Appointment tomorrow - update

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I’m worried about my appointment with my consultant tomorrow. I  started immunotherapy last August. It was all going well but Christmas was spent at the AOS clinic with diarrhoea for the second time, The doctor told me my treatment would more than likely be stopped but would leave it to my consultant to make that decision. I was due a phone appointment with him last Friday but that was cancelled and replaced with a face to face appointment tomorrow. I’m guessing he’s decided not to go ahead with anymore immunotherapy and wants to tell me that personally which leaves me anxious as to what can be done next. I’m always trying to deny I’m in this awful situation and get on with my life as normal but sometimes it’s very difficult and right now I’m trying to carry on without worrying my hubby! Desperately hoping for good scan report at the very least. 

As I don’t post very often I’m not sure if I’m supposed to update original post or do a new one?

Anyway, thanks for your messages. My appointment went better than expected. It turns out my oncologist changed appointment to face to face as he wanted to see me to check I was ok after second outbreak of diarrhoea. He said I looked very well and that my latest scan showed tumours decreased by 20-30% so immunotherapy is working. He’s organising another treatment at a reduced level to see if I’m ok with it. He says we’re fighting this as a team, I feel blessed to have him looking after me!

  • Hi Auntie T

    Sorry to hear this, that now a face to face.. I know that feeling as such.

    I had a Brain Scan and got s phone call, can i go into clinic, i could not as such but went, last week, and i got an answer, to why.

    Though we always think the worse, why would we not, we are human after all.

    I always  like to know, what the next step is, and my oncologist has always got  the right answer for me, i  trust her, never seen another one, in seven years, and for me that is really good.

    I hope you to get the answer  you want, and hopefully, a plan is in place for you.

    My thoughts are with you, and please keep us updated, x

  • Thanks for your kind words Ellie, much appreciated. 

    I’ll post an update x

  • Its hard though you can do it, we have to.

    Some one always here, to listen to you, we are all in the same club, and understand how you fill, and i know, my family do not always  understand, or they do not want to, so this is my life line, at times.

    To let out our thoughts, fears and emptions.

    Tomorrow, Thoughts are with you.

  • Dear Auntie T

    I am so sorry Auntie T, it is hard to deal with changes in appointments, or any change for that matter. As you have had the same oncologist and you can trust your consultant, I think you will get a proper answer, but it would not make it easier if it is a change you would rather not have. It is so hard to be frighten all the time. I am not sure that anyone not in our situation understands it. I find it very difficult to try to give an appearance of normality to family and friends, while each time I get a beep or something unexpected, my heart misses a few beats. 

    I didn't have any face to face apppintlent with my consultant - ever. She crossed the corridor once to shake my hand, and I got one telephone apointement of ten minutes with her. I see a different oncologist, probably a different junior doctor every three months. Unlike me, you were able to build a rapport of trust. That is precious, They were with you, for you and they will continue to support you. I am answering your post so that you know you are not alone. 

    I will be thinking of you xx 

  • So sorry to read this.

    it’s extremely tough and you sound like you have a loving husband to support you and this group of wonderful people.  

    the hardest bit is the ‘not knowing’ stage. Which is where you are now. It’s sh*t. When you have had your discussion with the oncologist you will have a new plan of action. You won’t always have good scan results but try to stay positive, we’re here to support you, we’ve got you.  In the meantime reach for those big girl pants, all will be okay xxx

  • Hi AuntieT, I think we all worry before an appointment but surely it is better to be face to face so that you can ask the questions you need answered and then you will know what their plan is for treatment for you! I personally would prefer to know exactly what I'm dealing with, so I can fight it head on! Please remember to write down your questions and concerns so you won't forget to ask them. Good luck and please let us know how you get on!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi AuntieT only just seen your post. A face to face appointment  as Annette says gives you chance to get the answers you want, I assume you've had your appointment  by now and hope you got your answers and a plan being put in place , good luck. Sending hugs xx