Sunday, 12 July 2009

Ooops...

Hi everyone, you know I don't even want to type this post because it is just so depressing but I want to let you know where I'm at, even though I can hardly believe it myself. I have asked myself this question before "What if, in order to be pain free, you had to be paralyzed? Would the trade off be worth it?" My answer was always "Yes." I thought that to be completely pain free would be well worth it. I would still have some quality of life I thought, I could still get about, there are a huge number of places you could go that have wheelchair access, I could still read books with Jack, watch movies with Jack, talk with Jack - do lots of things with Jack (Jamie too but he is not quite so needy). The bathroom, toilet thing kind of bothered me but I thought to myself there would be ways of dealing with that, others manage and so would I. So in my mind, I had asked the question and answered it to my satisfaction. Okay - that would have been all good and well except, let me tell you what has really happened.

I went into Hospice, as you know, to have this procedure done. I had to sit on the very edge of the bed, the Doctor had a bright lamp brought in to the room, he also had a nurse and a registrar in the room. I have had this procedure before so I was feeling quite confident that all would be well. I was given a local anesthetic and then I could feel the, by now familiar, pushing and probing, it doesn't hurt but it feels a bit yuk. Then I could feel my left leg go numb, I felt a sort of spasm in my left thigh, it didn't I hurt just noticed it as I hadn't experienced that feeling before. Anyway, the procedure was over within 10 minutes. I was to stay sitting up for three to four hours, not straight up, I was leaning back against pillows and quite comfortable but felt extremely heavy in the left leg but it was very early on and I told myself to wait until morning and then assess it. So, I went to sleep, once I was able to lay down. I woke in the night and had to take some pain medication, not a lot and then I decided I would get a cup of tea as I felt fairly wide awake, this was when I really noticed how very heavy my left leg was, I went to stand up and it sort of folded in on me somewhere just below the hip. I looked at the nurse, she looked at me. Not good. Well we decided that it does no good whatsoever to panic in the middle of the night and we also talked about how it was very early on in the procedure so maybe things would sort themselves out. I guess I should just pause here a moment and tell you all that the pain I experience is in my lower spine on the right and all down my right leg. The tumor has compromised the sciatic nerve, well a whole mess of nerves but this is the one that causes me such excruciating pain. So basically my left leg has never been a problem.

Well morning comes and I am unable to walk unaided. The 'procedure' has numbed my left side beautifully. Well, with my usual optimistic nature, I accepted this, I declared that as long as the pain had stopped it was worth having to use a (I don't actually know what it's called but it's basically a frame on wheels, it has brakes and a seat that you can turn around and sit down on if you are tired, you see the elderly with them mainly.) walking frame(?). We all agreed that it was a reasonable trade. Now I do want to make clear that I am not completely paralyzed, I am numb and need support to walk around. Anyway, I am homeward bound and all is well as I have still not experienced any horrid pain. I had a quiet evening at home, Jack was at his Dad's place and so was Jamie so I snuggled up on my sofa with some movies and promptly fell asleep. I woke at midnight to terrible pain all the way from my low spine on the right and all down my right leg. It was just horrid. I used everything that I could safely use and couldn't get the pain under control for five hours. During that time I was sobbing, trying to warm up heat pillows and take medications all whilst trying to maintain my balance with the (blank, insert whatever swear word you like here blank) wheelie frame thingy. So, we come finally to the problem at hand. I am now unable to walk unaided and I am still able to go into excruciating pain at any time. To sum it up bluntly....it hasn't worked. I don't know why it hasn't worked this time. Of course this has taken place on a weekend and it is nigh on impossible to get hold of any medical specialist on a weekend. I did manage to get over the phone orders to hook my ketamine driver back up so the district nurses that come to me were able to do that thank goodness but as far as answers as to where do we go from here, I will have to wait until Monday. As you can imagine I am quite upset because I know that once you have injected that medicine into the spine, you can't take it out again so it will have to stay there until it runs out (which it does thankfully) in a couple months time. Not only do I now have the heartbreaking problem of not being able to get around unaided but it hasn't worked on stopping the pain. Basically the drug affected the wrong nerves. I don't know whether it is a mistake by the surgeon that did it or whether these things happen when you have procedures like this. As I said, if the pain was stopped and the pay off was being unable to walk unaided then I would still have chosen to have the procedure but the way it's turned out is just horrendous.

So my dear friends, I am sorry to be bringing bad news and I know you will be sad for me but I will be okay somehow. I will not panic until I have had some feedback from the surgeon as to whether there is anything that can be done. If I have to become wheelchair bound, I will deal with that as long as the pain is stopped. I cannot deal with that pain, it's just not humanly possible and I don't want to be drugged out of my brain either. Honestly, it's not the cancer itself that gets you in the end, it's all the complications that come from it, like the blood clots and now this. I guess I am coming to the end of the road and yet I still look healthy, I still feel as though I have a lot of life left in me, it's just trying to manage all these issues that come along with it. Anyway, I will keep you updated and informed as my journey unravels. Jack has since come home, it is Sunday morning here in Oz and so it is lovely to see him, he has had a wonderful time over the school holidays, his Dad took him to the snow, his cousins are over from Indonesia (long story but they are living in Indonesia for 12 months - their father is a Flying Doctor) so they all went to the snow together and had a blast I am so glad. He also went to the Museum here in Melbourne and learned all about Pompeii and the volcano and he really took it all in because I heard every detail. He also went and saw Ice Age 3 which was released here for the school holidays and he went in a Leggo competition (which he didn't win) and just had a good time all round for which I am so very grateful to his father. Oh he also got the new Harry Potter game for the Nintendo Wii so he has been loving playing that. He is mad about Harry Potter, just loves anything at all to do with it, he wishes he was a wizard the little darling. I remember when I was his age I loved Samantha in Bewitched and I wished and wished that I was magic like her. It's funny isn't how the different generations still love magic and enchantment and spells.

12 comments:

  1. I'm so sorry, Jen. I hope you get this latest complication fixed asap. Hugs, Debbie

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  2. Ah, I so wanted to be Samantha as well! Or Tabitha. I would have taken either.

    Hang in there. I'm hoping the pain specialist will have some more tricks up his sleeve.

    Much love to you.

    Danielle

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  3. Lets hope the pain specialist has an answer for you. Please let me know if I can do anything.

    Love and hugs
    Karen xx

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  4. Lets hope the pain specialist has an answer for you. Please let me know if I can do anything.

    Love and hugs
    Karen xx

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  5. Ugh Jen you poor thing. I will be praying that you can have some answers tomorrow. Stay strong and keep the faith!
    Hugs,
    Rose

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  6. Bummer! I will pray even harder for your pain relief. The important thing is to control your pain. Please let us know what you learn.

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  7. Oh.my.word! How very frustrating when things don't work out as we hope. I'll pray specifically that the doctors can take care of the right nerves to relieve the pain you're having.

    Hugs to you sweet friend!
    Kat

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  8. Oh Jen, I am so sorry to read bad news this evening. I will keep praying for your renewed comfort.

    I'm with Jack. I love Harry Potter, as well. Thank you for keeping us updated.

    Thinking of you.
    Emily in Colorado.

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  9. Oh dear Jen, I really hope and pray that they can hit the right nerves and get your left ones working again. You have such a marvelous outlook and great attitude - it's truly inspiring! - and probably sooo helpful when dealing with all that you have on your plate.
    I wanted to be Tabitha too... such fun! I'd wiggle away your pain with my nose, that's what I'd do... that and end world suffering, etc. ;-)
    Keep us posted on how your meeting goes today -
    Best always,
    Cate in California

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  10. Dear Sweet Jen
    I hope that the surgeon can get this resolved for you very quickly. Hope that you start to get some feeling back on your left side and also that they can get the pain under control for you. My thoughts and prayers are with you and if anyone can do this, you can!!!
    Keep believing and praying - I am doing that for you!!
    Nicky from Canada

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  11. So sorry to hear this latest setback, Jen. It is amazing how positive you can be in the face of such adversity. I think a lot of people could learn from you and how you are handling your experience with cancer and such enormous pain. You are a beautiful soul and I wish you only the best. Thinking of you today.
    Johanna

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  12. Hi Jen, sorry to hear you are in so much pain. I hope the Doctors find some answers and you are pain free soon. Thinking of you, much love, Suzanne.

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