Forum Discussion

nicole_h's avatar
nicole_h
Member
10 years ago

UPDATE

Hi Everyone,

This new site doesn't work from my phone and I can't access a computer during the week whilst I undergo radiation so I hope you'll forgive me for not replying to your messages personally. Jess is working on the problem with IT as many others are experiencing the same difficulty.  BTW does anyone like the changes?  I see no improvement or advantages.  The worst change would be you can no longer see the photo of the person you're talking to.   I do want to thank you all for your responses though.

As for my blog.  I'm feeling really low and alone.  Scared about the future. How I'm ever going to regain my confidence to apply for a job, see old friends or make new ones. I feel like never going out the door or speaking to anyone again.  Have any of you got to this point?  Any ideas?? xx

5 Replies

  • nicole_h's avatar
    nicole_h
    Member
    10 years ago

    Thanks hazel.  Wish they'd prepare us better for the tough haul.  I feel like I'm on a need to know basis, that they want to dribble me information  bit by bit. Wish they'd just tell me straight up the full story so I'm prepared and have time to research and find answers to all my questions. Btw finally after 10 months I got my diagnosis from the radiation oncologist. Invasive ductal carcinoma grade 3 with lymph node involvement and dcis.

    So sick of treatment. Better do the job is all i can say. When or if this finally ends I am going to officially complain to hope that the oncology service wakes up to themselves and are answerable to someone who can improve the system to better serve the patient. 

     

  • nicole_h's avatar
    nicole_h
    Member
    10 years ago

    Hi karen,

    Don't have any rehab here in orange that im aware of. So disappointing there are no support services being offered to me after 10 months.

    I even asked to see the physio specialising in lymphatic drainage & psychologist.  No follow up there. 

    Radiation therapy has been the best part of this year's long ordeal.  Everyone is so helpful kind and thoughtful.  If only chemo and oncology could have been like that. Shame on orange. They have the best and brand new facilities. They should do more for patient care & monitoring and follow through your every stage. Noone should be left wondering and uninformed.  Someone should be available on call 24/7 as required. 

     I have arranged my own psychologist separate from the hospital.  Appointment is Monday.  Hope she can help. Might be too far gone let you know how I go. Nicole x ♥

  • nicole_h's avatar
    nicole_h
    Member
    10 years ago

    Thanks guys. I am trying a new psychologist next week.  Hope she can help me.  No oncology rehab where I am im afra

  • Hazel_M's avatar
    Hazel_M
    Member
    10 years ago
    HI Nicole, I'm so sad to hear you are feeling low. I definitely went through that when I was on chemo. I felt overwhelmed when I tried to see the future, how will I ever get through this? When I felt like that, I made myself get back to the 'one day at a time mantra'. Very hard to do when you are in the middle of treatment, but it kept me sane. I am a little over 12 months since treatment and I can tell you it does get better. Hang in there, you can be proud of yourself for getting as far as you have, it's a tough gig, that's for sure. Sending you big cyber hugs, take care, Hazel xx
  • Cook65's avatar
    Cook65
    Member
    10 years ago

    Oh Nicole, I'm so sorry you are feeling like this. Can I suggest that you try to get into an oncology rehab? It's made a huge difference to me and the way I feel. You can do it before during or after treatment. Or at least get some counselling to work through your feelings. Stay on here ( I don't like the changes either and see no benefit at all for the upheaval). And talk to others who are going through the same thing. I made a decision that I can't do anything about the future and I don't want to waste my today worrying about it. Live life for now. No one knows what tomorrow will bring. Hang in there xx Karen