed about 8 months ago Gena is like a sister-in-law to me because she and my brother had a semi-commitment for over 30 years even when they had their separate lives. Gena was the only one who saw my tears when he died suddenly last year, she was the only one I could really share that pain with….. Seven short months later she was diagnosed with IBC, and it had already spread to her bones. I am sending you a gentle hug and a prayer of peace for you, your family, friends, and associates….. you may actually be getting that early parole, but we are not done needing you here with us, dear Jenny.

    Reply
    • “Early parole.”

      I can only guess to what ideas this alludes. But if it is the same sorts of ideas that I have, for which the concept of “early parole” would be quite appropriate, I must say that I sympathize with what you wrote, Catt. I am equally torn between embracing that idea and yet wanting those I care about to remain for as long as possible.

      Reply
  29. Jenny. I am sending so much love your way. I’m sorry things are happening at this pace. And yet it just doesn’t seem like I’m sorry is actually conveying what my heart is feeling for you right now. I am thinking of you. xoxoxo

    Reply
  30. Marie M

     /  July 22, 2012

    Jenny I am speechless and just wanted you to know I am thinking of you

    Reply
  31. Lori Erickson

     /  July 23, 2012

    Jenny, I am truly hoping the rest of your journey is as comfortable as possible. Thank you for the support you have given me my ibc sister.
    I also have special needs children ( young adults), and being a single parent it has made the ibc journey extra hard. When my kids were younger we found a cabage patch doll sized wheelchair. I wish we still had it, I would send it to your daughter. It really helped my kids to have a plaything that realated to their brother’s new wheelchair.
    Hugs to you and your family.

    Reply
  32. Jenny Bradley

     /  July 25, 2012

    Hey Cuz, have just heard the news and read your lastest blogs…dont really now what to say, just get as much enjoyment out of life on the good days

    Heaps of love to you and your family

    Reply

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