Friday, 24 October 2008

Settled In...

Hi my dear blog family, now that I've been home a little longer and settled in a bit I'd like to share some more of the story so far. I arrived home via ambulance on Friday 17th October at 5.15pm (it's daylight savings here so it was lovely, light and sunny) Jack and David, my darling friend Lee and little Otus (pup), were all waiting on the porch for me and Jack got to see the ambulance. Anyway, it was just so lovely to be home, oh there truly is 'no place like home'. Jack was just thrilled and I felt so much love coming from him, he was just so very happy to have his mama back! I have come back a little worse for wear, I know David has been doing a wonderful job updating my blog and letting you all know what has been happening. He was doing great right up until the bit where he said "we don't always agree and we are not close at all these days" or something along those lines. I completely disagree with that, he has been here for Jack but he has also gone out of his way for me on numerous occasions and I think it might just be a case of the old saying "he who protesteth to much...", we have cried together, had some very in depth discussions, he has taken care of me and worried over how much medicine I have had and when it's next due and won't let me pick up anything heavy and numerous other quite caring and sweet things,he has also cared for and supported Jamie (who is not his son), definitely not the actions of a man that is not close with his (ex wife). I sometimes wonder if he is afraid of his own feelings...anyway he has been a rock, he has been a wonderful father and a wonderful ex-husband (we are not legally divorced, he hasn't ever done that, so in actual fact, I could say he's been a wonderful husband!) LOL!!! If you're reading this David, try not to burst a blood vessel but I know you care about me quite a bit my dear and there is no need to hide it.

Okay back to my story. I was informed from the moment I opened my eyes after the surgery, that they couldn't remove any part of the tumor because of the size of it, where it was and what was entwined with it, my surgeon, Craig, was there waiting for me to awaken and he told me right away that the operation did not go ahead as planned, he actually said to me "it would have finished you off, sometimes the toughest part of being a good surgeon is knowing when not to cut." Those words rang strong and true. It was an incredibly difficult decision for him to make and I know he and his colleagues deliberated for several hours about what to do and I know that he found that he really didn't have any choice, I would have either died or ended up completely paralyzed. This was really tough on him as we had met several times previous to surgery and had quite a repore going, he was not all that much older than me, he knew that my youngest child had only just turned seven and he cared about me, I sensed it and now having had the surgery and spent the time that I have in hospital I know even more that he cares about me. So, I was informed right away and even though I was very groggy I managed to take that in right from the get go and keep it in my mind for safe keeping as the tears poured down the sides of my face. I appreciate that he told me straight away, as I think it would have been worse to be left believing everything had gone okay. I was taken to ICU and extremely soon after that my mum and sister arrived and they were fantastic in helping take care of me and making sure that the doctors took good care of me and didn't leave me lying in pain. I have had such bad experiences in the past that this was one of my main worries and I had been quite terrified about it leading up to the day I had to go in. However, all went really well in that department, the staff were wonderful and whether it was because my sister was like a Rottweiler looking over me I don't know but I know she stood there offering me ice and wiping my lips with it because I was so dry and wasn't even allowed a sip of water but I could suck on ice. Anyway I remember looking at my sister as the tears again rolled down the sides of my face and saying to her "there's nothing they can do, they closed me back up." She looked so sad and I followed her gaze over to where my mother stood on the other side of me and she looked like she aged about 10 years on the spot, honestly it was such an enormously, intensely sad moment that we were all in together, we all knew what the implications of that were and it hurt so so much. We eventually moved past that as doctors and pain specialists and any number of carers surrounded me and were busy doing this and that, the moment evaporated but it stayed in my heart and mind as these moments often do. I then had to spend 10 days in hospital, well over an hour away from those I love, pushing myself past the pain of surgery in order to become strong enough to get home to those I love. I must admit though that the surgical pain was absolutely nothing compared to the nerve pain that I go through each day. Whilst I was at Peter Mac I met a lovely lady by the name of Julia who was in charge of getting me out of pain, the majority of it anyway. The surgical pain was almost a pleasant surprise because I was so scarred (literally as well as physically) that I was terrified that I would be left in agony and that my body was too weak to handle anymore pain. The nerve pain I have been suffering has been so severe that the surgical pain really didn't equate to much at all. Don't get me wrong, I'm not super woman and I was very glad for the pain meds to help me heal but it was no where near as bad as what I expected and I am sure that is because I am so used to excruciating pain that it makes any other pain seem so much less. There is always a silver lining!!! Of course, whilst I was there I still suffered the cancer (nerve) pain each day and this was the real challenge to overcome because the pain meds I'd been on at home, although strong, were just not strong enough to hold back the pain of the tumor pressing on my spinal nerves. Julia tried a few different things, each attempt though took at least 24 hours which was very frustrating as I wanted to just get home to those I love. Eventually we seemed to find a mix that was okay and as long as I used a heat pillow in conjunction with the mix of pain meds, I could bear the pain, so I was allowed to go home. There was the proviso that I would continue working with Brian (my Pain Specialist) at this end of town and he would be in touch with Julia regularly discussing where I was at. Anyway, I get home and of course the nerve pain attacks as it always does every 24 hours, I took what I was advised to take and it didn't hold back the pain near enough. I put up with it for approximately an hour and then made an executive decision to up the medication by 30 mls, it worked thank fully! I will, of course, let the doctors know that I have done that and I think that they will be very glad that such a small amount extra has made such a large difference. I know that things will change in regard to my pain needs as time goes by because of course the tumor is going to continue to grow and probably touch other nerves or different parts of the nerves so the medication will need to be adjusted again but for now it is holding the pain and I am so happy and relieved. Oh, I forgot to say that with that extra bit on board there is no dizziness or 'high' (unfortunately lol), or any problems focusing or walking etc, so it truly is a great solution at this point.

Anyway, I will finish off now by just saying, once again, thank you so very, very much for all the support and love you have shown me, it is just incredible and I am so proud to be a part of such a wonderful 'blog family' I have another post coming soon, this is one to just let you know a few of the details, the next one will focus on feelings I think. Take good care of yourselves and each other. xxx

48 comments:

  1. It's good to know that you are surrounded by such caring,loving people.

    Positive energy, as always, being sent your way.

    Blessed Be.

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  2. Jen, It's so good to see you post.
    I think of you everyday and check your blog several times a day.
    Jack must be thrilled to have you back home.

    I admire your strength and determination Jen.
    Hugs,
    Dodie

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  3. So good to hear from you dear Jenni. I have missed your sweet voice. buckets of love
    meg

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  4. God woman, you rock!And it seems that people you thought did not care much just adore you...Pink blessings upon you!

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  5. Sweet Jenni,
    So good to know from you! David was great informing us about you, too.
    You're always in my thoughts and prayeres. Love to you all.
    Bete

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  6. You are so strong. And your family has rallied beautifully. Thinking of you from Canada.

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  7. Dear Jen
    So glad that you settling in to being back home - I know that the boys are happy to have you back. Keep strong and go bless
    Nicky from Canada

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  8. So glad you are back home where you belong with your sweet boys. I hope you can keep that pain under control and enjoy all the beauty and goodness around you. TAKE CARE.
    Lynn in Texas

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  9. You are an amazing woman. When I read your posts, as sad as the subject matter may be, there is always a positive and uplifting tone. You are truly an angel and a inspiration to us all.

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  10. Lucky David and Lucky Jack. You're amazing!

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  11. I so agree, there is no place like home! Another quote I like along those lines is, "The very best place to be is in a loving family." I am so pleased to hear that your family is showering you with love. Soak it up, girl!

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  12. How do you do it?
    Whenever I read your words, this massive wave of goodness and gratitude wash over me... you reach right through...

    Much love and prayers, as ever...
    peace
    -Erin

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  13. Hi Jen,

    I am so glad that you are back home and surrounded by those you love...
    I agree that your David sounds like a wonderful guy. I am thinking of you always and sending you positive thoughts.
    Thanks so much for visiting me the other day! It made my day!
    Annie

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  14. I'm with you - I think David protests too much too. Not every "ex" would take the time off to be there for you all - he's a treasure.
    I happy you are home with the family - city hospitals are such a long way away.
    Take care and talk soon,
    K xxx

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  15. Jen - Sad as your news is, I am glad you're able to keep the pain at bay so you can enjoy your family. We are glad to have you back.

    imstell

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  16. jenni, i am so happy you are settling in, i have truly missed you and hope to be hearing from you more every day! God bless you and your sweet family !

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  17. Hi Jenni ~ I have been checking your blog everyday to see if you had a new post since the one when you first got home. I can't tell you how thrilled I was to see you back today!! You made me laugh with your comment about David!! I will continue to send healing energy your way. You have a brilliant attitude about things which makes me smile. You have no idea how loved you are by the blogging community. I live in New York and I feel like I know you like a good friend. Someone I'd like to sit and have coffee with!! :) My thoughts and prayers are with you always. ~ Wendy McDonagh-Valentine

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  18. I love your 'executive decision'! Way to go you!! Love and joy and caring and all things wonderful...my wish for you!

    Cindy in Canada

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  19. Hi Jenni - So glad you are home and have made the "executive decision" to up you meds a bit for pain control. Glad to hear they're working to take the edge off for you. Happy you can be with Jack and that David "bellied up to the bar" in caring for Jack, Jamie and you (and Otus)! Your friend in west Michigan, Sheila

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  20. You are such a trooper, Jenni! I'm glad you are home, where you are more comfortable. I'm also so very thankful for those people in your life, taking care of you.

    XOX,
    Danielle

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  21. Jenni, I don't know how you do it! You are truly amazing! Sending lots of prayers your way!

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  22. I too am sending you good thoughts and praying for you.

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  23. You write with such grace. I await your next post, and send painfree thoughts...

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  24. It's so good to hear from you sweet Jen. I've missed you so much. I've always known you were an amazing person, and you never seize to amaze me. You continue to remain my biggest hero. Sending love and more love.

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  25. Glad you have found a way to manage your pain and that you are home with those you love most. Thinking of you and wishing you the best

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  26. Thank you for keeping us updated with your story Jen - so good for Jack and Jamie that you are home and I'm relieved you have a pain solution - peace to you.

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  27. Sending love and prayers from California. I'm so sorry for your pain, Jenni. Know that you are loved...

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  28. I am reading this and I have tears welled up. It's 1 a.m. and I have to find sleep.
    But the part about you telling your mom and sister. Well, I am sure it is terrible for your mom to think of your pain. and I don't know why or how this is happening.
    I know that God has given women and moms amazing strength.
    There is sadness in my heart to read your words. I don't want to say it for fear of bringing you down.
    But I want you to know someone thousands of miles away is thinking of you and has thought of you often in her prayers.
    And all I can offer is my heartfelt prayers.
    May God keep your pain at bay and let you enjoy each sunny moment. Amen.

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  29. another echo from blog -land. Hope you are feeling stronger each day. you are always in my thoughts x

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  30. Jen
    I often come in and check up on you, sometimes several times a day. I am happy to hear you are home again with yr precious babies. Am sending all the cyber Love and strength that is possible on the www. Be Happy and Be Strong my friend. You are a very loved woman who has impacted on so many lives. Thankyou for coming into mine my friend.

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  31. Hello Dear Jen,
    it is so hard to read all that you are having to deal with but there is also an underlying cheerfulness and smile that seems to emanate from your writing. I pray for love filled days for you and your sons and moments where you are bursting with laughter and enjoying big warm hugs...
    peace to your heart Jen,
    blessings,
    julia

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  32. You're an inspiration! What worries do I have, when I read your story....
    May you have peace, calm , and love...and "goodness and mercy"

    Yvonne

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  33. I don't know you but you have touched me,
    I think of you often.
    I wish for you,
    I worry for you,
    I cry for you,
    I cheer for you,,
    I care.

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  34. Thank you Jenni for the most kind, thoughtful and meaningful comments on my blog today. I was here yesterday reading this post and just didn't have words to say, but very strong feelings nevertheless.
    You are so amazing! I know you hear that all the time here, but you really are. To be going through what you've been dealt and to still be so thoughtful, kind, warm, caring and not angry, bitter or cut off from the world...I think you are such a gift to this world and think your views on this life are so incredibly clear and in perspective.
    I wish you comfort, warmth, calm and love Jen.

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  35. You are my hero Jen. I can't believe you are cracking jokes despite what you are going through.
    I'm so pleased to see that you are home again, surrounded by loved-ones, comfort, good food and good care.
    Love as always to you
    Wx

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  36. I'm glad your family was there for you in the hospital. And your surgeon sounds like a wonderful person to be there with the truth when you woke. Take care of you.

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  37. tears in my again as I read about your strength and determination...you are amazing !

    hugs, thoughts, love, concern, worries and prayers being sent your way...xoxo

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  38. oops....duh !..of course that was meant to be tears in my EYES....see, I couldn't even see well enough to notice I left out a word !!!

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  39. Wrapped up in love and light, that's how I'll be thinking of you all.

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  40. Welcome Home Jen! I've actually tried to leave you a comment a couple of times, and I got errors...but I think it was on my end...
    I'm so glad you are home, and I'm also glad to hear that you were able to tweak your meds to ease your pain. Jack must be so happy your home. You continue daily in my prayers. Put everything in God's hands....
    Hugs,
    Rose

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  41. I'm so glad to come here and read your post. It must be such a comfort to you to be at home again, and with those you hold dear.

    I'm glad you have found the best solution to pain control, and I pray that they will continue to provided some relief.

    You are always in my prayers, dear Jen.

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  42. Happy to hear you are back home. Thinking of you and your beautiful family.

    Sending you love and peace from Toronto, Canada

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  43. Hi Jen-
    I have never posted before...here or any other blog. I am not even sure how I came across yours, but I can tell you I couldn't stop reading once I found it. I had to go back and read from the beginning. What a story - your strength, sense of humor and love for your boys is so inspiring to read about.
    I will continue to follow your blog - praying for you and your boys every step of the way. I just had to let you know how much of an impact your story has on us readers.
    Take care...
    Many thoughts and well wishes from USA!!

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  44. Hey Sweetie,
    have been thinking of you constantly! Love your humor inbetween all the serious stuff...but then again..that is you...honest! open! beautiful!!!
    Just sending love and cuddles and 'i'll clean up after the pup'...to make life easier.

    love you and big hugs to you! Always xx

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