Hi all, this is my first post but I have been reading this forum since just before my diagnosis, so for starters would like to say thanks to everyone posting for the advice I have picked up this way.
To cut a long story short I was diagnosed with cc following LLETZ for CIN3 smear result. I was referred to a consultant, who I saw on 29th Oct and given a date of 28th Nov to have a trachelectomy. Unfortunately on 27th Nov I received a phone call to say my consultant was off sick and my operation was cancelled, and that they would be in touch with a new date, hopefully next week. Nearly two weeks later, I'm still waiting. I did ring the consultant's secretary on the 29th to see if there was any news, as I hadn't been given any indication that his absence was expected to last a long time. The secretary was (I feel) quite rude and dismissive of me, and the call left me very upset to the extent that I had to leave work, and so I'm very reluctant to ring her again. I contacted PALS last Wednesday to see if they could advise me. They replied on Thursday (after I had emailed again) to say that my consultant was still off work but was expected back on Friday, and that they would let me know either way. They also said that they had contacted a senior consultant to see what the options for referral to another hospital might be. I emailed them on Friday and again this morning for an update but have still not had a reply.
I guess what I'm looking for by posting here is some 'what would you do' advice. I'm aware I'm bring a bit of a nuisance by emailing daily and part of me thinks they will let me know when they can, but another part of me thinks that two weeks have now elapsed since my cancellation and I'm entitled to some information. I have been told that my consultant is the only one at the hospital who is comfortable performing a tracelectomy as they are not the norm, which has obviously made things a lot more complicated. Also, this is not my local hospital, for that same reason.
Until now I feel I have handled my diagnosis very positively but I can feel myself beginning to crumble with every day that goes by in limbo. I hate feeling so helpless and this is the first time since this all began that I don't feel as though there is a plan for me, or that I am anyone's priority. I know there are many far worse off than me so part of me things I'm making a fuss over nothing. Feel free to tell me that if you think its the case, like I said, I just need to get some perspective!
Hiya, just wanted to say that is awfull that you havent been given any indication to how long it could be. If i was in your situation i would A) Call the hospital back and see if there are any other Gynae surgeons that do the surgery and ask to speak to them and explain the situation or B) call your GP again explain the situation and see if they can get you an imediate referral to another hospital and consultant (request a phone consultation with your GP). please keep us updated to what happens and good luck! xx
Just thought i would let you know i understand how you feel as i am going through exactly the same wait, the only difference being all staff i have had to deal with have been very caring and helpful.
My simple hysterectomy op was cancelled for 26 nov and then i had to have had another lletz for biopsy at the new hospital. Gone from cin 3 to 1a1 and now confirmed 1b1 i have just got a new date for radical hysterectomy 16 jan 2013. Considering my nightmare began way back in September i am now getting a tad impatient!!
I have spoken up several times about the wait and it seems they do sympathise but are struggling to find theatre slots,.
Not sure if it was my persistance to anyone who would listen or my lovely onc nurse whos ear i bent on friday but i got a call today to assure me a date before xmas is in the pipeline and will be confirmed tomorrow :))
My advice to you is do not worry about troubling people SHOUT UP!! I felt my mental health was giving in due to all the waiting and i was not ashamed to beg!! Best of luck
Thank you both for taking the time to reply. I had an email reply this afternoon from the Patient Liaison (can never quite remember what they are called!) to say that my consultant is back and work and his secretary will call me tomorrow with a new date. Still no indication of how far off in the future it will be but at least things seem to be moving again. I will let you know tomorrow if I do get the call. Hopefully you will get your date tomorrow as well Kath x
Just a quick update - I didn't receive the call yesterday as promised, I tried ringing several times but there was no answer so left voicemail. Have emailed PALS again this morning. Again, will update if I hear anything.
I can only imagine how frustrated your wait is. My first surgery was cancelled the day before I was due to go into hospital and it left me pretty shattered as I had worked up to it. Do you have a nurse specialist that you can also get on the case? Any staff you speak to should be sympathetic given the circumstances and levels on anxiety you no doubt feel. I will keep everything crossed that they see you soon and you get some answers!x
What a rubbish thing to have to go through, a two week wait with no re-scheduled date must be horrendous. Tracelectomys (ies?) are still a new and quite specialised surgery and there are very few consultants that perform it, that's probably why no one else at the hospital can do it. On the other hand being given the option of one means your cancer is very early and very small which is great news!
I really hope you hear something soon, please don't feel bad for pestering them. You have every right to feel anxious and impatient for a result. No one should be rude to you either, they would be the same if the shoe was on the other foot. There is nothing they can do if your consultant is off sick but a little understanding and open communication can go a long way so definitely take this up with PALS.
