Wednesday, 11 June 2008

So Distressing....


Hi everyone, well I am more than a bit annoyed today, there I was all organized ready to go to chemo, I had already missed one session last week when I was diagnosed with a nasty infection and put on very strong antibiotics so that is why I couldn't have my chemo last Tuesday, anyway I had still had the blood tests done as I must before every chemo and I asked the chemo nurse on the phone whether I would need to have another blood test closer to the time of my chemo the following Tuesday, she said that no it would be fine I wouldn't need another one unless the previous one was bad! Anyway I got to the chemo unit and got set up on the bed ( I have a bed so I can lie down), heat pillow on my veins ready to go when in comes my nurse and says that pharmacy won't give me the stuff until I have a more recent blood test. I asked my nurse whether my bloods from last week were bad and she said no they were great. Neither of us understood why it was an issue, so my nurse then phoned my oncologist who said I couldn't have the chemo because I hadn't seen him before it. Well that's his fault, his staff booked me in to see him this Friday because he had been away for sometime. Anyway bottom line no chemo for me which is such a very real problem in that the tumor grows so quickly and even a millimetre makes such a difference to my pain levels and yesterday I felt that nerve pain come back, not as severe as it has been in the past but there nonetheless and I was so very glad that I had chemo the next day, or so I thought. So here I am unable to get my treatment for another week now, tonight the nerve pain was back quite badly, badly enough for me to phone mum and say that if I had to go to Hospice could she come and be with Jack and get him to school tomorrow. Anyway thankfully it hasn't come to that yet and I do feel a lot better, (due to quite a lot of pain medication) still the pain medication barely touched it last time so that is a good sign, however I am very scared that it will get worse within a week. I just wish I could have had my treatment and get on with shrinking this darn thing. I think I need a new oncologist too, he has just shown me absolute disregard lately in many little ways and it is not good enough, if he felt the pain that I get in he wouldn't dare put off my chemo, in fact if it was him he'd be crying like a baby (sorry but I am very angry with him). I will start looking around for someone else as of tomorrow I think, I have just had enough.

Anyway sorry to be annoyed and pee'd off in this post but I needed to let off some steam and share my concerns and fears. Thanks for letting me and thanks for being there through all my ups and downs and happy and sads and all the yuck that goes with this disease. Take good care of yourselves and each other.

PS: That photo is of a scrap layout I did of Jack a while back. I am slowly starting to get back into it, I tidied up the shed/studio last week and got it back to my little haven as much as possible. It still needs adding to and some white furniture and some nicer storage but it does me just fine, it is such a lovely, calming place to walk into and work in (if you could call scrapbooking work). Okay, love you, bye for now J xxx

28 comments:

  1. Oh Jenni-I am so sorry to hear of this. What a drag that your oncologist is so unresponsive. I completely agree you should look for another. This kind of run around is just so frustrating. Hang in there sister. I am thinking of you and loving you madly
    xo

    ReplyDelete
  2. Grrrr! That makes me so angry, too. They, of all people, should know the importance of staying on schedule for your treatments.

    I pray that the pain stays under control until your next treatment.

    ReplyDelete
  3. Oh, Jen. Hang in there.

    I hope you tell the oncologist how completely annoyed you are and how completely irresponsible he is.

    Thinking of you in Colorado.

    Emily.

    ReplyDelete
  4. Oh honey. I am so sorry to hear that you are dealing with medical system stress on top of the obvious. I will keep you in prayer.

    ReplyDelete
  5. Poor Jen! I'd be steaming mad too! I'll be praying you'll resolve the Dr. issue and about the pain. So sorry you have to deal with this on top of everything else. SHAME on that doctor!

    ReplyDelete
  6. That is so disgusting! Why can't these professionals understand how these decisions effect people. I'm so sorry you have to wait and I hope that the pain stays at a manageable level.
    I love your scrapbook page...I scrapbook every day too. Thanks for sharing it with us.

    ReplyDelete
  7. I would be steaming as well. I hope everything stays in the manageable range for the next week! I wonder sometimes what doctors are thinking (or not).

    That page of Jack is great! You are very talented indeed.

    Love to you,
    Danielle

    ReplyDelete
  8. Please get another doctor!! I have been reading your blog for a while and I get encouraged every time I read it. You are such an inspiration to me. No, I am not sick like you, just a human who complains too much. I pray that your pain will not be bad until your next appointment.

    Hugs from Nancy in North Carolina

    ReplyDelete
  9. Jen ~ you should definitly get a different oncologist ~ this person sounds like a real prat (excuse that description, I couldn't find a better clean word!!!).
    Keeping you out of pain and you getting the treatment and care you so rightly deserve ~ is what they should be interested in!!!
    I pray that everything will be ok next time and you can have the next round of treatment.
    love and hugs to you ~ Tabitha XXX

    ReplyDelete
  10. Hi Jen,
    This makes me sick! That your oncologist would not insist that you go through with the treatment, oh how I hate red tape - I will be thinking of you my dear. Yes, find a new doctor and tell your current one to go to blah!
    Love the scrapbook project!
    Hang in there sweetie,
    Hugs, Rose

    ReplyDelete
  11. You must be so ****** off. His attitude stinks. Is there someone you can transfer to - or at lest get another opinion. His being away should not interrupt your important treatment schedule.
    If the pain is too bad - please go to Hospice. I wish I could do more for you.
    love and hugs
    Karen xx

    PS love that layout!

    ReplyDelete
  12. Oh Jen,

    you really need someone competent and compassionate in charge of your care!!! Grrrr - you don't need to be extending energy on worrying about OTHER people's jobs right now - it's your job to rest and recover - THEIR job to get their bloody act together. HOw frustrating for you.

    Perhaps your mum or someone who doesn't mind being aggressive can step in and play devils advocate for you - get someone taking notice!!!

    Anyway, I can understand your anger, makes me cross just reading about it. Hope things get better and that the pain doesn't get too much.

    Thinking of you.

    XXX

    ReplyDelete
  13. I'm sorry to hear that. You have every right to be angry. I hope that the situation will be corrected immediately and you'll be back on track with chemo.

    Positive energy being sent your way. :)

    ReplyDelete
  14. you go girl, you take charge and get rid of him and get yourself a doctor worthy of treating you.
    i can't believe they would put you through that! i mean really. that makes me mad too, see the smoke fumes coming out of the computer.
    anyway, i hope you are not in pain, sending prayers and lovely thoughts your way - just hang in there. we're here for you. and by all means, you can put your anger in ALL CAPS for emphasis or rant and rave at your will. we don't mind.
    with all my love, from one sister to another...

    ReplyDelete
  15. Jen, trust God with this issue. Psalm 91 is an AWESOME passage to meditate when we're in any kind of hot water. He IS our "Great Physician". My prayer for you that God will show you mercy and give you PEACE until you can receive proper treatment. (I REALLY want Him to completely erradicate ANY cancer in your body so you can be HEALTHY again!!!!!!)
    And send you the most perfect doctor with new ideas to help achieve that plan. :D Try not to get too discouraged, my friend. You are praying to The Great I AM who spoke our universe into existence!!! He has no limits!!!
    Hug and a Smooch,
    kathy

    ReplyDelete
  16. You are your own best advocate! Good on you for taking your care seriously. I'll also be praying that you find a doctor who can give you good care... there are some things you just can't teach in medical school.

    Love xo

    ReplyDelete
  17. I could send you an email calling your oncologist all of the mean, nasty names (complete with curse words) that you are too gracious to use here. Just let me know. I'll let him have it! Just for you, my dear! [read that with a wink and a smile]

    Seriously, more girl power to you. I'm trusting the Universe that you'll find a better doctor soon. You deserve someone who will really help to take care of you.

    ReplyDelete
  18. Dear Jen,

    I totally agree with (and thank her for her ability to say it so well) kat-in-texas. I, too, am praying for God to lead you to the perfect doctor for you, AND for the Great I AM to completely heal you. God has a purpose for your life and he will not abandon that purpose, whatever it is. He is working it out even now. And you are using your ability to bring people to the core of how you are doing - of being crystal clear in sharing just how things are. That's very difficult for so many of us, but it seems to just flow out of you.

    There is a verse in Jeremiah that says, "I am the Lord, the God of all mankind. Is anything too hard for me?"

    Here's a soft little squeeze and a kiss on the cheek!
    Nancy

    ReplyDelete
  19. sending hugs. hoping for the best new doctor, and soon.

    xo,

    SL

    ReplyDelete
  20. Go ahead and get angry. You deserve better treatment. You are fighting to make yourself healthy again. Listen to your instincts - if you think you need a new oncologist, don't hesitate.

    ReplyDelete
  21. Unbelievable! Good for you for venting and for knowing when someone is not giving you what you need! Oh, I'd love to give that doctor a piece of my mind. Amazing how easy it is to forget sometimes that we are all human beings and need to stop and pay attention to one another. Sending you much love from California.

    ReplyDelete
  22. Don't blame you for being pissed!! I would be too. And I agree find someone who seems to have a bit more understanding!!
    Hope the pain remains tolerable!!
    Nicky from Canada

    ReplyDelete
  23. Dear Jen,

    I too am sorry to hear of your pain and the foul up with the chemo. I really hope you can find someone new...

    Thinking of you...

    annie

    ReplyDelete
  24. Dear Jen—You have every right to be pissed! And to change doctors. Perhaps your doctor's callous behavior is just leading you to the one who can help you more than he can. Trust in that, our dear friend. And onwards! Sending love and hugs and prayers for you every day.

    ReplyDelete
  25. Ah, sad to hear you not feeling so well again, Jen. But good to hear that you have been able to do some scrap booking..it must be fun!

    I have tagged you on my blog today...if you feel like it and have time! I have visited your blog, from John Michael's blog several times. Hope you are feeling better soon..praying for you!

    Annie

    ReplyDelete
  26. oh honey, I'm so sorry this has been so frusterating.
    You have every right to be irritated!
    I think considering a new oncologist sounds like a good idea. At least looking around and exploring options.
    I am here, as always, thinking of you.
    I love you my soul sister,
    Bella

    ReplyDelete
  27. If only these "powers that be" could walk a mile in your shoes, some understanding on their part might happen.

    So sorry you had that happen.

    ((Hugs))

    ReplyDelete