Sunday, 20 April 2008

And On and On it Goes....

Hi my gorgeous friends, you are all so kind, I have loved reading your comments to my last post, I feel so supported. It's like a huge big hug when I read the comments. I am usually feeling really flat and then I read what you have written and I literally heave a sigh, my shoulders relax and go down a couple of notches and I feel nourished.

The latest isn't good I'm afraid, I wish I could say differently but I can't. I have had so much trouble with the District Nurses, with pain management with sleeping (or trying not to sleep). You see the Ketamine Driver is no longer keeping the pain at bay, I am needing so many breakthrough 'top ups' that if I fall asleep for a couple of hours or 3 hours, I wake up in bad pain because I slept through without taking any extra pain medication. I have been trying to deal with this because I haven't wanted to have to go back into Hospice as I haven't long been home but the reality is I can't keep going without sleep in order to keep my pain at bay, it just isn't a workable solution at all. Next thing is that in my paperwork orders that are sent home with me and given to the Nurses, it says that for moderate to severe pain I may have certain amounts of Ketamine 'top ups' to be injected into the tube which goes under my skin. Now firstly the District Nurses 'forgot' to tell me that I could even have Ketamine 'top ups' which meant I had to get by having several severe pain episodes that needn't have happened. Then they neglected to tell me that I was allowed to top them up myself, they were supposed to tell me about that at the beginning of the week and show me how to do it and that didn't happen until this morning, one week and two days after I came home from Hospice. Not Good Enough!!! By me being able to do it myself I could have prevented the pain from getting so high that it becomes ridiculously difficult to bring it back down again, so this was a pretty serious error to make. Anyway there was no apology and finally I got a nurse to show me how to do it so now I will probably be okay.

I was too terrified to fall asleep for long because I would dread the pain coming back so badly that I couldn't stand it. Talk about neglectful of them, I just don't need all these things going wrong around me, I feel so unsupported by these people I really do. Anyway my friends, I have been quite good today as I had a couple of top ups this morning and they seem to have held me in good stead. If I feel it coming back I will use one of my top up doses and hopefully tonight I will get a decent sleep. I will wake up in pain probably but at least I will be able to bring it down reasonably quickly with the Ketamine.

Also I am booked in for Chemo on Wednesday. My Oncologist has warned me that it is very risky but it is also risky not having the chemo. Because he is quite sure I have an infection somewhere due to my high temperature, he is concerned that as my immunity will be lowered due to the infection, I could be in very real danger if my temperature spikes. If it does, I have been told I must call an ambulance and get straight to the Hospital where I will be given intraveanous antibiotics. Well I must take this risk I believe because it is so important that I get this chemo into me, it is the only way to stop the pain long term because the tumour needs shrinking so that it stops pressing on my nerves. If my temp goes up high, well I will race to hospital and hope for the best. It's all very frightening though. It'd be ironic wouldn't it if I died of a high fever or something so silly like that. I am not ready to go just yet though, I haven't made the boys their cards or finished their albums or done videos for them, so I really need to be able to get through this, get the tumour down and perhaps have some quality for a time, God willing.

Okay sweet friends, thanks for listening to my ramblings again, I really need to get this stuff off my chest, it helps to share it with people who care for me, it really does. I love you all and thank you.

15 comments:

  1. Dearest Jen, before even finishing this post I stopped to pray.I pray for God to heal that infection that they are having a hard time with. Heck, I am praying for everything you are dealing with. You are the strongest woman and kindest heart I have ever known.I know you will get all those things done Jen. I believe you will be given the time. So many lift you up to Jesus each day. I love you dear girl. Always, debi

    ReplyDelete
  2. just sending you a bit of love! and Reiki vibes... miracles...k-

    ReplyDelete
  3. Wow Jen, what a trooper you are. I can't believe that you've been going for over a week without the proper pain management - I'm sitting here shaking my head wishing that I could call the director of the Hospice and let him/her know how horrid that inaction is - to let you go w/out help or information on how to help yourself - aack! It makes me crazy but thank you for sharing your experience - one day it may save me or a friend here from a similar issue.
    I really and truly hope that you feel better soon and make it thru the chemo on Wednesday without any trouble.
    Do keep us posted - as always, sending you much love and many prayers across the continents!
    Be well,
    Cate in California
    (Marin County to be precise, in case you were curious - a beautiful town just North of San Francisco over the Golden Gate bridge).

    ReplyDelete
  4. Jen, I can't believe what you are going through, you are such a strong woman, I am in awe of you. I am going to think just the very best thoughts for you for the coming week, and hope it all goes as well as it possibly can.

    Warm Wishes from Linda @ Barefoot in the Park

    ReplyDelete
  5. Sending Love, Hugs, Wishes and Prayers to you today.
    You are in my thoughts dear Jen.
    Love and warmest wishes,
    Tabitha X

    ReplyDelete
  6. Dear Jen,
    This may sound crazy, but is there anyway that another responsible adult could top you off at the right time (at the time when you have predetermined is about when your pain starts to rise again cause the meds are wearing off ~like 3.5 hours after your last dose)so that your sleep wouldn't be disturbed and you could get at least 6-7 hours without waking? If timed properly and given by someone you absolutely trust, it might be just the thing you need. Couldn't you give pemission for someone to do that for you? It is so important that, like you said, you stay ahead of and on top of the pain so that it doesn't get so bad that you can't bring it down without suffering so terribly. You also need your sleep and shouldn't have to be afraid to go to sleep lest you miss your next dose and wake up in incredible pain. I would have absolutely no hesitation giving someone permission to do this for me if I were in your condition, or administering it to you myself if I were in Australia. It just breaks my heart to think that you are dealing with this all on your own 1/2 a world away. Is there no one that is staying with you and walking this road with you? You shouldn't have to figure this all out on your own. I know that when my dad was in the hospital with colon cancer, he really needed someone close at hand to help him be his own best advocate. It is hard when you are swinging in between incredible pain and sleep deprivation ~ I can imagine that it is even hard to think. I will pray that someone in your vicinity will see your need and be moved with compassion to help you in any way you need. May this person be blessed a hundred times over. I am going to email this comment to you also, so if you want to email me back, you can.

    Ruthie

    ReplyDelete
  7. oh dear Jen,

    I really hope everyone can get their act together and get your treatment and pain management under control - it's not fair that you should have to try and manage this yourself right now! Not fair at ALL!!!

    Hopefully soon your tumor will shrink and stop causing you so much pain. Fingers, toes and everything crossed for you.

    Beckyxx

    ReplyDelete
  8. Hi Jen,
    I just read Ruthie's comment, and feel the same, is there anyone else who can help you with your meds? Can you have a nurse come to the home? I feel so badly for you and all you deal with, I can not imagine going through what you are dealing with. I hope your fever goes down soon. Sending more hugs and love, Rosemary~

    ReplyDelete
  9. Jen, my Darling ... I do hope that you convince Someone (if You can get anyone to actually focus and pay you the attention that you require [we can hope!])... to do the pic dealie for you. This sounds like a chance for you to have more control of your life and have it in the environs more comfortable (and hopefully more FUN)for You.

    You are my constant Spirit-Companion!

    I am so pleased to be able to enjoy the blessing of loving You.

    ReplyDelete
  10. Amongst other things, praying for an advocate for you.

    You beauty still shines through :)

    ReplyDelete
  11. Sending you lots of love, healing and hugs. You are such a strong soul. I am honored to know you. Be well and pain free sweet;)

    ReplyDelete
  12. As always thinking of you, and sending you lots of positive energy and strengt. I hope your pain goes away soon, sending you lots of love, your reader from Toronto, Canada.

    ReplyDelete
  13. I hate that these nurses were so forgetful or whatever it was with the pain meds. Hoping you get a good night's rest soon and that chemo helps in a big way. We won't even think of the possibility of temperature spikes and infections...okay? That's just not gonna happen, okay?!

    ReplyDelete
  14. since the first day i started reading your blog i began praying for you, and continue to do so many times through out the day.

    i pray your "hidden" infection is healed, your chemo does it's job - shrinks the tumor, and your pain is under control. i pray for your body, mind and spirit.

    you inspire beyond words. your journey - your strength - your courage has changed my life. you are more than amazing. i am in awe.

    ReplyDelete
  15. sending my prayers, love and thoughts. we are with you in spirit.

    ReplyDelete