Follow Up Stress & Worried About Recurrence!

Hi everyone,

I haven’t posted a topic for a long time! I’m just looking for a bit of reassurance & advice from you lovely ladies. And honestly, I just want to have a bit of a rant and a vent. (Apologies in advance for the long post!)

I had my treatment in Leeds (CC1B, Trachelectomy in 2013), and was having follow-up appointments every 4 months, which changed to 6 months last Summer. I moved to London in 2014 and was originally travelling up to Leeds for the follow-ups but decided I needed to move my care to a London hospital.
I spoke to my GP who organised this for me, and I went for my first follow up with the new place in November 2015. Somehow, I had been double-booked for both the rapid access gynae clinic and the normal gynae outpatients clinic - so I went to the rapid access clinic as that date was sooner. At the appointment, the doctor saw that I had been double booked and cancelled my outpatient appointment. I am due to have my next follow-up appointment about this time of year, but hadn’t heard anything. My GP told me to ring the hospital, which I did, and it seems that when the doctor cancelled my outpatient appointment last year, this discharged me from their care and I was no longer going to be invited for follow-ups.

It has been such a stressful morning, being passed from pillar to post and the majority of hospital staff being unhelpful and telling me that it was right that I had been discharged and that my doctor in November said she didn’t need to see me anymore (even though it clearly said in my last letter that they would see me in 6 months). Finally spoke to a lovely lady in Neurology - only after I’d burst in to tears in the car park at work - who managed to put me through to the head gynae-oncologist’s secretary, who’s going to ring me back with an appointment date.

The other thing I’ve been worried about is, in the last few weeks I’ve been having some slight discomfort during sex and a tiny bit of bleeding afterwards. I came on my period a bit earlier than I should have (I’m on the pill) but after that, the first few times I had sex it was all normal, but then last night I had blood again. Not even immediately after, but when I went to the loo before bed. I’m obviously concerned it’s something bad, even though all of my post-op smears have been normal.

Any advice, tips, words of wisdom and kindness will be gratefully received! Rant over xx

Oh bless you!

What a horrid situation to find yourself in! But it sounds very much as though you must have kissed the right frog because if the head gynae-oncologist's secretary has taken up your case I doubt that anybody is going to argue with her!

I'm sorry I can't help you very much about the whole period/spotting/post-coital bleeding thing except to say that when my cancer was diagnosed, the bleeding wasn't 'when I went to the loo before bed' it was a bloody mess all over both of us. So I'd like to think that yours is something less sinister :-)

Be lucky :-)

Thanks Tivoli! Yeah I have given myself a good talking to and know I'm probably stressing over nothing - it was a combination of having a rubbish night's sleep, and the hospital being so unhelpful that just made me go off on one! 

Luckily, they called me back just now and have sorted out my appointment out. Phew.