Post-op, so what happens now?

Hi NewbieAndi,

I'm surprised you were not assigned a CNS (clinical nurse specialist) when you were diagnosed. Although I never contacted her, its useful to be able to know that you can contact her if necessary. 

I was given a little booklet as I was discharged from hospital, but that was pre-Covid days. It basically said to walk every day, slowly increasing the time you are on your feet. The first time tried I just went round our block, and that was enough and I had husband with me, in case. Remember wherever you go, you have got to get back, so allow for that. I just increased the time I was out by 5 mins every couple of days. The consultant said I should be back to pre operation fitness in 3 months and in my case that was about right. Bending was painful for a long time and I used to kneel first ! I even did a bit of garden weeding kneeling down after about a week. I just had to do something 'normal.'

I think the hospital contacted me to go back for results, and was told I needed no more treatment, which was a huge relief! I was 1A.

Take it easy and go carefully. Its not worth risking not healing well. When resting put your legs up. xxxxxx

Hi NewbieAmdi,  I’m surprised you haven’t been given a CNS nurse, did they give you contact numbers for anyone? Maybe your consultants secretary can give you the information?  It’s very helpful to have someone to turn to when you have questions as they can often set your mind at rest straight away.

I got loads of info from my consultant including a very helpful leaflet produced by Royal College of Obstetricians and Gynaecologists which you can find here

 www.rcog.org.uk/.../abdominal-hysterectomy.pdf

it gives lots of general info about the op and at the end there is a chart of recovery week by week. My consultant said if you have open surgery rather than keyhole you can double all the timescales.  Of course everyone recovers at a different rate, so do what feels comfortable.  I was fit and well before my op and recovered very quickly.  I was told to wear my anti clotting socks for four weeks, the same amount of time I had to take the injections. I was also told to inject into the top of my leg rather than into my stomach, as it can cause a lot of bruising. So might be worth checking that out too.

Histology usually takes two to three weeks. That’s when they can tell you what Stage your cancer is at, and the Grade. Usually the MDT ( Multi Disciplinary Team) discuss the results beforehand and plan what happens next, more treatment or no further treatment except check ups.  Let’s hope it’s the latter.  Hope this helps

Viv x

Thank you. I had to ask for preop information but I’ve had nothing else. I’ve not been given any contact information for CNS either, I thought maybe not everyone was assigned one. 

Thank you, that info is very helpful. It’s difficult to know if I’m doing the right or wrong things at the right time. I’ve tried to contact the surgeons secretary but it’s just an answerphone, so I’m hoping she’ll call back.

Hi NewbieAndi,

I thought everyone who had cancer would be assigned a CNS. When my husband had throat cancer the CNS was very helpful to us. We had various things happen and she either got us into a clinic to be sorted out, or told us what to do. If you manage to speak to anyone, ask about it. 

The little book Jigsaw has pointed out to you sounds very much like mine. I worked on the principal that if I wanted to do something, I did it. But if I ached or hurt I stopped and put my feet up for a bit. You are better to get moving, but within reason. xxxx 

Hi NewbieAndi

That's very odd not to assigned a CNS, I've got 2 - one at the hospital where I had my surgeon consult and ultimately had the op and one back in my home county where my Oncologist is. I would contact your surgeon's secretary - they should be able to help and get one assigned to you. My experience with surgeon's secretaries they're really helpful. 

You should wear the TEDS stockings for 4 weeks, the same length of time for the anti-clotting injections - makes sense when you think about it. So despite the fact they're horrible, stick with them - also keep your legs warm! 

Normally you will be contacted 2/3 weeks after surgery to be given histology results which will be more accurate at staging your cancer (MRI & CT scans only reveal so much) That's when your Oncologist will explain what treatment be given.

As for the questions, write them all down, you won't remember what to ask when you see the Oncologist.

Big hugs to you, Barb xx 

Thank you. His secretary is not available until next week and no one else is covering for her, so I’ll have to wait to get any answers. I should know better, as a nurse, but I’m imagining all kinds of stupid things. I’m usually quite active, so managing short walks up to now, but terrified I’ll overdo it. I suppose everyone is right, my body will tell me if I’m doing too much.

Just having a down day I suppose x

Sorry, I've just made the connection (another senior moment) can't believe you've had so little after care info, surely as a nurse, they don't expect you to automatically know what to do and expect! That's incredible but with my own treatment, I can't knock our wonderful NHS. 

Hard to say don't worry but we all do. As to what our imaginations get up to, well that's another story. I was climbing the walls with worry but coming on this forum was so helpful - there's always someone around and nearly always someone who's in the same situation as you.

I've reverted back to being my normal self, nearly 3 months post op and a month post Brachytherapy. But there's a  difference - I'm more emotional now and value things I took for granted more. Hopefully a better person. I've always admired the selfless attitude of the nursing profession - I couldn't do it! Speadsheets and statistics were my bag!

Your body will tell you if you overdo it - the most important thing I found was not to attempt to lift anything heavy even the kettle and if you go for a walk make it on level ground. I went for a walk on the beach and found it very hard going.

Big hugs to you, Barb xx

Hi NewbieAndi

I think everyone recovers at a different rate, depending on general health before the op.  I found the RCOG leaflet that Jigsaw33 mentions to be really useful., especially the recovery chart.  I think I was given a copy on discharge but I'd already downloaded it in advance anyway.   I was given a contact number for a CNS and had a phone call from her immediately after diagnosis but then didn't see or hear from her again.  I'd expected to meet her whilst I was in hospital but I was on a general gynae ward, rather than oncology unit, and she was never around.

As others have said, I think the main think is not to lift anything much in the initial weeks of recovery.  I was happy to give up hoovering and other housework for a while!  Walking is definitely the best exercise but I was told to avoid the gym, swimming, dancing etc for at least 6 weeks.  I found that timescale was about right but your body will tell you if you are overdoing it.

Two to three weeks for the histology results is usually about right and I'm sure they'll be anxious to let you know your final Stage/Grade before Christmas so you know where you stand.   Hopefully you'll be 1a like me and no further treatment needed.

I'm sure your experience of the operation and recovery will make you an even better nurse in future, now that you've seen things from the patient's point of view!

xx

Thank you, good advice & much appreciated. As this is my second cancer in 10 years I think I’m just panicking.
TBH I always give my cancer patients contact details for support or questions, so just finding it a bit difficult when I’m not getting the same myself. I have to switch my nurse head off and remember I’m the patient, which can be difficult.