Help please, Emotional and confused

hi all,

I've been obsessively reading all posts and replies while I've been waiting for my diagnosis, big thanks for all who contribute because the one and only thing keeping me going is knowing that I'm probably normal to be going mad with uncertainty!

I'd really appreciate it if anyone could help explain why there is a change in the tests I'm being sent for please. (Sorry for the long post)...Basically, after having discharge and bleeding I visited my GP. He said the 'good news' was he could see what was causing it, a tumour on my cervix! I had an emergency appointment with a gynaecologist the following week, he confirmed it was abnormal, took 2 samples for testing, introduced me to the Macmillan nurse and sent me for blood tests and a chest x-ray there and then. He said he could see me in 3 weeks (21/04) but I explained I was going on holiday that day so could I leave it until I was back. He agreed this and an appointment made on 05/05. Anyway, 2 weeks later I get 3 letters from the hospital, an MRI scan appointment on 20/04, a new appointment to see my gynaecologist on the 21/04 and the cancellation for my appointment for 05/05. Obviously this could only mean one thing so I rebooked my travel to the evening in the hope that I could still go away and went to my appointments. 

This is when I started to get emotionally all over the place...up until now I think I was numb and resigned to worse case scenario so any thing less would be a blessing! Anyway, the lady doing the MRI said it was to scan my pelvis, great I thought, my lungs must be ok. Then however she changed the thing she'd put over me for a bigger frame and seemed to scan a lot higher up than my pelvis which I was unsuccessfully trying not to read into! Following day I go to my gynaecologist appointment presumably to be told how advanced it was only to be told the biopsy was inconclusive! I'm stunned into silence at that point but my Macmillan nurse asked him what it showed and he told her cin3 but then quickly added that he still thought it was what we'd discussed last time. I asked about the MRI and he said he has it there but they haven't had a meeting yet to discuss it but he had all permission forms ready for me to have a further biopsy under general so he can have a good look. I signed them and actually went off for my pre op so I was ready to go when I return from my hols (he also said he was going on holiday for the week too so no time was being wasted by me going away). While I was having my pre op the nurse gave me more insight into what procedures I was having, lletz, crypto-something and something else which I didn't catch because my mind was racing...all that I thought was positive because it fits with cin3. She also told me my blood tests were fine from 3 weeks before. I came away feeling that there is a slight chance I've been extremely lucky catching it in time although i don't want to lull myself into a false of a sense of security however everything came crashing down around me at 1.30am this morning when I arrived home from my holiday to find a letter waiting for me, not arranging the procedures as planned but a ct pet scan on 09/05. I'm totally freaking out in fact, is it likely to mean my lletz appointment would have taken longer to come through than another scan or could it be because the MRI has confirmed that there is too much showing up for the lletz etc? As my gynaecologist has been away since I don't even know who would have arranged he scan but I just feel I'm back to square one with all the uncertainty... it has all suddenly hit me so any support will be gratefully appreciated.


Hi Kathryn 

take a deep breath!!!!..... ok, so you are getting all caught up in appointments which are totally overwhelming but the worst part if it is that you are trying to detirmine too much from it all. It is standard procedure for an MRI,chest X-ray , pet scan, blood test more then once , EUA......etc. These test combined will give the best picture to move forward with. The team of dr will discuss together what the best plan, not a dicision of just your dr. 

Try to remain calm and not read into every test or nurses actions or tech expressions. Think if these tests as an insurance they will get it all out in the open to move forward. It is very overwhelming but you will get through this. Stay busy and distracted.  

Sending you positive vibes. 

Thanks for your reply and calming words Lolli. I think it helped just getting it off my chest because the only person who knows about this is my other half who just keeps telling me not to worry, I'll be fine! (I can't tell anyone else because I don't want my family to stress and it's not fair for anybody to know before them but it also means I'm doing a lot of sneaking around to appointments)

Hi again

do concider telling at least 1 person so you can have someone to help you through this. It is really important to have someone there with you when you need it the most. If hubby is not able to talk about this then you do need a support system. 

I was so happy I told my friend in the beginning so I could vent or cry without feeling bad about it, my hubby was also in the mind set of everything will be fine, no need to worry. In the end he did admit how scared he was but didn't say because he thought it was better. It takes time for some people. My hubby still has a hard time with some things but he is getting more comfortable every time we discuss cancer. That word makes some people go silent. 

Good luck with everything. 

Just to let you know you were right Lolli, I finally told someone else today, in fact 2 people and feel like a weight has been lifted! It happened by chance really, I got a phone call in work from the hospital with the date for my procedures (10th May, the day after my pet scan which also made me feel better because I was worried they weren't bothering with it) so I just told the girl I share an office with. She was lovely and encouraged me to tell my boss - I sent her an email with the basics and she phoned me straight back (she's based 150 miles away so we couldn't communicate more personally). She was really supportive too...I wouldn't have expected anything else from either of them really but it's still good to know that I can turn to either of them at any time now xxx