Tuesday, 26 May 2009

I Am Home Again...

Hello my dear, dear friends,

I have finally arrived home today, well, this evening at 6pm to be exact, and I have finished reading all your lovely, caring comments and just had to sit down and update my blog immediately. I know David has kept you somewhat informed in the comments section and I am so very glad he did. I have been on so much medication that I couldn't remember how to tell him to get into my blog so he could post and then I kept thinking that I'd be home and I'd do it myself and time just kept marching on until here we are five weeks down the track, well that's how long I've been away from home anyway. It was tough! Man, I've done it tough this time, I've gotta be honest. There was a time or two when I didn't think I'd make it home and then there was a time or two when I didn't think I'd ever be courageous enough to go home in case I died in front of my boys. It was awful but I will explain it to you as much as I can without making this post too lengthy.

First things first, it started with me waking in the wee small hours in excrutiating pain. I tried absolutely everything that was available to me, including injecting myself with ketamine and nothing stopped this pain. I finally called an ambulance just before Jack woke to get ready for school. Mum arrived at the same time and I got to hospice absolutely screaming and sobbing. There were times I asked them to kill me because the pain was just so horrendous. I just never knew pain could be like that, I mean I've given birth to two big bubbas and that was really bad and I truly thought in all my naivety that that was as bad as it gets. I was wrong. There is way, way worse and I wonder if there is any limit to pain actually. My pain specialist Brian, (my hero) arrived not far behind me and knocked me out cold. Thank God! Thank God for the fact that he could. When I woke the pain had passed and he had me hooked up to some ketamine and an IV in my arm so they could give me breakthrough medications through that but they still had to knock me out a few more times before they had a plan.

The plan involved a tube into my spine and I had a button attached to the drug bivipucain (not sure of spelling) which I could bolus into my spine as I needed it. It was fantastic. Knocked out the most horrendous of pain in less than 5 seconds. I felt nothing. Heaven. Problem was though that it was purely temporary, something to do with the tubing not being protocol and it being such a rare thing to do nowadays (here in Oz anyways) that they had no way of keeping it running on a more permanent basis. I didn't get right into all the technical details of it with them, or rather I did but my brain just couldn't retain what it kept hearing so I had to just let it go and trust. The final thing was to give me what is called a saddle block. So far it has worked reasonably well. It is not perfect and I still require breakthrough pain relief but only in the form of a very small amount of methadone, nothing like the huge amounts I had required previously and that hadn't made a difference. I need my heat pillows in the night and it wakes me but it is a walk in the park compared to what I've been used to so I'm not complaining in fact I am thrilled that it works so well. I go into hospital at, they think around 3 months and get a top up of the drug (can't remember the name sorry) and hope it lasts at least another three. So all really good there. It took a while to get organized and I spent one entire week with horrid headaches and nausea whilst I got used to the first spinal pump but after that was removed and the saddle block put in, all headaches and nausea stopped.

Next the real trouble started. I went home one night to have dinner with my sons and David. As I was walking up my front porch steps, I suddenly lost all my strength, lost my breath and needed to lean completely over whilst holding onto David. He immediately got me seated and held my head for me while I was sweating and struggling for breath, I actually thought I was going to faint and I told him that I was but I didn't, I just kept fighting for breath and strength. I must have felt the teeniest bit better because I told him I needed to move to the couch to lay down. He helped and I lay there for a short time and then told him I needed to go back to hospice. I just felt inside myself that I needed to go even though I wanted to be with my boys and Jack had a play to put on for me, I just couldn't stay, so David drove me back. It took a few days and I started having chest pain. The doctors put it down to the fact that I have lung tumors (tiny ones) and that being on a lot less pain medication was allowing me to feel what pain could have been there all along. This didn't ring true with me, however, I didn't know enough and so didn't have anything better to offer up. A CT was booked for the pain and also just to check on the cancer and it was discovered that I had two clots or Pulminary (sp?) Embolisms either side of my heart, inside my lungs. I was told that if either of these moved I would not stand a chance and in fact it was a miracle that I hadn't been killed when it happened which we established was most likely when I came home and walked up the steps. I was put on blood thinners straight away and my risk of death dropped significantly but for several days I was walking around at such an enormously high risk of dying, I was just so very lucky to be alive, most people just don't survive clots like these. Of course, then I had other scans and tests and they thought that perhaps one of them came from my left calf but not for sure. Most likely is that my pelvis, due to damage from the tumor, is where the clots broke off from. They cannot see where and they cannot see anywhere that looks dangerous to them now which, I don't know whether that makes me feel better or not. They were going to put in what is called an IV Filter which was described to me as something that gets put into the main artery that goes from your pelvis up to your heart. It opens like an umbrella and filters the bigger clots and stops them from getting to your heart. However, they decided that I didn't require one, oh they have a protocol and I guess it is based on finances a lot which I must ask because I may like to have it done and pay for it myself if that can happen, anyway, they can't see any immediate danger so they don't think I require one. My doctors were hoping for one but didn't think I'd get one more based on the fact that the tumor in my pelvis had compromised that main artery in some way making it impossible to do the procedure safely but that is not the case or the reason.

So, (sorry I know it's long) I am still on blood thinners which we have to be very careful with because my tumor can bleed out. When I first went on the thinners I started losing clots in the shower from the back passage (charming I know) so they had to lower the dose, so I am now on less than the recommended dosage for my weight and height but I am not bleeding so that is a good thing. All of these things can happen at any time and it does terrify me when I start thinking about it all but I had to just stop. I was getting to frightened to go home, just so frightened in general. The shock of knowing you could just stop living so quickly and suddenly was very confronting for me and I have done a lot of crying and praying and asking questions and wondering and just being absolutely miserable and then I just had to stop. I had to try and accept all of those things and then move forward and force myself to be brave and enjoy whatever amount of time I have left. Fear is not going to take from me the very things I love so much which is spending time with my boys and whilst I will be as sensible as it is possible to be, I have to get on and live my life for however long or short it is from now on. I can't hide from my boys in case I drop dead in front of them. I just can't. I can't live in misery and fear, I need to laugh and love and live in the now even more than I did before. I need to do and say the things that are undone and unsaid and try and be loving to everyone in my life so that I can be an inspiration to others not a scared little girl that hides away from the world because of fear of dying. That cannot be my legacy and will not. Brave words indeed but I am quivering inside a little. This is my first night home in 5 weeks and I am here on my own with my two boys so I am nervous but I have enjoyed being with them earlier and hopefully I will wake in the morning and be with them again before school and work beckon them and I will feel more confident with each morning that I wake up. I will leave this terribly long post here for now except to say thank you so much for your support and prayers, they mean the world to me and I truly mean that, so thank you my dear friends and I will update again very soon.

37 comments:

  1. You are such a brave woman. What a wonderful mother too. I don't even know what to say. I don't know how you are facing all of this. I guess we all will someday. I wish and pray that you can indeed live, love and laugh right now, with your boys. Make sure you do and say everything that you wish in your heart. You are an extraordinary woman. Thank you for sharing your life with me too. Hugs Lisa L.

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  2. One of the greatest blessings in my life was the time spent with loved ones that knew their days on earth were drawing to an end. Nothing puts life in perspective like death. It was a bittersweet time to be sure. I wouldn't wish it on anyone, but I wouldn't trade it for anything either. Except, of course, to still have them with me! But we were fortunate to have that time to, as you said, "do and say the things that were undone and unsaid" and to "laugh and love and live in the now even more than we ever did before". You are so wise to choose to live in love and not in fear. My prayers are with you!

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  3. Dear Jenni,
    I have been so worried about you, wondering how you felt and what was going on. You are so brave and courageous. I admire you so much for all your strenght. My love and prayers are with you,

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  4. So glad u r home......so much for one beautiful woman to endure !! Peace !!!!

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  5. It's just so good to have you back home again, and back to your blog again. I will continue to pray for you and continue to send a whole lot of love to you. May you look forward to many pain free days. Keep up your positive spirit, I'm not sure how you do it, but keep on doing it Jen. Much Love...

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  6. Jen, my heart is reaching out to you. Can you feel all of our love for you?

    My hope is that you will be able to do these things that you want. But, I pray for your pain to be controlled. I know you don't want to spend your time in excruciating pain. Thank God for the solution they have found.

    Love to you dear Jen.

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  7. I'm so glad you're home! I am very thankful that David kept everyone posted as I know a lot of people were wondering and worrying about you. I'm especially very thankful for the people like Brian. Thank God they can remain level headed and search their books of tricks to find solutions for complicated situations!!!! When in pain a minute can seem like hours...so glad you have relief. God bless you Jenny, I will keep tuned into your blog for whenever you feel like posting. I hope the rest of the week finds you resting and comfortable.
    Sheila in west Michigan

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  8. Hey, Babes, good to hear from you again.

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  9. Dear Jen,
    So good to hear from you! You're a brave girl, yes you are, and deserve all the love in the world. I'm happy to know that now you're having pain relief and it was a battle for you - it has been a huge battle. Always supporting you with love, reiki and care.
    Love
    Bete

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  10. Dear Jen - so happy that you are home, and so sad that you had to go through all that turmoil in the last few weeks. Keep your head high, you are doing amazing. Much love and laughter for you and your boys in the days ahead.
    Happy you are home.
    Blessings
    Nicky from Canada

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  11. Dear Jen,
    I have been very worried about you and check daily to see if there is any news about how you are doing. I was thrilled to see your post today! You continure to inspire and amaze me Jen with your strength and courage. What a beautiful person you are...

    Thinking of you always,
    Annie

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  12. Dear Jen, so happy that you are home. I admire you so much,you are stronger than you know. Blessings to you sweet girl, Suzanne.

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  13. Jen - I am so so sorry that you had to go through that horrible pain. I instantly sat up and paid attention when I saw that you blogged. It was like a great friend just walked through my door! When I read the comments I am astonished how you and your story has touched so many people. It is just not your boys who benefit from your wisdom and love, it is all of us here. You should be so proud of that.

    I am sending you love and hugs from Rhode Island (in New England, USA). Susie

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  14. Oh, Jen!

    What a relief to hear from you again! You are definately setting a higher standard for the rest of us when it comes to dealing with life and cancer. And you sound sooooo good!!!

    No matter how much time you have left on this earth--LIVE IT UP GIRL!!! You have earned the right and God is right there with you and your precious boys and family getting you through the toughest times (thank you, Angel Brian!).

    A big thanks to David--he's been our lifeline to you, Jen, and that was much appreciated! Take Care and take all the time in the world to love on those sweet boys who love you, love you, love you!!!

    Hug and a Smootch
    kat-in-texas

    p.s. I like your long posts!!!

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  15. You freaking rock.
    Keep kicking at the darkness, girl.
    Praying still...
    xoxo

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  16. I am so relieved you got home to your boys and have turned the corner a bit, although you have been through hell and are braver than anyone I know. I do pray that you continue to get pain relief from this new method, and that you can enjoy your days at home with your beautiful sons.

    I was so happy to see that you made it home, you have no idea... We are all praying and rooting for you.

    Much love,
    Linda

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  17. Jen,
    I started reading your blog a couple of weeks ago, and I have to tell you how I feel as though your writings have changed my life. I ended up reading all the way back from the beginning when you started. Your courage is just beyond anything I have ever even imagined. I am sure there are times when you must wonder why all of this is happening to you, such a beautiful person...you really are amazing. I am so so so sorry to hear of all your recent pain, it breaks my heart. You have truly made me appreciate so many things I'm sure I take for granted, I have to say, I believe you have made me look at at life in a deeper way, you have given me the ultimate in perspective--for that I wanted to say thank you! Be strong in these hard times. You are so loved. I am thinking about you everyday, and we have never even met.
    Rachel.

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  18. Holy shitting hell!!! I am so, so , so very glad that you explain things to us as they really are as I'm not one for mawkish twaddle. Having said that it makes me wonder at the capacity the muman being has for suffering. I genuinely find it extraordinary. I didn't think anything could be worse than vomiting your own excreta and then you tell of PVs and pain ytterly undescribable. You are quite a remarkable human being Jen and I only wish I knew you personally. Keep trucking kid xxx

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  19. By the way that should have been human - not too sure what a 'muman' is, same goes for ytterly xxx

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  20. Oh dear Jen-
    I am so glad to hear you are home. You have been in my heart. Your strength and bravery never ceases to amaze me. I am so honored to know you. You keep going sweetheart...sending you great love.
    xoxo
    m

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  21. Welcome home Sweetie! Breathing out.....nobody has to go through o much pain....my heart bleeds for you...

    i'm thinking of you...praying for you...and still jealous...my hubbie asked every now and then out of the blue how are you doing? Something I have to know? Teehee!!! He is such a sweetie!!! So concern about you...me too....eventhough we don't talk daily...you are always in our hearts and minds...we talk about you daily....of the crazy, wild, beautiful brave, amazing mama!!! that's you!!! (if you did not follow!)

    Love you Sweets! Love you lots and lots,

    and a soft and gentle hug from my hubbie xx

    PS: have to send a photo so that you can see who are hugging you so gently and loving...teehee...i'll be part of that hugging thing...teehee...love you! xx

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  22. You're home - YAY!!!
    What a rollercoaster ride, thank God for people like Brian who don't give up looking for answers. Spend your time enjoying your boys and living in the present and don't dwell on the might happens and maybes - they are out of our control.
    So good to hear from you, so many of my prayers are being answered this week.
    love and hugs, K xoxoxoxox

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  23. So very happy to hear from you, dearest Jenni, and know that your sweet, brave, loving spirit is alive and well. You are teaching us all so much. May you remain pain free and may each day be full of blessings. Sending big hugs and love, Cat B xoxoxo

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  24. You are so right, Jenni. Can't stop living for fear of dropping in front of the boys. You just go on grabbing every moment of happiness and joy with them and your other loved ones. I pray that they are able to keep your pain at bay and under control. So thankful that you are finally home.
    Ruthie from Cali

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  25. Wow Jen, I can't believe what you've been through and you have still come out fighting! Your strength and will for living is amazing! Keep that spirit...we are all pulling for you!!! Wishing you comfort, recovery and happiness.
    Kathy

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  26. I am so glad you are home and I am so sorry for such immense pain. You are so brave and so uplifting and I hope you enjoy sweet beautiful times with your boys and get to say all the things you want to say. Thank you for your genuine inspiration. I am praying for you and the boys often. Anna Katherine

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  27. Jen I am so fiercely sorry for all you've been through, but so honored to be watching your valiant fight. You have touched my life, as has your Jack, and now David. Wishing you all anything that might bring peace during this time.

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  28. I think we all live a little more fully after reading about your determination to make the most of your life, no matter how scary it seems. As always, I'm praying for you.

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  29. So glad you are back! I was worried about you.

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  30. Hi Jen,
    WOW and Ahhhhh... so glad you're home and with your boys and have this renewed attitude (well, it's always been fantastic but it sounds like when you were in hospice it did shift a bit - to be expected what with that experience and horrid pain!) - but yes, seize each day as you seem to always do.
    SO sorry you had to go thru that all and really glad you've come out on the other side. As always, with an amazing perspective.

    Kiss those boys and thank David for the updates - that was really kind as we were all so worried for you.
    Best,
    Cate in California

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  31. My prayers continue to be raised for you and your family.

    I am glad to read that you are back at home. it is great that your goal is to enjoy these days with your sons. Love on them. And let them love on you.

    Peace be with you. Have a great weekend.

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  32. Brave, Jen. I'm so glad you're home with your boys. What a relief to see one of your posts again. Warm thoughts to you.

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  33. Welcome home again, Jen. Sending you my love.

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  34. Jen, you are fantastically strong and wise. I think we could all live a bit more in the moment, no matter what our circumstances. When your boys remember you, I have a feeling it will be as a mother who laughed and loved despite it all, and that is such a wonderful gift to leave them with.

    Always in my thoughts and prayers,
    Amanda from Canada

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  35. my sweet jenny, you are so loved and such an inspiration to us all. IF i could find a way to take the pain away from you I WOULD in a heartbeat. It is overwhelming what you are facing....unfathomable. But you are facing it with such grace, depth, courage, and strength. God has you in His hands. Never forget that my dear one. I am so blessed by you....

    i love you so,
    your bff in CALI
    Shelbi

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  36. Hi Jen

    So glad you're home again. What a scary time! I was so thankful David kept us informed. I'll continue to keep you in my prayers sweet friend.

    Hugs!
    Kat

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  37. hugs and prayers and haven't written in a while, but checked in always. just didn't know what was happening. you are strong and so v. right.

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