Not knowing makes me anxious :(

Hi @Tracey B,I'm not from the Womb cancer group but am a community champ who spotted your post hadn't yet been answered.

First off, welcome to the community and to this group where you'll definitely get support from others in a similar situation to you.

I am a control freak ,so know how you must feel re the waiting. It really is the pits, isn't it?

If u can't avoid reading it all up, do use sites like this one and Cancer Research UK which which have up to date n accurate info - unlike some places u find via Google !

Should u want to talk to someone about the uncertainty, you can always find someone awake most times of day - tho not necessarily from this group maybe. You can also ring the helpline 8am to 8pm  7 days a week on 0808 808 0000.

Hi Tracey rant away if ever anyone had a reason to you do! The anxiety of not knowing is agonising I was in a similar position 3 years ago from being told we don't think it's cancer to well I'm afraid it is but only an early grade 1 stage 1b. Then preop  Mri it looked like the cancer had breached the wall of the uterus making it stage 3. Then after surgery the grade was 2 the cancer hadnt breached the wall but it had spread to a single lymph node so ended up stage 3 anyway. I didn't know if I was coming and going and I found that more upsetting than the diagnosis. I don't have an easy answer as its only natural to worry. The forum is a great place to let off steam and get help and support and has certainly kept me sane over the difficult times. Trying not to cross bridges before you get there would be my advice for what it's worth!

 Hi there and welcome. Never apologise for having a rant here - we’ve all done it at some point. Waiting really is very hard to do isn’t it? We all understand the feelings you’re experiencing - the uncertainties are so strong and the feeling that your life has just suddenly changed in a way you perhaps never envisaged can be difficult to process. 

You sound to be very proactive in helping yourself. Information can give you power but it can also beat you up emotionally if you’re not careful. I’d gently suggest you try to limit your googling if you can. I totally get how anxious the not knowing makes you, the wondering when you’ll get a call to go in, the worrying about whether it’s spread or not - all these things gnaw away at us. The best advice I had at this stage came from my clinical specialist nurse who told me to try to take things a day at a time and not to second guess anything. It wasn’t easy to do but it was worth trying to put it into practice. One thing that helped me was to keep doing all the things I enjoyed while I waited. My nurse plus a couple of good friends helped me to see that all the good things in my life were still there, I just sometimes had to look that bit harder for them  on the bad days. I found that once o l ew the treatment plan I was able to cope a bit better. Keep talking, keep asking questions here. You’ll find lots of stories to encourage and inspire you on this forum and I hope you’ll find that all these feelings will gradually become more manageable.  Sending you lots of good wishes x

Hi Tracey B, I was also treated with hysterectomy. When you go for your pre-op appointment ask about the dos-and-donts for after the operation, such as movements to avoid and when you will be allowed to drive again. I was given a list of instructions at my pre-op so I went home and had a think about how to work around it all, then got stuck in to problem-solving before my operation.  It gave me a sense of control at a time when lots of things were outside my control!  I focused on a list of jobs to do and people to contact. So, I suggest to channel your energy into organising: do the shopping, get your fridge/freezer stocked up, do your cleaning, arrange someone to be on hand to help if required (friends, family?). Arrange home to be easy for when you recover from surgery e.g. I put chairs in the kitchen and by the landline phone, and I set up a table and chair for my laptop, because I knew I wouldn't be able to move the furniture around while I was recovering.  I took my heavy coat out of the wardrobe and hung it on a rail so I wouldn't have to stretch and lift it, I put cooking things handy on the worktop.  I did laundry, cleaned the windows... all the things I knew I wouldn't be up to doing at first when I returned home.  Wishing you lots of luck.  I am sure other ladies will be along here soon to add their advice too.  My operation was just over 2 years ago now and I am physically strong again, running, cycling, and unfortunately having to do the housework again.

Hi

I’m so sorry that you have all this worry. Living with this kind of uncertainty can be so hard and I have to say that the period between diagnosis and starting a treatment plan was the worst for me in terms of anxiety.

I think you’ve already had some great advice from the ladies here. I’d just like to add what I hope will be a bit of reassurance. I can imagine that the wait to see the specialists and for the pre-operation appointment must feel like an eternity. There is now quite a lot of evidence that women who see a specialist surgeon for this kind of operation do much better than those who see a general surgeon. The wait will be worth it if you get the right surgeon to carry out the specialist operation for you.

It’s great to hear that you’re a can-do kind of a person. I am like that too. In the weeks between my receiving a diagnosis of cancer and my having the hysterectomy, I concentrated on getting myself as fit as I could. I did lots of walking, which also helped my state of mind. I also took up meditation, using the Headspace app. That became my lifeline  For me, helping me to manage the anxiety and the uncertainty that I had to live with.

I wish you all the best and hope that your operation goes really well. I also have a grade 3 diagnosis so if you have any questions about that please just ask. I don’t pop into the womb group so often these days as my diagnosis was over five years ago. So it’s best to tag me in a message. Type the @ symbol then type my username. A blue box will appear with my name in it. Hit return and that will highlight my name. The system will then send me an email to say you’ve messaged me.

Be strong. Big hugs xxx

Thank you soooooo much buttercup1 x

I feel much better knowing that there are people like you out there... I've only just realised I have replies to read and respond to as I was looking in the wrong place on the website and the email alerts were in my junk mail!

How dare they put such important stuff in the bin!!!

Thanks again and keep up the good work 

xxx

Thanks so much @daloni for fleshing out my reply

OMG! I feel so much better after reading your post!

(OMG is something I never say.. but it was genuinly the first thing that came into my head ha ha!)

I absolutely love your last sentence and am going to make it part of my mantra... I've also googled it and have pinned it to my new Pinterest Board: 'Bugger-off to the Big C'

Thank you so much for sharing your personal story papermoon you've helped me a lot x

Aw thank you Fairycake x

I totally agree with you.. it's very important to keep talking... I'm well practiced at that! I used to work on a careers advice helpline (yes I actually got paid for talking!) and I loved it... It taught me the importance of active listening too, which my Macmillan Nurse is clearly very good at. 

Everthing is still very raw in regards to emotions and feelings and I've struggled in between then extremes of sticking my head in the sand and going all out with research. I'm proud of myself for not falling 100% into the Dr Google trap but failed the other day when I saw an article heading (something about statistics) and then clicked on it... BIG lesson learned there!

I've mostly stayed indoors for the last few weeks mainly because I've always felt drained on my return and my symptoms (period-like pains and bleeding) are unpredictable. Now I've read your post I think I'll try again to get myself out there to do then things I enjoy doing with people that lift me up... starting with a coffee with my Daughter this weekend!

Thanks again xxx

Oh WOW that's fab LittleRunner!

You should write a book or at least a blog! 

I'm going to make a start on this tomorrow... I might even stick the list on my fridge ha ha!

I think thinking about the practical day to day stuff is going to help keep me occupied, I'll feel prepared, less of a burden to my Hubby and family and just as importantly It'll make me feel good because I'm being proactive rather than reactive.

It's really good to hear that you're physically strong again and getting yourself out there running and cycling. That's one of the things I'm looking forward to the most.. being active again even if it is to get the laundry done ha ha!

Thanks so much for the advice and inspiration xxx