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Have surgery date and falling to pieces!!

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Charlotte290
Have surgery date and falling to pieces!!

Hi everyone- 

I finally have my surgery date- 16th September so not long to go. Since I had it- I am completely falling to pieces! I'm so anxious it's debilitating. Don't know what to do with myself at all. I wake up every morning- am hit with this overwhelming feeling. Then comes the nausea, sheer panic, aches & pains and just feel utterly terrible. It's no way to live, that's for sure!! 
I am so irrationally terrified of an operation it's bordering on pathetic!! I feel faint just thinking about it- and don't know at all how I am going to get through it! 
I faint at the sight of a needle- I feel physically sick (and am sick a few times a day!) with constant worry.

my doctor has me on propranolol, have been on it for about 4 weeks now- it's taking the edge of, ie- I am no longer convulsing in fear! But- I'm struggling BIG TIME!! I'm scared of absolutely everything! 

I've written a few posts about pains in my back- thought I was completely riddled- ended up staged at 1b2 until they've checked lymph nodes. I still very much have those pains, and a strong period like pain that comes and goes. Because of my back pain, and where it is (exactly the spot for a spinal!) I decided to just go down the morphine route. I spoke to a few women in a fb group who had morphine and they were fine, didnt wake up in pain or anything- but yesterday, met an anaesthetist who said, exact words- if you don't have the spinal, you will wake up in a lot of pain!! 
so now I'm super anxious about that too!! Everyone I've spoken to has said different- obviously I'm not expecting to feel 100% afterwards, or for some time in fact- but I don't want to wake in a lot of pain at all- I will freak out! 

Has anyone here had a radical hysterectomy, vertical incision with lymph removal with just the morphine on demand!? Please tell me your thoughts if so- 

 

also- any tips on how to calm myself? I'm speaking to a few people who have been through it, and everyone has said it's not as bad as they imagined etc- everyone is actually pretty positive... but I can't seem to take that in, my brain just decides that everything is doom and gloom, and I'm really not coping at all. 
I have the most wonderful life, I'm so incredibly happily married, have 4 beautiful children and could want for nothing. Yet this anxiety is so bad and the way I feel, so incredibly low that I've actually had some extremely dark thoughts.

I am so scared. So so scared and just don't know what to do with myself. I know that they can give something to take the edge off when you get there- does it actually work!? I have no faith in anything taking this fear away in the slightest.

I am also scared of how I will be afterwards! I am quite a dramatic person in general (ha!) but with anything medical- I don't cope well at all! I worry that it's all going to be unbearable for me. 

Wanted to add- the needle thing... I am slightly ahead of the game and begged my consultant to organise tablets instead of the injections afterwards- which he has agreed to! 
I also requested dissolvable stitches and glue instead of staples- again he has agreed. 

two huge positives- doesn't make it any better right now :( 

I can't see anything in a good light

 

As you can probably tell- I am in quite a bad place! 
Sorry for the negativity! I am usually so optimistic and full of life- wish I could get her back! 

Charlotte x

 

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

Jazza
Jazza's picture

Hi

Sorry you are struggling a lot with this part of the 'journey'.  My radical hysterectomy was done laparascopically so my experience is possibly not too relevant here  but I refused the spinal (epidural) anaesthetic and pain wise I was fine.   I was dosed up with painkillers whilst in hospital but I was only there for one night and once I got home I was off all the 'heavy duty' painkilllers within a day or two because I didn't need them. 

In terms of the run up to the operation I dealt with my anxiety by keeping ultra busy.  I had a full time very demanding fast paced job at the time and worked up until the day before my surgery, which helped  a lot to keep my mind off things.  If I did start to get morose or anxious whilst at home I just did things like cleaning to dissipate any nervous energy.  I also called the Jo's helpline a couple of times  - it was grounding to hear the voice of someone who could understand my situation. Not saying I found it easy but it all helped to get me through it.

I think you are better informed about the process than I was - I wasn't involved in any social media at the time - not even this forum.  The first I knew about the post op injections was when I was on the ward and the nurse came and told me to watch what she did as that was going to be my job for the next 28 days!  On the plus side I hadn't had the opportunity to worry about it beforehand, albeit I was somewhat aghast that such things would be expected of a patient! 

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) squamous cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Lisa_xox

Hi Charlotte 

So sorry your having yo go through all this, I dont really have to much information on your situation, but I can assure you that you can do this! Im 7 weeks post op now and looking back its all been such a whirlwind. 

In regards to you having a spinal, I did infact have this and yes woke up with no pain whatsoever, but i was soon to learn it didnt agree with me, it made my blood pressure extremely low and due to fainting and sickness I had to come off it the following morning. Now at this point I was terrified. I had sommert stuck in my back that yeah made me feel shitty but as a positive I felt no pain whatsoever, and the thought of that being stopped and me feeling any sort of pain I couldn't cope with. Well long story short they stopped the epidural 12 hours post surgery and guess what....i was fine! No extra pain just extra meds to keep on top of everything.

Any questions you may have feel free to message me,  just remember your taking control of this xxx

27.05.2020 attended nurse apt due to unable to feel coil strings and slightly heavier than normal discharge

03.06.2020 colposcopy apt

10.06.2020 apt made for results (welcome to cc club)

15.06.2020 MRI scan

18.06.2020 MDT stage 1b2

25.06.2020 apt to meet surgeon and discuss treatment

15.07.2020 radical hysterectomy 

06.08.2020 no further treatment needed, follow up in 3 months

 

rufus

Hi Charlotte,

I had a radical hysterectomy (horizontal incision) a few months ago. I didn't want the spinal unless they could put me out first. This is not possible so I went without.  The anaesthetist said they gave me a different painkiller during the op. I was ok with the morphine and was discharged 2 days after my op.  It is completely doable.  Once you walk into the hospital you put yourself in their hands and they will look after you.  
It is normal to be nervous, but you will be ok. 

The wait is always the worst bit. I agree with Jazza about keeping busy.  It kept me sane in the run up to the op.  
xx

Lletz under GA on 19/3/20, mri on 21/3, Results cc: stage 1b no sign of lymph involvement. 18/4/20 Radical hysterectomy with lymph node removal 6/5/20 Histology shows microscopic Involvement 2 nodes. Moved to stage 3c. Chemo rads completed 10/7/20 Brachy 14/7 Done!

Charlotte290

Thank you all for answering and sharing your stories. 
I am feeling a lot better today- I think I will always be nervous and feel anxious about this- but someone told me to try some visualisation- so I am vividly imagining waking up, not in pain and smiling- then having another sleep. It probably sounds completely bonkers- but every time I spiral, I'm trying to take myself to that point- and it seems to be making me slightly calmer! 
Really promising to hear that some didn't have the spinal, or not for long and you were ok- I feel like I need constant reassurance! 
I honestly don't know how I would have coped over the last few months without this site- it is truly incredible.

 

Thank you for helping- I'm sure I'll be back with some more gripes and worries, but I really am trying to keep calm(ish!!)

 

love to all x

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

FeelingTheFear

Hi charlotte 

So glad you're feeling a bit more grounded. I know we have shared some messages back and forward and I very much understand and remember how this part feels

I think all of us had moments where we thought we would not cope but somehow we get through! You will too! X

Feb 2020: smear = high grade dyskariosis

March 2020: biopsy = CIN3

April 2020: lletz = cervical cancer stage 1b1 (1b2 on new FIGO)

May 2020: radical hysterectomy and lymphadenectomy. NED!

September 2020: first follow up. NED!

Cagney

Charlotte it's not irrational, and it's not bordering on pathetic. Of course you're terrified. I was terrified and my little LLETZ was a walk in the park compared to what you're confronting. But you put a hand out to me while I was falling apart and it really really helped.

The fear is normal and appalling as it is, it's not negative or silly or a failing in any way. Some of the fear is in the mind as you're facing such a difficult and unknown challenge - and some of the fear is in your body as your muscles tense up and your breathing gets shallow. I have no suggestion for taking away the fear in your mind - getting past this point and getting answers and hopefully good ones will deal with that, but for the fear in your body there's lots you can do to try and ease it a bit. There's a thing called the Mitchell Method of Physological Relaxation - designed by a physiotherapist - I learned it years ago when I worked for the charity Mind. It's a way of helping your body to let go a bit of the tensions that arise from and cause stress - https://pogp.csp.org.uk/system/files/publication_files/POGP-Mitchell%202017.pdf. I have remembered it and used it all my life in all kinds of situations. It really helps you be more aware of the tension in your body and gives you a way of reducing it which in turn takes the edge off the stress/anxiety. Maybe it can help you through this awful time. You don't have to lie down, no whale music or stuff like that. And once you've learned it it's very portable, you can just call on it sitting on a bus, driving the car, walking down the street to just release tension in any part of your body whick takes some of the heat out of what's boiling up in your head. 

I also found it really helpful a few years ago when I had a really bad spell of depression and anxiety to listen to some guided relaxation by The Honest Guys on Youtube - they're English and I really couldn't tolerate American or Australian accents while I was in that wound up state so it was helpful to find English voices. I still use them now sometimes. Just a few minutes of stillness while it feels like the world is on fire around you.

And scream! When your body feels like one great big scream on legs, let it out - if you don't want to disturb the neighbours or frighten the cat, bury your face in a pillow or a cushion and scream into it and scream till you're finished screaming. As I understand it (and I'm not a medical professional) the stress makes you breath too quickly and too shallow, and you end up with too much oxygen, and screaming helps you flush out your lungs and get a balance back. 

If this helps I'm really glad but mostly I look forward to when the storm passes and you find that optimistic full of life person who's still there but hiding deep inside you right now

xxxxxxx

Charlotte290

Feeling the fear- you've been such a huge help to me as you know :) 

Thank you Cagney- some great tips- I will definitely give it all a try! Very kind of you. I do hope that you need no further treatment- and never have to board this journey in the way we have! 

Thank you all 💕 xxx

07.08.20 diagnosed with squamous cell 1b2 cc

16.09.20 radical hysterectomy 

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Treatments for cervical cancer