Monday, 24 November 2008

Good News and Other Stuff...

Yep! Good news! I rested with my feet up for four hours at a time and then was only allowed up for a very short time before putting them back up again for another four hour stint. It was tough because I am not good at sitting/laying still, however, I managed it and it really did me the world of good. My feet, because I put both of them up as the right one was looking almost as swollen as the left, my feet are both almost back to their normal size! Also I have slept and slept and slept! My goodness I must have been so very tired, I am just amazed at how much sleeping I've done. I can still do some more tonight though which is very strange but good for my legs and feet and, I suspect, for my well being in general.

Jack and I had some time to ourselves on Friday night and Saturday (which ended up being the day my leg went numb) but Friday night was lovely, we just spent time together and chatted. At one point he mentioned the fact that the cancer was in my lungs now as I had told him about that not long after I found out. Anyway, he said to me 'oh in the lungs, mum that's really bad isn't it? That can kill you can't it? You could die couldn't you mum?' Then he waited, looking at me and I could hear the seconds ticking by, oh what do I say, I said 'yep honey, I could die. I am starting chemo on Tuesday but yes I could die.' He looked at me with tear filled eyes and said 'oh I'll never see you again' and I said, 'yes you will one day' he said ' I don't mean in Heaven or Paradise or another lifetime or anything, I mean now in this life.' All I could cling to and what I told him was that we would see each other again somehow and that he would be safe and taken care of by his Daddy and people that love him. He was sad for a bit but I continued to watch him carefully and he eventually drifted back to playing and running around the backyard. He went to bed and to sleep easily enough but I must admit that the Saturday and Sunday there was a definite change in behaviour, he became hyperactive. Just really silly and very cheeky, very sensitive and would cry at the slightest little thing, so I do believe that it affected him and showed itself in that manner of behaviour. I just treated him gently and gave in to his demands and needs where I could. David arrived home just on bedtime on the Saturday night which was not a great time especially with Jack emotionally out of sync as he was, the two of them clash like Titans when Jack is like that because David doesn't understand and even if he does, he still won't tolerate or 'pander' to it like I will! Consequently Sunday was such a stressful day, I felt like I was walking on ice and I had to be careful how I played my cards because I didn't want to be seen to be spoiling Jack rotten but at the same time I knew he needed to be really nurtured. Things escalated and David became ugly once again - I am sorry to say that it was remarkably similar to the last time, however, just when I was thinking I really had to ask him to leave as I could not tolerate what he said to me, he came and apologized and from then on he was back to 'himself' and was lovely and much softer with Jack. I just wish things didn't have to get so angry before David got back to that place. To be fair to David though, I feel I must explain that he had his weekend cut short because of my swollen and numb leg. Both Lee and I phoned him and asked him to come home which, to his credit, he did but it would have been annoying for him I am sure as the weekend is his time to go back to Warragul and see his family and friends and just be at home, so I guess that would be a reason that he wasn't in the most pleasant of moods. Still, it does make it difficult our end!

Anyway, a friend of David's from Warragul needed Dave tonight (Monday night) as his sister had died unexpectedly a few days ago and he wasn't handling it all that well so David agreed to go and meet up with him for dinner, so Jack and I had the evening to ourselves which was just what the doctor ordered. He has had a nasty cough and cold for over a week now and came home from school coughing madly so I said to him how about we get straight into a warm bath and into pajamas and then have a really early dinner and then we will feel like we've got more time to ourselves because everything will be done? So he agreed, we did that and had a lovely night, it went so smoothly and he was in bed by 7.30pm, I read to him for about 40 minutes and he was sound asleep within 5 minutes! I think he is starting to come to terms with what we talked about on the Friday night. I hope so, I hate having to let him know anything at all about this illness of mine but I am too afraid that if I don't I will leave him without having given him time to process his feelings while I am still around which I think is so important. Anyway, I will only do what I feel instinctively because I truly believe that as his mum I do know best when it comes to that side of things, I actually trust my judgement and I think my very powerful love for him comes into play and helps me feel the right time and helps me know the right amount to make him aware of.

Lastly, I start my first round of chemo tomorrow (actually today now as I'm up so late), so I am going in with guns blazing as they say - hoping to get rid of these tumors in my lungs. I also start Avastin at $3,000 a pop as it is still sitting on the Minister for Health's desk waiting to be signed. It has been through every single test required and passed and is now, and has been for some months, sitting there waiting for her to sign it at her leisure, meanwhile people are mortgaging their homes, or losing their homes, or even worse, not able to have the treatment at all and are dying. I have been told that while I am in the chemo ward with the other patients, that I am not to mention that I am having Avastin as I could be sitting next to someone that cannot afford it and therefore has to take their chances with the standard chemo and quite possibly lose their life because of it. I hate it. I hate that the world is so unfair, I hate that I can have it and someone sitting next to me can't, or even the other way around!!! If she would just make this a priority everyone could have it, she honestly needs to get herself down to the chemo ward and spend the day there and then go back to her cushy office and see if she can push it aside so damn easily! Honestly, I get so upset about issues like this and I know there are hundreds of them and that the world just isn't fair - but I hate it nevertheless, I can never quite manage to put it somewhere comfortable and it troubles me greatly that all I have learnt during my time with cancer will not be able to be put to any good use. I just know that if I could live I would make a difference in peoples lives. I am unafraid of what anyone thinks of me, I have very passionate views on things and I'm not afraid to fight for what is right and I'd be good at it too because I am so passionate, because it comes from the heart, I only wish I had done something sooner but I didn't realize the way I do now and yet what a waste, to have all this passion and to have experienced these things that have changed who I am and the way I think and then not be able to stay alive long enough to act on them. Well, who knows, as I sit here with life pulsing through my veins, perhaps I will put this passion into getting well and maybe my body will accept the chemo really well and kill these tumors and give me long enough to get some important things done! Who knows....

38 comments:

  1. Oh, dear. Thinking of Jack coming to terms with the seriousness of your ilness is so sad. But he's so brave (I wonder where he gets that, Mum?) You're both in my thoughts.

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  2. Dear Jen - glad to hear you are starting Chemo right away - it will knock them back with your will and determination. So glad you talked to Jack in the way that it came about - just let him know that he will always have a very special angel watching over him when the time comes and hopefully that won't be for a while.
    Glad you got some quality time with Jack, how is Jaime doing?? Give them lots and lots of hugs!!
    God Bless and always in my thoughts & prayers
    Nicky from Canada

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  3. It is a lot for a little one to process - but he will, in his own way. The Avastin approval is taking way too long - a friend who has worked on the trials also says it needs to be available now. Hope it all goes smoothly today - keep fighting hun (and keep those feet up!!!)
    love and prayers
    K xx

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  4. Jen,
    It's so good to hear the swelling has gone down in your legs.

    You did a wonderful job explaining everything to Jack. He's a bright little boy.

    That is terrible that Avastin hasn't been approved. My sister is getting Avastin for her lung cancer and it's helped tremendously.

    Take care of yourself and I hope you don't get sick from your chemo treatment.

    Prayers & Hugs,
    Dorothy

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  5. Just popping in to say how happy I was to read "good news" in the title of your latest post. Sending you much love, Jenni.

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  6. Still praying for you sweet friend!

    Hugs!
    Kat

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  7. Sending hugs. I'm so glad that you and Jack had snuggle and chat time together - that is wonderful! Lisa L.

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  8. thinking of you. that was hard to read.
    it happens with me too where a fight has to escalate before it deflates. it's kind of a natural progression. he has to be patient, he simply has to. this is not an ordinary situation.
    my prayers are with you. you are a brave mum and i think you couldn't have handled it any better. and what a smart little boy you have.
    and yes, we'll all see our loved ones again. i know it.

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  9. Yeah for R&R!!!

    You said all you needed to Jack for the moment. Little things said here and there will "acclimate" him over time. He just needs to have comfort in knowing YOU WILL see each other again....your life in Christ makes that possible.

    Glad to hear you're gettin the Avastin....Thank You, Jesus! And
    I've heard our bodies heal during sleep--so get a lot of it!!!

    Praying for even the smallest of miracles!

    Hugs/Smootches

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  10. I'm glad your legs are feeling better. I will continue to pray for you as you start chemo treatment. Hugs! Ileana

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  11. Sending my thoughts, love and prayers to you Jen...as always.
    much love...vicki

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  12. Good luck today, Jen! Hoping all goes well with the chemo and avastin combo. Glad you're going in w/guns blazing - knock it out!

    I think you did a marvelous job talking with Jack about the possibility of dying. He's a bright kid and I would think he'd benefit from you talking about all the issues with him that you think he could handle. I was thinking about being in his shoes and if my mom just up and passed on, I'd be so mad if she hadn't said anything to me. There must be questions he has that only you can answer for him. I think it's great you two can talk together like that... keep up the good work - you're an amazing mom!
    Cate in NoCal

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  13. Even though the swelling has gone down can you still take some time to sit back with your legs up and relax? You can still read to Jack and talk with people but do keep relaxing....that's good for you too!

    Love,

    Cindy in Canada

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  14. You should send the link to this blog to that Minister of Health. Put a little (Or a lot of, actually) reality into his office.
    I feel for you and Jack. Remind him that he may not see you but you always be with him in his heart. Now is the time for you and all of us to make the memories.
    Healing vibes are heading to you from Nova Scotia.

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  15. Sending good thoughts and prayers, for you and for Jack. Take care sweetie.

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  16. Glad to hear the swelling went down. You're doing wonderful with Jack...take it slow. Praying that your treatment will work wonders!
    Hugs,
    Rose

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  17. Thoughts and prayers Dear Jen - hope the treatment goes well.
    Lots of hugs
    Nicky from Canada

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  18. Sending all my love your way!!
    Love and big hugs XXXXXXXXXXXXXXXX

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  19. So glad the news is feeling a bit lighter Jen. I am sending love to you all. Meg

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  20. Girl, you are my strength. I wish you could come to the USA and send some time with you. I can see us sitting,drinking tea (or whatever) and just being girls. Love to you and you are in my prayers.
    Nancy in North Carolina (USA)

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  21. So glad to hear you are doing okay. I hope the chemo blasts the cancer. And bless your precios baby. Hope you have a good week.
    Hugs ~
    Alexandra

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  22. Hi Jen,

    I have been unable to comment lately...but thinking of you and glad the swelling has gone down some. You must know that you are doing so much good by keeping a blog and journaling what you are going through. You are making a difference in people's live right now.

    Hugs,

    annie

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  23. You have already made a difference in our world, just being in it! :-)

    And little Jack...while doing volunteer work in the cancer ward for children for a few years...the biggest gift you can give him is to be honest with him. And yes, you know best when it comes to these things. I always smile when you ask for advise, cause I feel in my gut that you already have all the answers within you, Warrior Woman! :-)

    This world has to be careful when you are up and running again..you are one crazy woman!!!

    teehee!!! i love you truly, deeply, madly!

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  24. Hi Jen, so glad the swelling has gone down in your legs. It must be much more comfortable. I hope your Chemo went smoothly on Tuesday and that you are resting for the next few days. Much love to you and your 2 sweet boys, Suzanne:)

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  25. You go girlfriend! Sorry, a bit familiar I s'pose but time is of the essence! Any chance your blog can be mentioned on morning/whenever tv and a MASSIVE campaign started?! Or/And would you create a charity perhaps sponsoring treatments?! Can anything be done on a national and international level - the sky is not the limit my love!When you are gone - should you indeed go...always expect miracles! - will it not be amazing solace for your boys that their Mum's names is remembered with love and admiration and gratefulness wherever they go!? That they could take over and continue your work?! Am very very excited, thrilled you are feeling better and trust you, my friend and fellow adventurer in the jungles of time and space (please do check this out, I trust you will love it! http://tut.com/)- to rock our world very very soon! Pink blessings upon you all!xxx

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  26. Hoping you are comfortable Jen -- and having a happy day. Lisa L.

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  27. Thinking about you girl and hoping your treatments went well and that you are not feeling too ill.
    Miss hearing from you.
    God Bless
    Nicky from Canada

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  28. Jen, just so glad to know you are doing much better today. keep your feet up and keep writing to us. we love you and i live to hear your updates. i pray everyday for you sweet friend. i sent you a long email, but please do not feel pressure to respond. i just want you to know i am here. i would LOVE to have you visit me when you come to the states!! please let's make that happen!! i hope the chemo is not too rough on you. you are such a lovely beautiful person. i loved hearing the sweet little bath and early bedtime with a book for Jack. i wish you were my mommy, cus that is how i would love spend each and every night of my life :)

    hugs to you today dear friend
    shelbi

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  29. Atta girl. That's the spirit!

    Keep fighting, babe -- show that cancer what's what!

    Remember -- YOU are stronger than it.

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  30. I hope you are okay - Hugs Lisa L.

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  31. I hope and pray that everything you throw at your lungs and your legs and every other part of you takes effect very, very soon. That you are up and around and able to love those precious sons of yours will everything you've got. That you are able to keep us informed as to your progress so that we can know how to pray and which perfect thoughts to send your way.

    You inspire me more than you know, more than you can possibly know.

    Continue to rest and sleep and keep those feet up. You and your dear Jack deserve all the rest and togetherness you can muster.

    Peace to you, dear Jen.

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  32. Dear Jen
    Just thinking about you and hoping you are ok.
    Love & blessings
    Nicky from Canada

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  33. Thinking of you again today Jen. Hoping you are resting and feeling better. Hugs Lisa L.

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  34. Dear Jen
    Hope you are peaceful and full of love.
    Sending love, hugs and blessings.
    Nicky from Canada

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  35. so glad to hear from you and all your positive thinking! enjoy your holidays, all my love-

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