Saturday, 19 April 2008

Does Anybody Really Know What's Going On...

I don't think so! Well dear readers, I have had a most harrowing week. I don't quite know what to make of it all, I do know I need to get it down here on the blog and see if it makes any sense, or at least get it out of my head because it is building up in there and causing stress. Well, first things first, I went to see my Oncologist on Thursday morning. I got greeted with "Have you been a bit stressed lately? Because stress can make pain much much worse and we can't find any pockets of infection on your scans." I looked at him and I think my eyes must have thrown daggers because he actually moved back a fraction. I very calmly spoke and said "You are not going to sit there and tell me that I am imagining this pain or that I am bringing it upon myself due to stress are you?" To which he back peddled very fast indeed and started speaking to me a little less patronizingly. He fell all over himself trying to explain that no, no, no he hadn't meant that I would imagine the pain or bring it on myself just that stress can add to the pain. Well, I thought to myself, thank you for that, I wonder would you be a little stressed had you been told that you have, worst case scenario, 7 months to live, to 3 years best case? Do you think dealing with this amount of pain would cause a bit of stress, hmmm, let's think about that shall we? Sorry to sound so sarcastic but oh he really pushed my buttons. I am just getting so sick of all the contradictory and mixed up messages. Honestly, I couldn't believe my ears, it's like I am in some terrible sit com that would almost be funny if only it weren't real and it wasn't my life on the line here. Of course I'm a little stressed but let me just say that this pain is not, I repeat not, caused by stress. Yes I am quite sure stress can exacerbate pain but not cause it and certainly not to such a high level as this.

Anyway, he quickly assured me that he believes it very likely that there is an infection in my pelvis, an abscess, a fistula that remains hidden from the Cat Scan, he believes this based on the fact that my temperature spiked so dangerously high just after I had been admitted to Hospice and then again just before I left Hospice. He told me that whilst I was on oral antibiotics they would most likely not be touching the infection because the area has poor blood flow etc so they would be doing very little. He says what I really need is to go into Hospital for 10 days and be hooked up to intravenous antibiotics. Oh but wait, I do have a high risk of infection so it would possibly be better to have a pic (sp?) line put in - that is a tube that goes into the vein at your elbow, up your arm and into your chest and is left there, which means I can have chemotherapy via the tube, also antibiotics at home, also they can take bloods which I need taking very often, but mainly that I can be at home on the antibiotics rather than in the Hospital away from Jack and being exposed to germs. Anyway, he ordered another Cat Scan for me to go and have right there and then. I literally walked downstairs, got the cannula put in my vein, lay down and had the scan done. The results are exactly the same as the results from the CT I had the week previously, they can't see anything. That does not mean that there isn't anything there to be seen though. In fact, they know there must be due to my temperature spiking and various other signs of infection. So, he is now going ahead with the chemotherapy anyway. I am to stay on the antibiotics I am already on, yes, the oral ones that the day before he stated were not touching the infection due to lack of blood flow and the area where it is situated. He tells me it is very risky, as, if I do indeed have an infection (if, what a joke, he has already stated that I most likely have) then my immune system is compromised, my temperature spikes and I could even die. So I am having the chemo with the understanding that if my temperature rises at all, I am to get to the hospital as fast as humanly possible. Can you believe that? I am flabbergasted (sorry, nice old fashioned word that one) but I mean are they for real? His reasoning for taking such a risk is that I desperately need the chemotherapy as the tumour is growing and it is pressing on the nerves in my spine which is giving me agony. Yes, I know I need the chemo, I do need it desperately but I am quite concerned that I must risk my life to have it.

One of the other things that happened in this meeting with him was that he asked me why I hadn't had a colonoscopy or camera scope procedure whilst I was in the Hospital for that couple of days when I left Hospice with my temperature raging. Now forgive me if I'm wrong but wouldn't you think that that would be his job to organize and not mine. I mean I am the patient, I am sent in to hospital with a raging fever, doped up to the eyeballs on Ketamine and methadone, meanwhile my Oncologist was in the Hospital both days that I was there, I spoke with him and yet somehow he is asking me why I didn't have it done! I tell you I am very very concerned about the way my treatment is being handled. You start to wonder whether they even care about you as a person or are you just a statistic. Do these people get so very jaded that they just cannot deal with patients on any other level? I don't know the answers but I do know this, being jaded is one thing, being neglectful is another and I am starting to feel a little bit neglected. Perhaps it is time for me to move on and find myself another Oncologist. I really don't know what to do. I hear all the time that my Oncologist is one of the best, that he really knows his stuff, he is up to date on all the latest research, he just doesn't have much of a 'bedside manner'. Well, I can deal with a lack of 'bedside manner' but I can't afford to deal with neglect. My life is literally on the line at the moment and I am getting so frustrated and concerned that I have started shallow breathing. I just don't have the confidence that I am in good hands and I don't have to worry. I feel that I have to watch every little decision that is made, query it, even suggest that some things be done. All of this while I am very ill and struggling just to keep my kids fed and loved and comforted. I am not a doctor, I am not in a position to be making these kinds of decisions, I don't have all the knowledge required to make them. I tell you, it is very scary. I am glad in so many ways for this blog, not the least of which is the fact that there will be a record kept of what was going on, it is a shame I have to feel as though I need to have something to fall back on just in case he gets it wrong and I end up in trouble. Anyway my dear ones, I don't like to post too much about negative things so that will do for now I think. Except to say, I am going to try and have one more conversation with this Oncologist and ask him to perhaps allow the pic line after all. It is a nuisance to have one in place but at least if I need antibiotics really quickly, they can be given, I really don't know why he just doesn't give me them anyway, just while I have the chemo. I think I will ask him on Monday whether that could be an option.

Anyway my sweet friends, sorry to be on such a downer today, I really don't like posting about such negative things but somehow need to get them off my chest. A problem shared is a problem halved they say and I think there is some truth to this. Please continue to pray for me, it comforts me to know you all know what's going on and are there for me. I will post again today I think because I still have some lovely things to tell you about. Take care and thank you for being there. xxx.

29 comments:

  1. Oh Jen, I am thinking a second opionion may be in order here. This doctors may be "tops" in his field but he has just contradicted himself so many times and frankly I would feel neglected too. This man does not seem to have an ounce of common sense. He should be ordering these tests as a matter of course - it's not your job to organise them. You are supposed to be his patient and it is not unresonable to expect proper care and attention. I'd have probably bopped him one on the nose!
    Take care hun, love and prayers
    K xx

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  2. Praying and sending you love love love love

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  3. Dear Jen,
    Oh dear, I would have to agree with Karen. I would want to see another doctor. How inconsiderate of him to consider that your pain is caused from stress and that you order your own colonoscopy! I would research for another doctor. I have always felt a good bed side manner, along with tons of smarts, is important for doctors to have. I wonder if they just are so cold and removed. I hope you are not experiencing the pain anymore. Love and tons of hugs, Rosemary~

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  4. I say go with your instincts. I think finding another oncologist is a good idea.

    I will continue to pray for you.

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  5. I wish we could all be there for you...right there with you.
    xoxoxoxoxoxo

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  6. Just. Not. Right.

    I'm praying for you and pulling for you.

    Pain is un-cool. Hope you're getting some good pain relief along with diagnostics....

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  7. I wonder if the doctor is stuck between a rock and a hard place. We give far too much credit to doctors and modern medicine, expecting them to fix the unfixable.

    You may very well have an abscess that doesn't show up, that doesn't mean it's not there, just that it can't be seen. He can't really treat something he's not sure is there, but suspects is there. He's bound by certain rules and isn't allowed to guess. He has to prove.

    And he's right about the stress, it does make pain worse. You already have unimaginable pain and add stress on top of that, I can't even imagine how you keep going.

    The PICC line sounds like a good idea, easy access for meds and bloodwork, and he mentioned another colonoscopy, that might be a good idea too. See if they can find something. What about an MRI? I don't know if that would make a difference, if it would show up more than a CT.

    Whatever happens Jen, I hope you get some relief. Take care sweetie.

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  8. I agree - get a second opinion. Your gut is always right and if it is telling you this doc isn't for you, then he is not.

    All my warm thoughts to you across the miles. xxoo

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  9. Jen,
    I think I would talk to the doctor about your concerns: feeling neglected and the contradictions; just be very upfront with him. If you are not satisfied after that, consider a new oncologist, maybe a female? Women seem to relate better sometimes and I'm sure that would help a ton to have a physician who can relate to you as well as give you the best medical treatment possible. Go with your gut, with what you feel inside yourself is right. We women have a 6th sense for a reason!
    So glad to hear from you but wish it were better news. I will look forward to hearing some happiness too!
    (Sorry this is so long!) Take care sweet girl. You are in my thoughts.
    Kathy

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  10. You're in my prayers too, jen.
    Love and understanding to you.
    x

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  11. Horrid to have to go through a week like this! I would trust your instincts as to how to proceed. Sorry that you have decisions on top of everything else...

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  12. how confusing for you jen. and how terrible to be questioned in this way. i hear your frustration and fear.

    but i have come to trust you, so i know that you'll make the right decisions to move forward. we are here to listen and send you our love and prayers. we're still here doing that. thank you for trusting us with the difficult times as well as the moments of blessing. peace.

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  13. Jen,
    I'm glad that you're getting to the bottom of things whether it's getting a second opinion or a pic line or both. Trust your intuition - and I'm happy that you're asking the questions and looking for answers.
    Don't you worry about not being all sun-shiny for us - we're here to cheer you on thru the good and bad. Really.
    Sending you healing thoughts and keeping you in my prayers,
    Cate

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  14. Jen, sending you my warmest wishes, and prayers...

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  15. I'm afraid I've no wisdom to offer on whether to change doctors/look for another opinion. Trouble seems to be that even the best (in their field) have faults that makes them difficult to deal with. You might need to weigh up whether the good parts of what he does makes the other bits something you can work with. But expecting you to suggest or order your own tests is downright ridiculous! I hope the right course will become clear to you soon, and that the pain will be controlled.

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  16. Jen, I agree that you should voice your concerns to this Doctor ~ it shouldn't be up to you to organise things ~ you are the patient!!
    My thoughts and prayers continue to be with you each and every day.
    Take care my friend,
    Love and hugs,
    Tabitha XX

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  17. flabergasted hardly puts paid to it. It so inconceivable that a specialist could say such stupid STUPID things to his patient. it is truly astounding that specialists can't seem to show any empathy at all, and lets not forget tact. I am so sorry you have to put up with so much why you are suffering so badly.

    Take care, thinking of you always

    Leeanne x

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  18. Jen
    ok, I agree the dr does seem to have cornered himself somewhat. But do stop and try to look at this from every angle. You are right to question and most certainly have the "right" to do so, but, try not to jump to a conclusion. Do most definately ask your doctor to explain things a little more clearly. I do think that perhaps you should start a written list of things you want to know to take to your appt with him, that way you won't miss the important stuff that somehow always gets forgotten to be asked at appts. (am talking from experience on that one... always come out of appts and about an hour later do the big DOH! I should've asked about...) Maybe your mom or your older son could accompany you to your appts so that you have an extra memory there too. It is so much to take in, in just one sitting! Two minds work way better in these cases.
    Girl... slow down... just stop and breathe... watch your gorgeous son in the orchard... read... take the phone off the hook (unless its me ringing .. of course LOL) Take the baby steps that we discussed.
    Talk soon... much love
    Carmel

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  19. Thanks Karen, I know, it's a wonder I haven't 'bopped' him one, still time though lol! I think he just makes it up as he goes along and doesn't really have much of a clue at all about what I should or shouldn't be having done. xx

    Thanks Bridge, take care xx

    Thanks you dear Rosemary, I do think another opinion would be useful on this one and yes I am still struggling with the pain, when will it all end? take care xx

    Definitely thinking about it Emily that's for sure xxx

    Kim, I wish you could too, oh I would feel so nurtured and protected wouldn't I? You could all come and bop him on the nose for me (lol). Take care xxx

    Thanks toddlerplanet, all the best to you too. xxx

    Hey Deb, no he won't order a colonoscopy because the CT didn't show anything. Go figure, I don't know what the hell that has to do with anything. Take care xxx

    Thanks beautiful Nancy, looking like a second opinion it is. Hugs to you xxx

    Dear Kathy, you know what I think so too, women are just naturally more nurturing and have that sixth sense going on - not such a bad idea at all, food for thought, thanks take care xxx

    Inkberryblue, thank you sweetheart, right back at ya!

    Thanks Deezee, it hasn't been pleasant but it will get better I guess at some point. thanks for caring, Jen xxx

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  20. Dear Jen,
    Take a second opinion, I believe it will the best. I have this feeling, I don't know if i'm sure but women doctors sometimes act in a different way.
    You also have to take something to your immune system because antibiotics and chemo debilitate it more. There is echinacea pills, a natural product, that can help and some there are some herbs. I'm going to look for on the internet and send you an e-mail about it.
    Always sending love and prayers,
    Bete

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  21. Jen,

    I try to imagine how I would feel if I had unrelenting pain and my doctor's response was for me to get a handle on my stress.

    I'm so sorry you have to be in pain, Jen. But equally hurtful is that you have to deal with the insulting notion that if you would only calm yourself, you would be able to reduce that pain; that you have the power, if only you would use it.

    Hmm. Whatever happened to the Hippocratic Oath--first do no harm? While your oncologist is right-stress can amplify pain-his insistence that you manage the details of your own care and that you do something humanly impossible, which is to simply relax under the circumstances, is not only unhelpful, it's downright hurtful.

    I agree wholeheartedly with your friends here, Jen, about a second opinion. I would love to see you getting the kind of care that is as healing to your heart and soul as it is to your body.

    Much love to you,

    Jill

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  22. Hi Jen-

    Hang in there -- you are going through so much right now and of COURSE you're having stress but it's certainly not the cause of pain... and it's extremely reasonable to be questioning him at this point -- it is your life on the line and you deserve his full attention and critical thinking. I agree -- tell him how you're feeling and also definitely get a second opinion if your gut tells you to. I strongly believe that our 'inner wise woman' knows the best thing for us.

    (I'm sure all of us wish we could be there to swoop around you and help!)

    Love and prayers,
    Daphne

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  23. Hi Jen! Problems shared are halved, but I think when you share them with this many people they must shrink even more. Bit by bit.

    Share the problems here and listen to your heart and those of your many loved ones. It may be that your doctor's bedside manner is worse than usual because he's desperate to help and can't figure out how to fix you completely just yet. A second opinion is not a bad idea. Just an opinion, not a whole new doctor just yet. You could always ask a second doc to be a part of your treatment team. Might be a possibility for you that would yield a lot of results.

    BIG HUGS and lots of love,
    j

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  24. Dear Jen,

    What a shame that on top of everything else, you now have to worry about whether you are getting top notch care! That doctor should be ashamed! Someone should tip him off to read your blog and maybe then he will get some compassion, a nicer bedside manner and get his act together. As hard as it may be to switch doctors I do hope you can find someone else! Sending you hope and all my love....I wish I were there to help you in some way.

    Annie

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  25. Jen - I am so glad to see you fired up about this, as well you should be. You deserve nothing but the best care and medical advice. A 2nd opinion, or just another doc to look over your results and treatment is a good idea. You don't have to change doctors to do this - well at least is the US you don't. Good Luck!

    Susan

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  26. Dear Jen,

    Unfortunately I have found that many in the medical community repspond exactly as your doctor has when they are at a loss and cannot explain a certain symptom or problem. Instead of acknowleding the limitations of medicine and being human, (maybe this is because of the intense pressure and expectation on them for answers, which is a systemic problem), they then tend to "blame" it on stress or the patient, or some other escape clause. I am sorry this is happening to you with everything that you are dealing with, but you are strong, and you can make it through this too (even thought you shouldn't have to)

    I am part of the medical community and have seen this frequently. It is especially sad when this happens to someone who feels as vulnerable as you do right now!!

    Please stay strong, and just know that he is just another human being...and it is okay to take control of the situation, let him know what doesn't feel right, check his response, and move on if it doesn't feel right!! You deserve the best possible care, emotionally and physically right now. I too could have laughed...but didn't b/c of the seriousness of your situation, when he asked if you have been under STRESS!!! OH. MY. WORD.

    Praying for you!!

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  27. Jen, big hugs from NZ. Your head must be spinning trying to deal with all this. Maybe you should consider asking him why you didn't have the scans/test done - as you say it's his job to organise it, not yours. Maybe he is past his use-by date and you should get someone else. I ask you, WHO wouldn't be stressed in your situation???? For goodness sake!

    Sending you lots of positive vibes and prayers. Thanks for coming by my blog the other day too. Glad you enjoyed it.

    xx

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  28. Hi Jen,
    Just thinking of you again (always, actually). Hope you are comfortable and know you have tons of love and prayers coming your way. I hope you may be able to get some more opinions. You are so special and deserve the best possible care. I hope your breathing gets better too. Hugging you, Rosemary~

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