Follow up

That must have been incredibly frustrating for you Chocolategirl. I know how stressful going for check-ups can be but then to find that you've been seen by the wrong specialist just adds to your worry doesn't it.

Do you have a CNS (cancer nurse specialist) assigned to you? If so it might be worth speaking to them to see if you can be seen by the correct specialist before your next appointment, otherwise it means that you've missed a check-up by the correct specialist. If you don't have a CNS then maybe a quick phone call to your consultant's secretary to explain what's gone wrong might mean that you get an appointment sooner with the correct specialist.

Let us know how you get on

x

No i don't have a CNS. I rang Liverpool but al they could advise was that when i get my next appointment letter out i ring and speak  to the consultant's secretary and make sure it is the right person i am to see.

Liverpool seem to think that i will get that letter very quickly because they were always very good at sending out letters ( they usually arrived with in a few days of me arriving home even for 6 months ahead) but things do not move that quickly here

I do not know who my consultant is.

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Hi Chocolategirl

I've just come across your reply to me and realised that I didn't respond. Please accept my apologies!

Have you had an appointment letter come through since we last spoke?

If you don't know who your consultant is ask the hospital switchboard to put you through to the eye clinic department who will be able to look this up for you. I realise you might not need to know this now if you've got your next appointment through.

x

i got my letter at the weekend and have been phoning the hospital to try to heck things out.

i eventually got hold of someone who was able to confirm that the consultant i am seeing can do deep eye scans and ultrasounds of my eye (I was twice put through to the diabetes clinic plus the switch board had never heard of the consultant), so hopefully it will be alright this time. The joys of having a rare condition.

just thought i would do a quick update.

i had the appointment in May. The Doctor? looked and said my eye looked all right -  asked was the meleanoma shrinking - he said  it is not growing, September appt did not happen although i had had another urgent referral from my optician as he had found fluid in my eye - I rang the hospital who said there was a backlog. I rang today as i should have been having a January check up - still backlogged from September - i mentioned the fluid to be told it is not important. I rang Liverpool who said i should definitely have been having my check ups especially if there is fluid in the eye - they will try to see what is happening,

I had the result of my liver scan on Monday - they are trying to catch up so rang on the off chance that i would be free= i asked them about my eye = not in their remit but she did say they would send a reminder.

so what now - i do not have a named nurse or consultant.

Hi Chocolategirl 

That's good to hear that your melanoma has not grown but not good to hear that you're not having the check-ups you should be having.

Maybe the next course of action would to to speak to PALS (Patient Advice and Liaison Service) at your hospital. Part of their remit is to help you resolve problems you might be having when using the NHS.

I hope you can get this sorted soon

I looked into PALS - do not operate in NI.

Over the last few days the vision in my treated eye has suddenly nearly vanished - i can see light but not much more. when this started i rang the hospital again - i am top of the waiting list and might be seen at the end of April - the consultant is very busy you know - they will look at my case then.- suggested I see my optician to get an urgent referral - i said i did this back in September

i have an appointment with my optician again on Friday who hopefully will try to push things again. i just hope it is something that can be treated easily.

Added to that i am having thyroid problems it is extremely swollen and i have had a couple of night s in hospital due to food regurgitating. From my own research it seems that any radiation treatment round the head area can affect your thyroid so it is probably eye related but maybe thyroxine can sort that out - maybe borrow my mum's tablets (only joking!) 

Sorry Chocolategirl. I assumed that you were in England as you'd mentioned having treatment in Liverpool.

I hope your optician can help you get the check-ups/treatment that you need.

x