Radical hysterectomy in lockdown

Hi,

Has anyone been for a radical hysterectomy whilst we have been in lockdown?

I was diagnosed last week as stage 1b3 adenocarcinoma and told radical hysterectomy would be the recommendated treatment.

Just wondering what to expect, how long they keep you in for etc. And also any tips on what i should be packing for hospital.

Thanks in advance.

Amy xx

Hi

Are you having keyhole or open surgery?

x

Hi Jazza,

Consultant said it would be open surgery 

Xx

Hi Amyr17,

I hope you're doing ok. Do you have a date for the surgery yet? I've found the waiting the hardest part so I hope you're doing ok with it all and that you are feeling well supported. Let us know how you're getting on.

Lots of love,

Xx

Hi Dreamland,

Not yet no hopefully ill get the date this week. MDT is Wednesday so keeping my fingers crossed they can tell my by Friday.

Your right the waiting really is the worst part!

Hope you are doing ok.

Xx

 Hi Amy 

Sorry to hear of your diagnosis, but you've come to the right place for advice and support. I had open RH in lockdown last May, and posted a fair bit about my experience at the time. More recently, Cagney made a thread with some useful info too https://www.jostrust.org.uk/forum/cervical-cancer-%E2%80%93-treatment/preparing-abdominal-hysterectomy

I had to self isolate for 2 weeks before, which I don't think they make you do now? I had a covid test at a drive thru centre 72hr before and then I was admitted 24hr before my surgery, covid tested again, and isolated in a private room. 

I arrived at hospital 8am Wednesday, surgery was 1pm on Thursday and I was discharged 1pm on Monday. I wasn't allowed any visitors throughout this time but the days passed quickly enough. I wasn't shy about taking painkillers and napped a lot of the time. My catheter came out on Saturday morning and I showered myself on Sunday evening. 

My no1 tip and a few ladies here said it has helped them, is to get a Cushtie pillow, it was my best friend for several weeks, we were inseparable haha x

Hi feelingthefear,

Thank you so much thats great.

Ive never had to stay in hospital before so wasnt sure what to expect especially now in these crazy times.

Ill look at getting a cushtie too!

Thank you so much for replying.

Xx

Hi there! Some hospitals requires COVID test before admitting the patients in the hospital for surgery. Also, only one companion is allowed. 

Hi HockeyMilk,

Thanks for replying. I have my appointment next week so will ask about the covid test. To be honest i didnt think anyone was allowed in with me so if they say i can have someone that would be great!

 ? xx

Hi Amyr17,

How are you doing? Did you hear the result of your MDT meeting yet?

When I had my second treatment under general anaesthetic I had to take a covid test in hospital 3 days before then completely isolate until after the procedure. I hadn't had general anaesthetic before and was quite nervous about it but it was a really positive experience. The anesthesic started to work really quickly and the next thing I knew I was waking up with the whole thing complete! The staff in the hospital were great and I felt very well looked after. I hope you have a similar positive experience too.

I've had my second lletz treatment now and my nurse has informed me that I am definitely clear of any abnormalities or malignancies. It feels great to be told that. I'm now waiting to hear from the MDT on the follow-up and next steps.

I'm really looking forward to hearing your good news too. Keep us updated.

Xxxxx

Hi Dreamland,

Yes i got a call last Wednesday, they want to do the hysterectomy but leave my ovaries behind. Im assuming this is to prevent an early menopause but ill ask them about it properly when i go in to see the consultant this week.

I also had my first appointment with the fertility team on Thursday, they are looking to get me started on injections so they can remove my eggs before surgery. So that again was great news. Just waiting on a call from them this week to see when i can get started with those.

That is amazing news for you! Im so pleased the second treatment has worked, you must be so relieved. 

Thank you for the advice on the general anesthetic, to be honest i think i am more nervous about that than anything else ?. But hopefully ill have some great news like you soon ??.

Xxx

Hi Amyr17,

I'm glad to hear things are moving for you. Wishing you a speedy recovery once your treatment is complete.

Lots of love,

Xx

Thanks Dreamland xxx

Hi Amyr17,

Just wondering how you're getting on?

Sending lots of love and positive vibes.

Xxxxxx

Hi Dreamland,

Not too bad thank you, been a really busy week so feeling a bit exhausted today.

Started my fertility injections on Monday and have just increased the dose today. Also had my first scan to check how my ovaries are doing and thankfully all looks good. Have another scan on Wednesday then all being well egg removal will be on the 7th May ?

I also met with my surgeon on Wednesday, he was lovely. Had all my pre op stuff done on the day which took hours but at least its done and out of the way. My hysterectomy is booked for 25th May so have a few weeks to wait for that but atleast it isnt too long.

How are you? Have you got any further check ups or is that not for another few months now?

Thank you for checking in on me ?

xxx

Amyr17,

So glad to hear you sounding so level headed about it all. You're one strong woman!

I have been told my cancer is completely removed, which is great. I'm still waiting to hear about the follow-up. I think it'll be 3 monthly checkup with oncology and 6 month with colposcopy. I'm changing between being happy it's been found and sorted out, and worried it'll come back. But, starting counselling next week and hoping it'll help me deal with some of the anxiety.

I do feel pretty confident that the treatment and follow-up is so thorough.

Thinking of you. Good luck with the egg removal?.

Xx

 

Amyr17,

So glad to hear you sounding so level headed about it all. You're one strong woman!

I have been told my cancer is completely removed, which is great. I'm still waiting to hear about the follow-up. I think it'll be 3 monthly checkup with oncology and 6 month with colposcopy. I'm changing between being happy it's been found and sorted out, and worried it'll come back. But, starting counselling next week and hoping it'll help me deal with some of the anxiety.

I do feel pretty confident that the treatment and follow-up is so thorough.

Thinking of you. Good luck with the egg removal?.

Xx

 

Hi Dreamland,

Haha i dont feel strong all the time especially with the extra hormones im being pumped with at the minute!  ??.

The anxiety is completely normal, this all happens so quickly you feel like youve been in a whirlwind, well i do anyway! My mum had breast cancer last year and it was the same for her, she still feels a bit like that sometimes even though shes one year in remission now.

The counselling will be a great help, so thats good they have sorted that for you. Feel free to message me privately too if you ever need a rant or to let off steam.

Like you said though they are so thorough with everything so Im sure everything will be fine. 

Let me know when you hear from them and how you get on.

Lots of love xxx

 

You are my thoughts lovely. I'm so pleased to hear, everything is going smoothly with your preparation. I can't imagine how tough it must feel with the extra hormones flooding in too. Sending love and hugs xx

Thank you so much lemon lavender ?

Have a scan tomorrow so im keeping my fingers crossed that my ovaries have managed to produce enough eggs, and then get this part of my journey over with ready for the big op ?

Hope you are well ❤

Xxx