Met oncologist last Thurs. Good news- tumors in lungs shrinking, one behind eye NED but one at back of head growing. Due to continued isduescwith swelling agreed to refer me to Meuro MDT for decision on surgery/radiotherapy. Told I would hear early this week. Started chasing Tues morn. Countless phone calls later, 5pm today found out I had not been referred and earliest I will be referred is Thurs 28th as that is when Oncologist is back in clinic. I was referred to this team on 10/10 following a hospital admission for swelling on brain but nobody knows the outcome of that either.
The specialist nurse who called me 5pm msde me go through all my medication, give her the dates of my hospital admissions, how many mg of dexamethasone I was on and rate how effectively I responded. I was really concerned whenvshevduggested I had xompletevrecovery when I told her I was really struggling yesterday and gave never got back to pre swelling ability. Arevtheyblistening to me at all? Are they just pacifyimg me in the knowledge that they can't help me but don't want to tell me (I'm guessing not this as it would be so wrong). But I have now lost complete faith in the team and the system. I know I will need to chase everything myself from now on to make sure it happens. All this on top if being ill.
Rant over.
Written by
Aamar1
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So sorry you’re having a bad time. I know how distressing it can be when you are waiting for news from MDT referrals. A week can seem such a long time when you are desperate to know - I had difficulties at start of my diagnosis as I have a different consultants at different hospitals for my lung treatment and my brain tumours! I am pleased to hear the positive news on lung and eye tumours. Try to stay strong and positive - difficult I know but particularly when you are waiting. Huge hugs x
It's very frustrating waiting to see a specialist but good that in three days time you should see the oncologist at the clinic.It is a good idea to write down any questions or concerns you have about your management and or treatment options before your appointment.
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