very very frightened

Cervical screening results
1

I'll apologise now for the up-coming wall of text but I'm home alone right now and don't really have anyone to talk to.

The story so far:

Husband and I arrived home from two weeks holiday on Sunday the 27th of July only to find various letters. The smear I'd had just before going on holiday had come back dodgy and I had been given an 'urgent' appointment at the colposcopy clinic - for while we were away on holiday, which I obviouly missed. There was further letter strongly urging me to get in touch as soon as possible. So, the morning after our return (our wedding anniversary, coincidentally Frown) and with a hangover (urgh) I called them and was asked to go in THAT DAY. We went in the afternoon and I was told I had CIN3 and high grade CGIN. I had a lletz with tophat there and then under a local. The consultant did say I could book in for a GA but he would prefer to do it as quickly s possible - and it was THE most uncomfortable, painful and hideous thing I have physically been through. I was told results could take 4-6 weeks.

 

I had 4 days to recover from this before having to go for a week's holiday with my extended family. My brother died of cancer, my much beloved neice is ill, my parents are very elderly and my mum is developing dementia - I couldn't tell any of them what was going on with me so I invented a tummy bug and a horrific period to explain why I didn't fancy going off yomping up mountains. Whilst away I felt rather ill, and the discharge got quite whiffy and embarrassing so I had to get antibiotics from a local doc.

Family holiday over, husband heads off to a distant EU country for 10 days to visit other family. Not due back 'til next Wednesday.

Fast forward to today: phonecall from hospital - can I come in on Friday morning to urgently see consultant again. This is to be at another hospital, not even at the colposcopy clinic because he wants to see me as soon as possible. Now, of course, I'm freaking out. I tried to find out on the phone today what we were looking at, in order to figure out if husband needs to come home. We had previously worked out 4 scenarios:

1. Everything was got with lletz, discharged for follow-ups.

2. Need a repeat lletz, or discuss possible hysterectomy (I'm not TOO upset by that prospect, we're not having children anyway)

3. Cancer found, need hysterectomy

4. Cancer found need chemo/radio etc.

 

We had decided that if it was scenarios 1 or 2, I would go to any appt. on my own, if it was 3 or 4 husband would need to come home and come with me. The nurse would not give me any indication of what we were looking at but after I explained our reasoning and that he was away and it would cost us nearly £1000 for him to get home in time sshe would still not be drawn into saying more than hinting very strongly that he needed to come with me! So now, husband is coming home tomorrow on vry expensive and convoluted flights.

If all that wasn't enough, we're supposed to be moving house several hundred miles away in three weeks - husband starts massive and stressful new job. So far this year I have started and resigned from incredibly stressful teaching job in a failing school with a culture of staff bullying (half the teaching staff tried to leave in the two terms I was there), I had labyrinthitis for a month, my mini-me niece has been diagnosed with a neurological disorder which results in fits and fainting, my mum is getting mentally pretty bad, I have been diagnosed with an anxiety disorder - and - get this, finally, in the last 6 weeks been diagnosed as having Aspergers.

I am beyond the edge of stressed and scared. I don't even know what I want to say or ask.

Sorry.

2

So sorry to hear what you are going through.  Even worse when so many other bad things are going on.  Although it's awful what your family are going through, you need support to and to concentrate on yourself.  Try and stay strong and I wish you well. xx

3

I am not able to offer anything useful as I'm at the stage of waiting for results following Lletz; but i just wanted to offer my moral support.  Try to keep yourself calm and know that whatever it is, it's being dealt with in the correct manner.  This is how I explained my lletz to my mother when she freaked out that they'd found pre-cancerous cells - they removed them, it's dealt with! 

I'm glad your husband is coming home to be with you - sounds like you need a huge squeeze x

4

Just wanted to send you (((hugs))) It sounds like you have a very supportive husband. Try just to deal with one thing at a time and be kind to yourself. If you want to do something practical you could write a list of questions for the consultant xx

5

Blimey. That's a lot going on there! First of all the one big positive I can see in all this is you're not going through this alone - you have your husband. Secondly, your appointment is nice and quick. It's the waiting that drives you crazy. Once you find out what's going on then you can begin to deal with it and know there's a way forward. There is so much support out there if you need it. Are you receiving any support re your Aspergers diagnosis? All you can do is take this one day at a time and find out first what you're dealing with. Jo's helpline is fantastic, as are all the women on here who have a wealth of experience. Let us know what happens tomorrow and I wish you all the best. 

Mandy xx

6

Hi - I can't really offer any advice I'm afraid but wanted to send big hugs as it sounds like everything's going on at the moment. I hope tomorrow goes ok, like Mandy says, one good thing is that things are in hand and being dealt with  - please do let us know how you get on xx

7

Thanks for your words of support, ladies. I'm feeling much calmer today and have even got on with some of the house move jobs.

Yes, on the one hand I'm very pleased whatever it is is being dealt with swiftly, on the other I'm 'rather' worried by the fact I seem to be being rushed through the system. I have to say, if it *does* turn out to be scenario 1 after all I'll be a bit pissed off no-one would tell me over the phone and that we've spent a grand we don't have and my husband/mother-in-law's holiday has been ruined. That's a bit backwards!

No support as such right now regarding the AS diagnosis, as I'm moving out of the area (another worry as far as co-ordinating treatment for this wee nasty goes) however, it's not a diagnosis I was surprised by, to be honest. I've been dealing with who I am for 39 years, I can manage a few more months, I reckon.

Good plan to think up questions for tomorrow's appt. My head goes completely empty of rational thought when very stressed, which is infuriating for someone like me who NEEDS to know all details and scientific terms etc.

Right now? I'm in a mood of "Clean ALL the things! Raarrrr!!" - which is most definitely a sign that something's up with me. I hate cleaning ;-)

Thanks again, loves.

8

Good luck for tomorrow, it's good you won't be alone. definately write down any questions you have as it's the one thing I always think of after and it's so annoying to get home and realise you've forgotten to ask something major. Tell your husband too so if your mind goes blank then he knows what to ask on your behalf. I hope it isn't too stressful for you, the waiting and not knowing is the worse, at least when you have some answers you know what you're dealing with. I'm like you in that I NEED to know all details and want the full medical lingo too. Good luck x x 

9

Unfortunately, news was not good.

Not TERRIBLE, but not great: cervical cancer, provisionally diagnosed as 1A1, but I need an MRI to see if the Lletz got it all and so that  a multi-disciplinary team can determine exactly which grade I am, whether there is Lymph involvement and what the treatment might be. Could range from being discharged with no further action for regular observation, to hysterectomy/radiation - with a couple of options in between.

Yippee - another period of waiting!

Thank goodness the nasty antibiotics have finally finished +48 hrs - apparently these ones have the same effect as antabuse when combined with alcohol! - and I'm finally allowed a nice big gin (or 4) tonight.

x

10

So sorry to hear your diagnosis, hopefully the LLETZ did get it all. Have they given you any indication of when the MRI will be? Fingers crossed you won't have too long a wait.

Hope you're doing OK - big hugs to you, definitely get the gin open! xx

11

Well that's a bugger. But knowledge is power and you're another step closer to dealing with the situation. Here's a tip - tell your Dr/cns that you're willing to travel for a scan. My friend got a couple of her scans a few weeks earlier because she travelled to Norfolk from Essex.

Keep us posted!

Mandy xx

12

Hi

just came across your post. I am in virtually the same boat ( even got letter on return from holiday! ) and pretty sure my result will be cancer. I am preparing for the worst. But also have huge number of other issues ie stress caused by teaching job, daughter in process of being diagnosed ASD, father dying. 

How are you doing? 

Molly