How do you all cope?

Hi Rach. It will be 5 weeks next Tuesday since I had robotic keyhole surgery and I have had to contact my CSN a couple of times to check if pain and swelling is normal.  I seem to have a few good days then overdo things usually too much walking and then I feel like my recovery has gone backwards and I am back on painkillers. 
I still have trapped wind occasionally and have either a peppermint tea or ginger cordial to help relieve it.  As you had open surgery your recovery time will be longer so please try to take things slowly and be kind to yourself.  If you have pain which continues for a couple of days phone your CSN if only for reassurance.  There is a lot of internal and external healing to take place.  I know just how frightened I feel at the moment as I am still waiting for my histology results-it is a very worrying time so I just want you to know that you are not alone.  Sending you a hug 

Thank you for your reply Walkingladythe niggling pains seem to move about so feel like possibly trapped wind.  It only started yesterday after not being able to go for a poo at all on Friday.  I have also started chemotherapy at the end of December so not sure if it is related to that. I may call my nurse tomorrow and ask her what she thinks.  I’m probably overthinking it all, the pains aren’t bad and they don’t stop me doing anything so hopefully it’s just wind and still recovering.  I must admit I feel fine so forget I have had a major operation and I haven’t really been taking it easy x

Hi Rach_E. It's all perfectly normal. You've had things moved aside and taken out. it's a major op and you're still healing inside. Just follow the advice and avoid lifting and bending. The good thing is the nurses never seem to mind if you call them, they've always got time to reassure you.

Hugs, Barb xx

Hi Rach E,

8 weeks is not long after a major operation, and providing the pain isn't too bad I think you have to expect some. I found I just put my feet up if I had pains. I'd say it took me 3 months to get my fitness back. 

I did have funny pains in my tummy. It felt like a worm crawling under my skin!!! As I had had Shingles I knew it was nerve endings knitting together.!!!!  Good luck xxx

One of my nurses told me the first year is the worst. You just have to be patient. It takes many months for things to heal properly. I found a lot of the pain I was experiencing was to do with my bowel, no doubt irritated by the brachytherapy. You will naturally feel a lot of niggles which is just the healing process

Hi Rach,

I'm 15 months post-op and have had nerve pains in left thigh/groin since the day of my hysterectomy. Mostly irritating rather than truly painful but I often worry that it's the start of lymphoedema. I've mentioned it at review meetings but consultants seem unconcerned. Surgery is a major trauma to our body so some side effects may be the outcome - I don't really know how you know what is a pain to worry about or not (one consultant said that if painkillers didn't help then it might be a recurrence).

Best wishes,
Dx

Hi Rach  It is good to hear that your chemo hasn’t been too bad but I am sure that you will be glad when it’s all done with.  How many cycles do you have to have? It is nearly 8 weeks since my op and I started to have a small amount of bleeding a couple of days ago.  I spoke to my CSN who wasn’t concerned as it is still early days.  I have been doing a lot this week-walking about 6 miles a day and rightly or wrongly I helped to move some things and carry boxes for my mum !  Is is good to know that the CSNs are there to answer so many questions.  Take care xx

Yeh will be glad when it is done, I am having 6 altogether.  My 3rd one is on 14th February then I see my oncologist on 17th then my midway scan on 19th.  It’s been nearly 12 weeks now since my surgery and things seem better but think I still over do it, think because you feel ok you forget that you need to take it easy I know I did lol. X

Hi Rach, can I ask about your CT scans please. 

I had a CT scan before my hysterectomy and my second CT scan was a couple of weeks after my first chemo session (but this CT scan was delayed a little I think due to the more urgent requirements at the hospital of some other patients) so I'm wondering when my next CT scan will be and whether I will have a midway CT scan too?  Or each hospital may be different and it could be dependent on our individual circumstances.  

Did you have a CT scan just prior to starting your chemo or will your midway scan be your first one since surgery? xx 

Hi Sarah,

The only CT scan I have had up to now was the one I had when I was first diagnosed after I had my biopsy and then the next one will be on the 19th half way through my treatment.  I was told they would just go off the scan I had initially and compare it with the new one.  I assume each hospital has it’s own way of working but you may possibly have a midway one, could always ask your team. X