How are you supposed to function when you're in so much limbo?

Hi Lizbot

It's fine to post as often as you need. I would rather someone post on here than feel they were having to handle things alone. 

I am sorry that you are still finding things really tough.

I hope that the MDT meeting tomorrow brings some clarification about what will be happening and that they contact you before Christmas so you can relax a little more. 

One thing at a time. I understand that sometimes staying in bed feels like the best option. What about a quick shower and then rest up on the sofa and watch something. A cup of tea and a bit of toast. Just thinking that you may feel worse if you stay in bed- I know I probably would. I know when I had my chemo some days I found it really hard to get up and dressed but just having a quick shower, fresh clothes and to come downstairs did help. You need to try and eat a bit- it will help with your treatment (whatever it is) .

5 weeks wait to start treatment is not unusual. I was lucky in that my surgery was 4 weeks from my first symptom however I know there are many ladies on here who have waited much longer. 

I hope that you get some answers and a plan ahead from the MDT tomorrow. 

Jane

We all have different ways of coping - for me, I needed to make my routines go on as “normally” as possible as that helped distract me and also to focus my mind on getting through. We had a dog, and he needed a couple of walks each day so I made myself do that. I also usually help low income families in my area (as a volunteer) so I told myself they still needed help, so I kept doing that. By helping them, it helped me as it took my focus off myself. They also didn’t know about my cancer so didn’t offer sympathy and I was glad of that as sympathy tends to make me feel worse and more like a victim. I didn’t want to feel like a victim so I avoided situations that might reinforce that. I also felt it important to show my adult children how to cope well with such a diagnosis in case cancer ever happened to them. I phoned my CNS every day if I needed to, and also the Macmillan helpline as often as I needed to, to take the edge off the fizzy overwhelming feeling in my head which was how my anxiety felt. I played endless word games on my tablet, and watched comedy repeats on the Dave channel late at night. I kept telling myself that countless other women had got through this and I’d find my own way through it too. And forced myself to focus on just getting through the next step, and trusting my surgeon. 

FYI timewise I was diagnosed on November 19th 2021, had my pre op assessment on 15th December 2021, and had my hysterectomy on January 22nd 2022. That’s 9 weeks from diagnosis to op/treatment. My hospital usually tries for 6-8 weeks post diagnosis for predicted low grade/stage but it went slightly over that due to consultant availability (my one needed an op himself so a new guy stepped in who was incredible) and of course Christmas. I’m sure you will feel better once you know the plan and the date.

Thank you Jane - I've actually been a short walk around the estate to deliver cards to the neighbours, and did a bit of shopping also.  Now back on the bed (although contemplating moving downstairs) having had a lorazepam, the only thing that seems to get me through right now.

My local Macmillan nurse called me this morning, she said that she has access to some of my notes and it clearly states 'curative' - and even then I'm wondering what will go wrong to change that!  I'm a mess!

You've been a marvellous support throughout this, thank you

Well done for getting out. I really hope you hear from them tomorrow re your treatment plans x

That’s amazing that you were able to keep doing all of that - at first I was making myself go for walks etc but as time goes on, I’ve become reclusive and finding it difficult to function. All I want to do is sleep. 

i’m absolutely dreading tomorrow’s call from my CNS, I’m imagining all kinds although I know this is my OCD and anxiety playing tricks on me 

as much as I’d dread surgery, I just want this womb out of me now, and asap

i don’t consider it amazing - it’s just what I needed to do to help myself. For me it was a constructive use of my energies. For some it would be right to rest, but for me, being inactive would have made me worse as I’d have had more brain space to get anxious and overthink. 

Hi Lizbot

I hope that your call from your CNS today will be good news and you will be able to relax a little bit. Sending hugs

Linda xxx

Thank you Linda, that’s very kind 

Hi Lizbot

I'm new, but rooting for you today with your CNS call.  Good luck!  What are your hobbies when you are in a happier place?  Do you have access to any of them - materials, classes etc?

Stargazer

I hadn’t updated this thread as my mental health isn’t very good at all and is getting worse if anything 

I got my call from my CNS on Christmas Eve, she opened with ‘marvellous news’ and that the second MDT had considered my MRI and determined that the surgery can go ahead at the original hospital. I don’t yet have a surgery date. She again told me that I’m going to be fine  

following the call, I was able to relax and enjoy Christmas Eve. Come Christmas morning, I’ve crashed again to the point where I am in a cycle of just sleeping, crying and ringing the crisis line and MacMillan. 

I can’t stop googling all kinds; I’m convinced it will have spread, I’m convinced it will return, or that I already have it somewhere else in my body. I am convinced that I’m going to die and leave my beautiful daughter on her own in the world 

I’m barely functioning yet there doesn’t seem to be any help for mental health. My friends and family have backed away and I feel completely alone, aside from my daughter - if it wasn’t for her, I don’t think I’d bother carrying on. My entire world and happy life has imploded. 

I’m told by the professionals that ‘this is normal’ to feel this way - I can’t even go outside the front door and I’ve stopped eating. 

not sure why I’m posting this, other than sheer terror and desperation