Friday, 10 April 2009

Pain Free But Not Worry Free...

Well still pain free and am just so thankful! I am at home and have specially trained nurses coming everyday, even over Easter break, to change driver and check on me and report back to Brian (pain specialist). I have not stopped sleeping, deep, heavy, hot sleep. The kind that is really difficult to wake from and when you do you feel like crap. Nurse woke me today at 2pm thank goodness because hadn't taken all meds or eaten or had a drink since night before. Not good. Anyway she checked my driver and horror of horrors it had not been working at all since 6pm the night before! I should have been in agony by now but was panicked anyway in case pain was coming. My nurse said that it would have been here by now and to stop worrying. She fixed it and got it running, she talked with me about what to do if the pain started getting out of hand. She phoned Brian and told him what had happened so he told her to take the amount of the drug from 600ml over 24 hours back to 400mls over 24 hours. I can take breakthrough drugs if need be though and if that doesn't work then we have back up plan to go to hospital, ring hospice unit first, they will phone Brian, he will phone hospital and advise them on what to do and come and see me at hospital until bed becomes available back at unit. That put my mind at rest somewhat. Anyway, so far, so good, pain hasn't returned. I think perhaps we have passed the danger zone. A couple days ago at hospice I woke up and just felt different. I don't quite know how to explain it but I really felt lighter and as though the pain underneath all the medicine had receded but thought perhaps imagining things. Anyway Brian explained to me that everything we come up with in my scenario is guesswork. We have no way of knowing for sure what is going on. Even with scans, we still don't have a good enough idea. Some of the scenarios are - I developed an abcess inside and it finally burst. I had a huge build up of fluid around tumor and this has drained because of chemo last week (this feels like what happened actually - I don't know why I feel this but some instinct telling me this is what happened). Or tumor could have grown or shifted and there is more nerve involvement now. We do not know for sure and it is so very frustrating. I could be taking huge amounts of drugs for absolutely nothing at all but too risky to take me off them completely at this stage because the pain is just so bad if it does come back. I have read in my studies on cancer that tumors develop fluid especially in the later stages and a lot of folk have them drained so perhaps this is what I will need to have happen. If it is build up of fluid it will continue to happen so we are going to discuss this with Brian tomorrow as didn't have time today.

The other problem is financial. We were told by my oncologist (whom I have been having second thoughts about now for quite some time) that I was going on a certain plan for Avastin. Over here in Oz it is not free yet so they have different deals going, we were offered and accepted a deal whereby I have $25,000 worth of treatment and then it is capped at that figure and I can continue having as much as I need for free. Well we reached that cap last week so my Mum phoned up to try and find out what happens next and we were told the awful news that I had not been put on that plan at all and that I need at least 900mls and so far I have had 300mls at $25,000. For me to have the rest of what I need....well, you do the math...quite horrifying isn't it. None of us have that kind of money just hanging around and if I don't get the Avastin, I die much more quickly. Anyway we are going to speak to the oncologist because he has been conveniently away this week, we will see what he has to say for himself and if he does not sort this out for us then we will have to get legal help because we were not informed of what he was doing, we did not agree to that plan and he just went ahead and did it whilst telling us an entirely different case scenario. So, it is all very worrying but not much we can do now so I am going to try and put it on the back burner and worry about it after we have spoken to him.

Also my darlings, I want to thank you for you support, as always you have been so wonderfully kind and loving and I don't know what I'd do without all of you. I love you and please keep the prayers coming. Take care, I will keep you all informed.

19 comments:

  1. With so much on your heart and mind the saying,"one day at a time," sure does seem the best way for you to deal with these things! If only your friends here in blogland could carry some of your pain and burdens for you! Of course I will keep you in my prayers. Love you too, Debbie

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  2. Oh Jen I feel so bad for you having to worry about financial matters.

    As always you are in my prayers.
    So good to hear you are still pain free!

    Prayers & Hugs,
    Love You Lady,
    Dodie

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  3. Oh dear, it's always something Jen, isn't it? You should NOT have to worry about financial issues in the midst of everything -- I am praying that this ALL works out and there's some very easy explanation once the doctor returns to his office.

    Hugs,
    Lisa in Florida

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  4. Sending big love my friend...And a huge hug. Hang in there
    xoxo
    Meg

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  5. Jesus said in Matthew 21:22, "And whatever things you ask in prayer, believing, you will receive."

    "If you can believe, all things are possible to him who believes." Mark 9:23.

    Jesus said, "I am the bread of life. He who comes to Me shall never hunger, and he who believes in Me shall never thirst." "Most assuredly I say to you, he who believes in Me has everlasting life." John 6:35 & 47

    Meditate on those verses, Jen. That's where your hope lies--not in man or what a man can grant to you. It's what God will give you!!!

    Remember the significance of this Easter weekend. Good Friday being the day Jesus surrendered His perfect life and was crucified for every sinner and every sin that was and will be committed until the end of days. But on the third day, he rose again defeating death which gives us life after death if we believe and receive His grace.

    He did that for you and me, my friend, though I KNOW I don't deserve it!

    Ask it in His name, Jen!

    Hug & a Smootch!

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  6. I'm praying that the financial issue will be all worked out with no more problems. Sending you love and support.

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  7. I hope that the worries can go away with the pain... Hang in there...

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  8. Sending love and prayers, Jenn

    Love, Susie

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  9. More love, good wishes and white light from NE Ohio
    xox

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  10. My thoughts are always with you Jen.

    love
    Leeanne

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  11. Ok, I know a lot of people post here about Jesus and all that, but ya know Jen, dear old Jesus isn't renowned for his American Express card and to be honest that's what you need right now not Biblical verses, therefore if all those that stop by this site sent you $20 you'd soon have enough dosh to buy your drugs. I am more than happy to help out. Anyone else out there with me or are we going to depend on JC? But let's be honest maybe this is His way of communicating to us.... Jen let me know how I can send you money.

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  12. I am here, reading and listening and hoping as always. I know things will work out for you. Take the good with the bad, be thankful for the good and that the bad will pass. It will. Keeping my fingers crossed for you in your financial worries...
    Kathy

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  13. Hi Jen

    As always sweet friend, you humble me with your bravery. You're in my prayers. May our God surround you with His love and comfort and healing power.

    Hugs!
    Kat

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  14. Oh my dear...as always you are in my prayers. Please know God is with you! I hope all financial worries are taken care of this by your next post. Also, thank you for sharing such heartfelt emotions...I think it will help so many people.
    Janet

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  15. 'You are in my prayers' seems to be the general bloody mantra here. Can we not help the poor girl with something a little more concrete?? C'mon we can all chip in..

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  16. I think Alice Band has a wonderful idea. I would be more than happy to help out.

    Jen, we need an address to send donations.
    Even though you would never ask for anything,
    let the ones that want to contribute do so!

    Hugs, Love & Prayers,
    Dodie

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