Saturday, 12 April 2008

Hello or Goodbye...

Gosh it is getting so confusing with all this coming and going. I am back home again! I think. Yes, just looking around, hmmm my furniture, my computer, my kitchen, yes I am home!

I came home last night which was Friday night here and so far I have made it through to Saturday evening. I did get a scare this morning though. I slept fitfully, had pain throughout the night, not agonizing but not easy to bear either. I tossed and turned and finally went and slept on the sofa in the lounge room. As I woke this morning and sat up I realized I was in a LOT of pain. Agony actually. Oh I was so disappointed. I just didn't want to go back to Hospice. Jack needed me home, I spent time with him last night and he was very clingy so I knew he was missing me and needed to spend some quality time with me. But the pain was getting worse. Jack was still asleep in bed so he wasn't seeing me in this pain thank goodness. Every time I have been in this amount of pain, which is quite a few times really, he has somehow been protected from it, he's either been asleep, or not with me, or something, it's really quite amazing. Anyway, I tried to tough it out but I just couldn't so I gave in and phoned Mum, she didn't answer so I called my sister who just lived around the corner from Mum. She answered and said she'd come right over and stay with Jack while Mum took me back to Hospice. We organized everything quickly over the phone, she would take Jack home with her till after dinner that night and then bring him back to me at Hospice with a few Dvd's to watch.

My sister and my Mum walked into my home at the same time (obviously we found Mum- she had been in the shower) and I grimaced at them. As we finalized a few loose ends while I puffed and panted and tried to breathe through the pain, Mum suddenly says "you have checked the driver haven't you?" The driver is the mechanism that pumps the Ketamine through the very long tube into the 'butterfly' which is a small needle inserted under my skin. We pulled the driver out and checked to see whether the little light was flashing on and off. It wasn't flashing at all. That meant it wasn't working. We phoned Hospice and spoke to Cecelia who is a darling and so very helpful, she told us to check the battery compartment which we did and found it EMPTY!

Well, the really good thing in all of this is that I was handling the pain and had been handling the pain without any Ketamine at all throughout the night. When I say handling the pain, it was certainly very far from pleasant and some relief would have been welcome but, the most important thing was, I was still at home (just) and now that we knew what the problem was, we could focus on the fact that I would be out of pain soon, which I was. We raced down to Hospice, they fixed everything up and got it running smoothly, sent me home with medicines in case of emergency and wished me all the best.

So I ended up okay but it was pretty scary being so vulnerable for a few hours. That is one of the things I hate the most about all of this, the fact that I am not okay without medication. I am not okay without someone to administer medication. I am reliant on others, which is something I have had trouble dealing with, it doesn't sit all that easily with me but I am learning that relying on other people is not necessarily a negative thing. However, the fact that my body is not okay without medicine in it is scary. I find that really scary, I mean obviously I feel vulnerable, which is not a pleasant feeling to have, but this relying on something to be physically okay is unsettling somehow. Is it because of some inbuilt gene that subscribes to the 'survival of the fittest' category? I guess I was almost arrogant in the belief that I could survive, I very rarely got ill, you know colds and flu type ill, I just very rarely got those things, I seemed to be strong, I could exercise and keep up even when I hadn't done any for a while, I just had this overall confidence that I was one of the fit when it came to survival, so this has thrown me somewhat. I often find myself thinking about strange things like, what if we went into some kind of warfare tomorrow and deliveries couldn't get through, trucks and the like, maybe petrol and gas prices go off the radar and I just can't get my medicine. What would happen to me. I would be in absolute agony within a very short amount of time. I wouldn't be one of the 'fittest' and that is scary to realize. I know I would be one of millions but it still feels odd and as though I should be capable of surviving on my own without chemicals and drugs. Without chemotherapy, I would be dead in 5 months! I mean what is that? What does a person do with that kind of knowledge. Anyway, enough already, I am home, I am managing for the moment and I will just take each moment as it comes, it's all I can do. I am reading and learning and challenging my beliefs and thoughts, thinking about things that haven't ever crossed my mind before. I am growing I guess.

Well, that will have to do for now dear ones as this Ketamine definitely messes with my head. I do feel fuzzy in the head and I am forgetful, mostly short term memory loss which is exceedingly frustrating. Whenever I stop I tend to start nodding off which can be very dangerous as I hit my head on the computer or the desk. I have promised myself that I will not get on the computer after a reasonable time in the evening, I am only allowed activities like reading on the sofa or things like that so that should I fall asleep I land on a soft place and can continue sleeping in peace and comfort. The trouble with this drug is that it keeps me waking throughout the night and it is very tempting to get on the computer and try and make the most of my wakeful hours by catching up on some emails or blogging or reading some blogs, all the things which I love to do and am very behind in. However, as wide awake as I feel at the time, as soon as I stop and sit down even for a few minutes, I find myself falling over and hitting the computer. FRUSTRATING. Never mind, I will adjust I suppose. And if I don't well then I will have to work out a plan to make things work better. Alright, take good care my dear, sweet supporters, friends, angels here on earth, you know who you are, you keep me going through some incredibly lonely and painful hours and moments and you have made magic come into my life. Where there was pain, desperation and uncertainty, now there is magic and love, hope, warmth, friendship and most importantly of all - love. Sending huge warm hugs out to all of you with my sincere thanks. Keep communicating with me, it so helps me to keep my spirits up. I will update some more very soon as I have so much to share with you. I just have to do it in small bits so I don't fall asleep and hurt myself at my desk. I have some stories to share and little events that I want to tell you about, just stuff that has made an impact on me and is simmering in my brain waiting for an outlet and waiting to be shared. Ta ta for now, love to you all Jen B. xxx


  1. No one can do everything on their own even when you are well. You do need to accept that asking for help is not a bad thing - and often just as rewarding to the person who is asked to share your journey. Maybe your couch time could be when you do your writing, and listen to your music.
    I am amazed at how well coped without your medicine - and how your mother got to the root of the problem so logically.
    Take care,
    hugs and prayers
    Karen xx

  2. Thinking of you all the time and praying that things will all be ok for you.
    With warmest wishes,
    Tabitha X

  3. I'm so glad you were able to sort out the problem with the driver and keep your pain meds up without having to go back to stay at Hospice. And so glad you have family nearby who can be called on like that.

    That's a lovely photo of Jack. Take care. Healing and peaceful thoughts and prayers going out to you.

  4. I agree with Karen--Learning how interconnected we are and interdependent we are is hard but a blessing too. What I see from the story is how amazingly well you did when you were on NO medication.
    So glad you are home with precious Jack. We will be in touch soon xo

  5. Hi Jen,
    John-Michael shared you with me, and I have been reading your blog. You are such a strong woman, and such an inspiration. Keep fighing, and know that you are in my prayers.

  6. Hi Jen - I'm sorry you had to struggle without your pain medication...and glad your mom had the thought of checking the driver to see if it was working. I read your post and was taken with your thoughts about what if there was warfare or nonavailability of fuel so that you could not get your medication. I guess it is just human nature to think about all the "what ifs" that could happen. My mom had a very progressive form of Multiple Sclerosis and was bed ridden. I remember many times hearing the fire whistle in our town go off and I would feel absolute panic...what if it was our would mom get out? I'm sure she worried about the same sort of things you do. I don't know what the answers are but I have seen first hand how other people rally to make sure our friends in need get the supplies or the rescue they need. I guess in the end we are all vulnerable but must have the faith that goodness will prevail.
    I think of you often and hope you can continue at home.

    Your Michigan friend, Sheila

    P.S. My brother and wife just had a baby boy...and his name is...JACK!

  7. Hello Sweetie Jen,
    I am happy to hear that you are home. I hope you don't have to go back to hospice much now as hopefully the pain will be limited. God bless you for your strength, courage and uplifting spirit. I commend you so much. Once again, I pray special prayers for you and always will. Love you, Rosemary~~

  8. Hello Sweetie Jen,
    I am happy to hear that you are home. I hope you don't have to go back to hospice much now as hopefully the pain will be limited. God bless you for your strength, courage and uplifting spirit. I commend you so much. Once again, I pray special prayers for you and always will. Love you, Rosemary~~

  9. Hello there Jen,
    So glad to hear from you again. You are so strong and amazing! I am so glad I found this "magic" place you so generously share with us. Be kind and gentle to yourself, okay? Give that boy of yours hugs and kisses from us all and know we love and support you from afar.

  10. independence is an illusion jen. we are all of us interdependent, woven together by both love and necessity. that's just the way it is. the level of this dependence shifts over time, but it will always be there. i wouldn't have it any other way.

    i'm so glad you found the snafu (if you've never looked up the origin of that word, you really should) and that you're back home.

    oh, and jack looks positively radiant in that photo. bless you jen...

  11. Hi there sweet Jen! What a scary time you had! I'm so sorry you had to go through such pain before finding out what had happened. Amazing!

    The other commenters are so right...we are ALL dependent on each other and that's a good thing. And we must depend on our God. What a comfort to know He is always with us.

    I'm keeping you in my prayers.


  12. Hoping that you are sleeping peacefully.

    You can pop over to my place anytime. It warmed my heart to see your face smiling up at me in the comments box.

    So glad you are HOME!


  13. "I am learning that relying on other people is not necessarily a negative thing."

    Not only is it not a "negative" thing, my Sweet Darling Jen, but it is an affirmation of all that is good in this Life! Accept, embrace, and celebrate the marvelous Heavenly Gift of Love. And let it inundate your Spirit and Soul with its comforts, joys, and peaceful tranquilities. This is Heaven's hosts speaking and acting through countless Angels of all and every description. Enjoy the symphony! It is for YOU!

    I do, indeed, Love YOU!

  14. popped over here from Emily's place at Collecting Raindrops. Praying for your continued strength and grace, and for Jack's as well.

  15. Glad you're home with your sweet boy!

    Peace and love,


  16. Hi Jen, maybe you are up at 4 a.m reading this, hope you are doing well. or as well as you think you can. love the wizard's photo!
    hey, are you going to put that cream cheese sauce recipe online that you made with that leg of lamb recently? i can't believe you are cooking. i find every excuse not to cook. lazy that i am.
    love ya. sleep tight.

  17. keeping you in my thoughts and prayers.....and so happy that you are home...spending sweet time with your dear boy....
    hugs and love to you,

  18. I have come to realize that receiving is giving and that interdependence is what is important. I have a note over my kitchen sink : ACCEPT ALL OFFERS.

    Anyway--you've been in my thoughts. Sending you lots of positive energy and light.

  19. I came by to visit this evening because of a recommendation by John Michael.
    Thank you so much for being transparent and sharing your life with us here in blog land.
    Your courage and heart is so inspiring to me.
    I look forward to many more visits with you.

  20. Hi Jen,
    I too am really bad at asking for help. Even when I was really unwell in my late teens after Thyroid surgery I managed to completely annoy my Mother, who just wanted to be my mother, with my stubborn refusal to accept that I needed help or that I was even ill.
    Another thing I admire you for is your ability to express your feelings, to admit your fraility. I wish I could.
    You are doing so well and I'm so glad to hear that you are home and coping.
    PS. I've not been in a very good head space lately, but it's nothing compared to your troubles and I am determined to drop by and see you soon, I'll ring first.

  21. Whew Jen, so glad your mom thought to check the driver - I wouldn't have and just run mad to the Hospice. Nice to have lovely folks around! Great pic of Jack the wizard ;-) too cute and I looove that he's been "busy" during the painful moments that he needn't see... something/someone at work, I do believe.
    Gosh, really interesting thoughts about life w/o medicine. I'm grateful that it's giving you relief and a fighting chance, too.
    Thanks for updating us - just don't knock your head! Can you lay on the sofa and surf/read blogs? (That's what I did while in bed for 3 months). Just a thought...
    Be well and as always, sending you love and healing thoughts and prayers from California~

  22. Hello my friend.

    I'm so glad you're managing your pain. Hope there won't be any more technical problems and that you'll be able to stay with Jack for at least a few days at a time.

    BIG HUG,

  23. You inspire me. I will keep you in my prayers.

  24. Oh Jen....I'm SO GLAD your mom checked out your pain pump!! I LOVE the picture of Jack...he is just a beautiful boy, inside and out!!! Know that I'm thinking of you and am praying that your pain can stay at a "tolerable" level, so that you can spend your time at home with little Jack.

  25. I was just reading another friend's blog. She had breast cancer a year ago and what she found hardest to deal with was the idea of her body betraying her. I think I would feel the same way.

    As for the meds, I have those worries as well. I thought I was the only one. If there was a catastrophe would I survive without my thyroid medication and my anti depressants? Funny how our brains work.

    And for you my dear, sending hugs and peaceful thoughts of strong arms holding you tight, keeping you safe.

    Take care sweetie and you're in my thoughts always.

  26. I came from Emily at Counting Raindrops. I am praying for you and especially that you will be blessed with many, many more tender moments with your son at home.

    My heart is with you.

  27. I am in awe of your strength. I send you prayer, blessings, and love.

  28. I am in awe of your strength. I send you prayer, blessings, and love.

  29. Hi Jen - just checking in myself now that John-Michael introduced us. So glad yo are getting some time at home.

    Keep going. I keep praying and my thoughts and love are with you. You are strong. And 5 months fear? BAH!
    5 months - 5 years - 50 years - 5 MINUTES. No one knows. Enjoy the moments you have. That's all any of us can do. Stop fretting till you have to.
    Love ya!

  30. Dear, dear Jen, you are going through so many ups and downs. Having to make so many decisions about hospice and medication. I am sorry to read that you are also under pressure to consider your son moving away. May you have all the strength and wisdom and grace you need to insist that he be allowed to stay with you for as long as possible. He needs you and you need him. May wiser minds prevail. You remain in my thoughts and prayers. Glad to know that your family and friends are gathering around you when you need them. I am glad that you were able to talk to Meg Casey also. What a gift you are to each other. Grace, peace, and restful sleep be yours.

  31. Hello sweet lady....glad you are home with your boy. Wishing you many pain free days.


  32. emily from collecting raindrops sent me over to sa "hi." thank you for sharing your journey with us. you'll be in my thoughts.

  33. Hi Jen,

    I have been thinking of you as always. You are one strong lady--I am glad you got the pain meds to work and that you are home!
    You are in my prayers .......


  34. I don't know what we do with realizations like this, Jen. My heart to you for finding your way through the pain and for having found a way to address the pain so that you don't have to feel the pain all the time. Being vulnerable is the strangest thing. When our son died, I couldn't get up off the hallway floor. But I also didn't know how to ask for help. Gladly I would have died there to be with him. Eventually though, a couple of magical beings came into my life: my husband and my friend Jo. Between the two of them, they helped me up off the floor and were so tender with the vulnerable shards of my being.

    I wish I could be there to help you now, Jen. And help Jack, too. Please know that though we are not physically there, I send distance Reiki to you throughout every day -- whenever you or Jack light on my thoughts and heart...