Why can’t I think of anything else???

Hi Jane, I feel exactly the same. I had my hysterectomy in the middle of July and saw the sarcoma consultant at the beginning of September. I am having 3 monthly scans and consultations so no sooner will I have a scan, see the consultant two weeks later then it'll be repeated two and a half months later. It worried me that I have lymphovascular space invasion which isn't being treated. The consultant said that I am in remission but it often returns within the first two years. As far as my husband is concerned I am cured so I don't want to go on at him about my worries. I ended up in A and E last week as I could barely put one foot in front of the other. I am always very anaemic despite taking iron twice daily so I thought it must have dropped even further. My GP sent me to the hospital where they did various tests but my iron wasn't low enough for a transfusion. The doctor asked if I was sleeping..er no. He said that I was exhausted and gave me a two week supply of diazepam to try to get me into a reasonable sleep pattern. He commented on my positive attitude. Little did he know what was really going on in my head.

I'm sick of this merry go round, I want to get off! Sometimes I think it's not really happening and it's just a horrible dream or someone's idea of a sick joke.

Take care, Deb

Hi Deb. We’ve spoken before. 
I know, I’m exactly the same. It’s just horrible and there in my head, constantly. 
mine has also spread to one lung, but not concerned about chemo for 6 months. I was going to start radiotherapy but they’ve held that back too, as didn’t want to affect my life now, as I’m currently so well. It confuses me. Do I need it or not?

They said they’ll wait and start it when it returns in pelvis, as they said they are sure there’s still cells left behind from hysterectomy. Called lymphovascular invasion too. 
Weird how docs say different things. Definitely didn’t say I was in remission.I wish she had. She was very negative! I was given 1/2 years survival , as that’s what ’normallly’ happens. Hence, I can’t get that out of my head!

I just hope she’s wrong and treatments will help , when I finally get any. 

But your doc must think you are in a good position to have said that, I wish mine had. 
we do have to try and carry on as normal as we can. 
I hope your tablets with and you get some sleep soon. 
I took nytol last night and slept quite well, 

Take care 

jane xxxx

Hi Jane,

Mine was in my vulva and I've had 2 surgeries. I'm the same with every twinge in that region and I've now been referred to colorectal for for monitoring (they told me this via letter Friday!) I've booked 3 small short breaks, work full time and am trying to remain calm and positive.... though not always possible. I'm determined not to let this rule my life.

Your not alone, we're here for each other and we all will find a way to live with this 

Take care

Chrissy x

Hi Chrissy

Thank you. 
it’s good that you work, at least you have a focus, I wish I worked, still looking for part time work. 
booking a break is always good, I have one booked for January. 
We do need to find a way, and sometimes I’m good at just getting on with it, it just never leaves my head. 
Thank you 

Take care too 

jane xxxx