Thursday, January 29, 2009

Visit to Surgeon

Hi All,

I had the most frustrating appointment today with the surgeon who removed the cancer from my head!

I am VERY disappointed in this doctor and I actually don't think he knows much and he definitely never seems to think for himself in my case! I am SO fed up and certainly don't think much of him. He may be good with his scalpel but he has many faults!

The last 4 months or so I have been having trouble with the scar on my head as you all know. There is a section of the scar that is weeping and really sore and doesn't look right. It comes and goes in cycles of 2 to 3 weeks. One minute it seems really healed and a normal scar and then all of a sudden it has stuff on it and weeps and seeps and becomes real bumpy which was kind of like how the other cancer started off but a bit different. After the head and neck oncologist watching this for 4 months, and Alan and I.....I have become concerned because the cancer I had has a high rate or reoccurring on the scalp and if it gets into the lymph nodes it can spread and it can be quite agressive. Of course, I don't want to do that and after the last cancer fooled us for 12 months, I don't want anything to get bad if it is a problem. The doctors thought the other thing was nothing to worry about and it ended up being some rare tumor! I am acting quick on this just in case.

3 weeks ago my head/neck oncologist told me that the surgeon needed to see it pronto because it looked very abnormal and he wanted to biopsy it and see what was going on. The surgeon could only get me in 3 weeks later and guess what? The scar has gone through its cycle and it looks normal now. I knew what the surgeon would say. Nothing to worry about and all normal. That happened when I showed him before Christmas when there was a tiny scab from its cycle but not looking crazy like. Well......not only did he think it was normal, he didn't seem to take into account the history or my doctor sending me there. He said that he wouldn't act on it with how it looks and he would be crazy to touch me unless he had some reason! So I said, rather urgently, that what should we do then......should we make an arrangement that I call him when it goes funny again and he get me in the next couple of days so he can see it because it is quite bad and unusual. This doctor sits there all high and mighty, hand on chin like and says NOTHING! He wasn't even concerned about the scar he said. I kept trying to tell him it goes yucky and my head/neck specialist was concerned and so was I and about FA and that people with FA can die from leaving something that looks suspicious. He still sat and said nothing. I am sorry but what an idiot!

I got upset and raised my voice.....didn't yell but got real assertive and told him that he will cause me to get into trouble with my health if he doesn't check this out. That if he has no idea how to keep my body safe, then I would be my own advocate. He then said, "I am not av available to you 24 hours a day you know!". What an idiot. What a bad attitude as a doctor.....no concern, no wanting to learn about something that could make him a good doctor. Can't even think for himself. He said, "all scars hurt you know". SO I did my, "I am a nurse and a patient who is verey aware" routine which I know they hate but they got to know they are not better than me and I know what I am doing for my health. No one is gonna pull their "high and mighty" trick with me when they have no clue! I told him that I knew that scars hurt but they DON'T WEEP or BLEED like mine was. He said, "no". A simple no. I also told him that as a nurse and as a patient I have a responsibility to myself. I think that he is not seeing what could be serious and all I am asking is that we look into it. So I will call him when it happens again and he will see me. In fact, I am going to get Alan to do it. Doctors never refuse him. I will go back to my head and neck specialist in a week and tell him the surgeon is not really co-operating and he said that if it gets real bad we will get a second opinion. I don't want to be cut open. I am not surgery happy but I do want to know why my cancer site is doing this and I don't want to be stupid.

When I asked, "can't you understand what I am saying?"...he just stared. However, the nurse in with me said in front of him, "Yes, I understand what you are saying and think you are making sense.....". Praise the Lord someone understands.

I feel cross now and it has been hours since the appointment. FA is hard enough without doctors making it extra difficult!

Phew! Thanks for letting me get that out. I am so tense. I am just trying to take care of myself *sigh*

So this sagga continues. I don't like going to new doctors when one knows your history already.

Anyway, that is my update. I have to get ready for a "Meet the teacher meeting" as Isaac starts year 1 on Monday! Wow!
Love you all,
Charisse

13 comments:

Judy said...

Hello my friend, I am so sorry about the surgeon being so difficult. And I pray that you find the answers you need about the site and get it taken care of. Have faith my friend, one day this man will find out he isn't God and that there is more to learn every day. I think sometimes doctors get to where they think they know everything and they really haven't. I pray for these doctors, because so many people depend on them, and they need to remember that things change, medicine is one of those professions that you must always be open to learn more and be mindful that God is the only one that is All Knowing. I pray for you every day, and think of you always. Take care my friend, and keep strong, in faith and resolve to get this issue taken care of. Love ya!

Rebecca Rose said...

Goodness, that sounds very infuriating! I'm sorry he wasn't helpful and had that "doctor attitude" that is not appealing or helpful! I'm glad you pushed it though and stayed in control of it all. You handled it well.

Anonymous said...

Charisse, I am so sorry for your horrible experience. I will pray that all goes better for you!
Lots of Love
Krisstina

Anonymous said...

Man, how frustrating! He mustn't have a very good bedside manner... Or perhaps he thinks because he's a surgeon, he doesn't need to be curteous... I pray that the situation will improve and that you will get the answers that you are looking for.
Love you!
Leah

Anonymous said...

I'm so sorry the surgeon is being so bad. Sometimes you wonder why people like that even become drs if they don't want to really help people! Hope you can figure out what's going on soon!
Praying right now!
Romans 8:18 For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
Prayer Bears
My email address

Jennifer said...

I think doctors sometimes forget they are dealing with real people, and this isn't just their "job". It seems especially sometimes highly trained specialists can get the "God complex" the worst. Good for you for standing up for yourself! Hope all is well with it.

Anonymous said...

Hello My Dear,

I am so glad you are sharing so much of yourself in this blog. It is wonderful to be able to keep up with where you are "at" health wise and emotionally too. Gives more direction to praying. I just wanted to encourage you to keep sharing.

Love always
Kendall

Anonymous said...

You should be so very proud of yourself! Good for you! I know you are frustrated but there is a Charisse I know that would have backed down and this time you didn't! You totally stuck up for yourself and you were right in every way. Good job my Aussie friend! And no matter what he said, or how he looked at you, you didn't take his brush off. You were confident in how you felt and expressed it. Stand tall and feel strong. I am so very proud. I'm glad that nurse said something in front of him too. Maybe two people telling him will make him reflect a little more. Hugs my dear and stay strong.

Lynn said...

Only the Lord knows all the "whys"...His way is always best! Praying!
Romans 11:33-36 O the depth of the riches both of the wisdom and knowledge of God! how unsearchable are his judgments, and his ways past finding out! For who hath known the mind of the Lord? or who hath been his counsellor? Or who hath first given to him, and it shall be recompensed unto him again? For of him, and through him, and to him, are all things: to whom be glory for ever. Amen.
Prayer Bears
My email address

Katie W said...

I am such a bad friend! I read these new posts on Google reader and think I'll get on and make a comment and then I forget. :)

I cannot believe that doctor! I don't know a lot about FA, but I would think with you living with it for most of your life and being a nurse, you'd probably know what you are talking about. That is very frustrating!!!! I'm glad you stood your ground. I hope you get in during the next cycle and he can see what you were talking about and that you KNOW what you're doing. Good luck!!!
Love ya,
Katie

Katie W said...

Ha Charisse!! I don't know about the rest of the USA, but for me (and pretty much everyone I know), we just wait to see what this famous groundhog in Pennsylvania predicts. They really do sit around and wait for him to come out and if he sees his shadow, they say it's 6 more weeks of winter. If he doesn't, spring is around the corner. Isn't that pretty much the same thing?? And supposedly it's only 13% accurate. I mean really....how is it possible for an animal to predict that?! I think it's just more of a tradition than anything. :)
Enjoy that HOT weather for me!!!
Love ya,
Katie

Anonymous said...

hi Charisse :)
Just read your blog, lovely (sarcasm) dr there!.
I had an idea though, how about you grab a camera and take a picture of the scar every day as it goes through it's cycle, ensuring the dates appear on the pics, then whether it's being weepy or not they can see what it looks like and what it's doing over time and might be able to take you more seriously.
Drs don't take my FA seriously either as we've discussed in email. I think the only reason I'm going to get in within the next month aside from harassing them(even after waiting over 425 days and have 150 people in front of me) is because there' a registrar training there and the fact I'm almost out of medication probably helped push them through as well!.
~Stacey

Anonymous said...

I'm here praying right now!
Psalms 46:1-5 God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah. There is a river, the streams whereof shall make glad the city of God, the holy place of the tabernacles of the most High. God is in the midst of her; she shall not be moved: God shall help her, and that right early.
Prayer Bears
My email address