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Brenda5's avatar
Brenda5
Member
10 years ago

I lost it. CT scan, axillary clearance

Well I lost it. After all the stress I couldn't hold it back any more and the tears started coming.
Getting ahead of myself though. Further to the appointment letter in my mail box on Friday I turned up for the appointment to see my specialist today, I thought for some answers to my questions I didn't ask last Tuesday when they gave me the shock news I had cancer in the sentinel node and needed a axillary clearance operation booked for the 7th of Dec or some answers to the chest and abdomen CT scan results from last Friday which gave my hands and feet an allergic reaction and I have been scratching day and night of blisters.

I scanned the Medicare card and it said see the receptionist at the front counter. Great, the machines on the fritz again I thought so lined up for the counter. The receptionist told me I had rang up and cancelled the appointment at 2pm Thursday afternoon. I told her this was impossible as I only learned of the appointment by letter on Friday. This seemed to upset her a lot and she got kind of aggressive, then said it must be for pre-op. I said I had pre-op last Tuesday and anyway my letter clearly stated my surgeons name on it. She made us wait at pre-op anyway and spoke to the nurse and dumped us there.

The nurse in pre-op who must have clearly had half a brain went in behind the reception counter and spoke with another nurse who also had half a brain and she called us in and said obviously we've had a glitch in the computer system and we will fit you in to see a doctor in half an hour. As I waited the tears of frustration threatened but I held it together.

Eventually we were called in by a basic Dr lady who had assisted in removing my drain last week. She has doctor on her name tag but I think they have various levels of doctor and this one must be newly qualified. She took us right past my surgeon who was standing there but he didn't even acknowledge who we even were and turned his back to some paperwork he was doing. Again he made me feel like I was the naughty child. I mean he could have smiled and said how are you going? Sorry for the mix up but you are in good hands with the lovely lady doctor but nope, we got nothing as we walked past.

In the lady doctors office she explained there was really no need of this appointment as I had my op date for next Monday but what was my trouble?

Ok that's when I lost it. The tears just started and I couldn't stop them this time. 
I said neither my husband or I had hear more than one word in three from the surgeon last week standing over us telling me I still had cancer and needed a further op. Then the nurse had removed a foot of awful drain from my chest and we were bundled off in shock to pre-op signing.

The lady doctor tried to defend herself by saying but I asked you last week if you had any questions. I said yeah if I had been let out in to the car park for 5mins for a scream and a cry and punch a few bushes I might have come back and had some questions. Now I do have some, I wrote them down.

I took out my breast journal book and asked my questions which she answered quite well for me. Finally, some intelligent two way conversation. I was relieved but worn out.

Cried some more on the car trip home, apologising to poor hubby several times but I just couldn't stop. Bad idea crying, now I have a monster headache and the Panadols aren't touching it.

PS- The CT scan showed nothing more than the last one did 18 days ago. Did the doctor even note I had already had one?

9 Replies

  • Cook65's avatar
    Cook65
    Member
    10 years ago

    Hi Brenda,

    I must say I'm impressed. All you did was cry? I would have let fly and given them both barrels with a few expletives!  Perhaps if you lifted your shirt the surgeon may have recognised your boobs seeing a your face didn't trigger anything. I could feel my anger rising on your behalf just reading your post. Maybe they were having a bad day but let's face it, their bad day couldn't possibly measure up to how you are feeling. If you feel strong enough, perhaps mention his lack of bedside manner/acknowledgement the next time you see the surgeon. Let's face it, you have a long road ahead and you need to feel comfortable with your team moving forward. Having a big cry is like an emotional vomit. You feel hagged right now but hopefully tomorrow you will feel that some of the stress has lifted a bit. Hang in there. It is so terribly difficult at this early stage when you still really don't know what you are dealing with and it feels like the goal posts keep moving. Sending positive energy your way.  Karen xox

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    Thanks Trace, you are spoiling me, I actually look for your cuddles now lol.

  • Anonymous's avatar
    Anonymous
    10 years ago

    OMG what an awful experience for you and your hubby. Find yourself that screaming wall.... bushes just don't cut it, they bite back. I know that most of my tears were from either pain or frustration. We all just want to get on with the getting better bit, we don't need s&&t like that complicating things when we are already under stress. Feeling for you Honey, and sending you a big cuddle, Trace ????

  • maryroset1's avatar
    maryroset1
    Member
    10 years ago

    Hey there. Try not to be too hard on yourself. Sometimes you need to have a cry. Unfortunately you cant plan for these things. Maybe they will start taking you seriously rather than giving you the runaround. Remember no one knows how you are feeling unless they have been through it themselves so let them deal with the tears thats what i say!

    Not sure about lymphodema being rare nowadays and how she came to that conclusion. I have mild lymphodema in my arm and boob and only had two lymph nodes removed. 

    Make sure you keep asking questions. 

    Maryrose 

     

  • Brenda5's avatar
    Brenda5
    Member
    10 years ago

    I have asked the McGrath nurse about measuring pre surgery for a lymphedema sleeve and she said there is a machine that does it and it is on order but no idea when it will arrive.

    I also asked the lady doctor yesterday and she said lymphedema is rare nowadays and if it did occur a sleeve in my normal size would be too tight at first and would cut off circulation. She seemed to think it might be a stepping down in size process.

    She wanted to drain my post mastectomy swelling yesterday as with gravity it has made a big soft lump right along under the scar but she went and asked the surgeon and he said he would get it next week during surgery so I guess I will just have to put up with it until then.

    I also asked about seeing an oncologist since they do have the tumour pathology results and my axillary clearance will be done next Monday and the lady doctor said they will be presenting my case in a meeting to oncology on the 15th Dec.

    I also asked why the second chest and abdomen CT scan within 18 days and she told me it was 'staging' for the axillary clearance and to make sure the cancer had not yet spread to organs. For someone who vowed a month fiddling about with core biopsy and then the surgery could not have possibly put the cancer up in to my sentinel node in that time and now 3 weeks again to my next lymph node clearance surgery, it doesn't not exactly boost my confidence that it isn't spreading in to my blood stream to any where it feels like it.

    At least the tears did pull a few answers out on my treatment as it seems to be a well kept secret step by step otherwise.

      

  • TonyaM's avatar
    TonyaM
    Member
    10 years ago

    Hi Brenda, you poor love having to deal with all these unkind people.Sorry to hear the goal posts got moved on you and now you need another op. It's just a suggestion but ask to have your arm measured prior surgery for a baseline incase you have lymphoedema issues later on.Also insist on being instructed with arm exercises after surgery.Not sure which hospital you are going to but it sounds like you need to be the squeaky wheel to get the oil!! Tonya xx

  • Chorsell's avatar
    Chorsell
    Member
    10 years ago

    Sometimes we all need a good cry, we try so hard to keep it together but in the end the anger, frustration and confusion get to us all, it's perfectly understandable. Sorry you had to get messed around like that just what you don't need. 

    Sending. Big hugs 

    chris xxx

  • Kim_R's avatar
    Kim_R
    Member
    10 years ago

    What a bloody awful time Brenda!

    you have every right to cry, too late to change surgeons now but I bet you feel like it. I had a melt down before my heart pull test, 2 nurses then the doctor could not find a vein, they kept trying, I felt like I was not a person at the end of my vein less arm. I think medical professionals need to take a breath during their day and realize they are treating very traumatized people, even the ones putting on brave faces.

    i hope all goes well in the next round of operation.

    Kim

  • HIT's avatar
    HIT
    Member
    10 years ago

    aaarrrggghhh   Need I say more.  Hope things improve pronto.  The headache may be worth the release.

    Pam