Negative thoughts

My hysterectomy is scheduled for 18th September, it was postponed in June because my blood sugars were too high, they are now in control so full steam ahead I thought, then I broke my arm just over a week ago…gynae consultant seems to think this shouldn’t be a problem though.

Although I don’t have a cancer diagnosis I am having a hysterectomy due to atypia hyperplasia. There could still be cancer lurking but I won’t know until I’ve had my hysterectomy.

I have convinced myself that they will find cancer when it’s all sent off for biopsy and I’ve also convinced myself that it will have spread..

People keep telling me to be positive but it’s so difficult when you are dealing with the unknown so I know exactly how you are feeling x

Whilst I want my hysterectomy to go ahead I’m absolutely terrified of having the actual op (I’m fat, T2 diabetic and have high BP) so I’m really worried about complications arising.

I wish you well with your upcoming operation and hope everything is straightforward and you have a good recovery 

Hi Joanne Louise, welcome to the group and to the emotional rollercoaster ride! Well done for getting through the appointments, tests, procedures, scans and waiting - and for facing it all. It’s such a lot to take on board and accept and it’s totally understandable and okay to feel anxious or negative, I’m glad you have your op date. I hear you that you don’t like feeling like you do, but it is okay to feel like that. And well done for reaching out here. I used to call my CNS a couple of times a week just to vent, and I also phoned the Macmillan helpline at weekends as my CNS only work Mon-Fri 10-4 and the Macmillan helpline is 8-8 7 days a week. Outside of those, I only really talked to my husband about how I was feeling, but my main outlet was my CNS.

My diagnosis was in Nov 21 and my hysterectomy in Jan 22. I found that my best and most helpful goal was not to be positive or strong, as they’re too exhausting, but to be pragmatic and just get done what needed to be done. I also found it helpful to keep bringing my mind back to just dealing with today and focussing on what was known now. It was a battle every day but got easier as time went on. Have you been given a preliminary predicted grade and stage? How are you feel oh about the actual op? Click on my name if you’d like to read my story. 

You *will* find your way through this, 

Hi Joanne Louise,

In answer to your question, no one really knows how you feel , although most of us do have a good idea as we've all had those same thoughts at some point and there's no quick or easy solution to get rid of them.

Go with your feelings, you have every right to feel angry. Scream, shout, rant and throw things if you want to, it won't change anything to do with your cancer but it might make you feel better.

I think the hardest thing is not really knowing what will happen, and until you do., and get a plan in place,  you are bound to have some negative feelings.  Don't feel bad about this!

After your hysterectomy, you will know more and accept what is happening and hopefully you will be ok.

Sending good wishes to you, and a big hug  

Helen xx

Hi Joanne Louise, sorry to hear you're having such a difficult time. It's understandable and not unusual that you have a mass of emotions going through your mind whilst you wait for your hysterectomy. I know people think they are being well intentioned when they try and encourage you to be positive but, invariably, it doesn't actually help. It can be quite annoying people telling you how you should feel when you feel nothing like that.   Have you got any friends or family who could simpy listen to your concerns and worries, it sometimes helps if you could 'let off a bit of steam' in a comfortable environment. 

I was diagnosed with stage 1a grade 3 endometrial cancer in July 2022 which was a real shock especially when I had hardly any of the risk factors. Once I started having further tests and pre op assessments etc felt I was being looked after and progress was being made towards the operation. 

Have you been given the details of your CNS - I always find them very helpful both from an emotional and practical point of view. Also, as MarmiteFan59 mentioned there is Macmillan help line available on this site.

Prior to my op I tried to continue with stuff I liked doing - meeting friends and family, doing lots of walking, theatre, going on a couple of pre arranged trips. It did take my mind of the medical side of things, plus, physically, I felt fine.

If you feel it would help, you could click on your profile name and put a but more information about yourself and your diagnosis. A lot of us have done this so you might want to read some of our experiences. x

I’m overweight too, lost a stone in 4 weeks without trying but the surgeon said this isn’t a good thing. He said you need protein to heal. Good luck with your operation. 
They suspect I have sarcoma which is petrifying but again won’t know 100% until pathology results. 
m thanks for your response xx

No grade or stage just …

looks like Sarcoma 

If we get in and see cancer in other areas can we take your bowel, liver, diaphragm etc etc

During your pre op we will mark where your Stona will be - I mean might be.

the waiting is horrendous 

I feel like I shouldn’t ring Clinical Nurses or MacMillan because I don’t 100% know I have sarcoma.

Thank you Helen, I appreciate your response x

Thank you for your response. It hasn’t helped that I’m a deputy head teacher and this all started at the beginning of the summer holidays. We’ve had to cancel our holiday and I’ve had nothing to take my mind off it. 
I feel a bit of a fraud ringing nurses and macmillan because, although likely, I don’t have a formal diagnosis xx

Hi JoanneL 

I'm sorry to read of your preliminary diagnosis and the possibility that it is sarcoma. Being angry is perfectly understandable. I remember saying that cancer came in and took over and my life got left behind. The new life was a life run to someone else's timetable (appointments etc). I remember being at work and trying to juggle fitting in scans etc. That was when I was angry because I didn't have time to be ill. It was interrupting my life. My op date came and obviously I was on sick leave from work to recover. That is when the anger stopped as I wasn't being pulled in two directions. I had to focus on myself, my health and looking after myself. This was a new concept for me as I put everyone else before myself.

Anger is one of 5 responses to bad news. These are - denial, anger, bargaining, depression and acceptance. They can come in any order. 

I sincerely hope that your surgery goes well and that things are not as bad as they seem at the moment. Best regards.

A x

Thank you. It’s good to hear from people who understand. Hope all is well for you now xx