Have I been abandoned; or is this normal

Hi Macshimi, it sounds like your not having a good day/week. My pathway hasn’t been the same as yours so I can’t tell you how you should be feeling. I was thinking that you do have a Key worker at the hospital for me that’s the specialist skin cancer nurses who are Macmillan nurses in my case. They can liaise between surgeons, oncology and dermatology and push for any required action or put your mind at rest if unnecessary appointments have been cancelled. 

I had an unknown primary and my one and only dermatology appointment was over 5 years ago after my diagnosis from a CT scan and lymph node biopsy. The primary wasn’t found, I wondered if further appointments were required, my nurse said that she could refer me quickly if I noticed anything that was concerning me, as my systemic treatment made every freckle disappear I’ve never had any further concern re my skin. When I had surgery to remove a lymph node I had one follow up appointment with the surgery team, and was told to talk to the specialist nurses or oncology if I had any worries. I speak to oncology every 6 weeks by phone (as everyone does in these covid times) before I have my immunotherapy Pembrolizumab, but I’m encouraged to contact them between appointments if anything is worrying me. During covid I had a short break in treatment but went back on it early after I flagged up an enlarging lymph node. 

i can’t tell from your post how you're truly feeling, I’m guessing the most concerning cancellation is your eye clinic, I can’t tell if you’ve had your opticians appointment and have anything to feed back to your hospital team or if this can be talked through with your specialist cancer nurse who could get you an appointment if it’s necessary. If you want to check if your being reasonable to push for appointments you could ring the Macmillan support number on this site 0800 808 0000 and talk it through or post in the ask a nurse section, I didn’t check if you’ve already done so. 

Due to social distancing in hospitals they can’t have as many people attending for appointments and I’ve had longer to wait between scans, the last few months, I know that they will act quickly when they need to, when they arranged a CT scan and MRI for me and I’ve been happy at other times to let them prioritise other people if they need to, although there’s been that bit of doubt of having to leaving things longer than normal. I hope you get to the stage of being happy with any new follow up plans.

Thanks for replying KT. I spoke to my Oncologist last Friday and she was surprised at the cancelations and will speak to Plastics. I found the number for the Consultant Ophthalmologist's PA and contacted her; she said I was on a waiting list, but not forgotten. For Dermatology I have an appointment in 10 months..

The above is good to hear macshimi, it sounds like the contacts you’ve made have eased your mind a bit.