Update following liver resection

Hi Star74

Its such a conflicting set of emotions . I so delighted your liver is still clear , you have come so far . On the other hand I am hearing curative intent again but another big procedure and in the capable hands on another set of highly skilled surgeons . And I do wish you did not have to endure that but it is good to hear you have that option .

What are your views ? Do you think you will proceed ? 
Court 

Hi court, yes, a lot to take in!  At the moment I'm proceeding with the surgery if offered, however, the nurse said the consultation is pretty brutal and does put people off, she said it took someone a couple of weeks to get over it! 

I have to aim for curative and this is what the last 18 months have all been about.  I'm scared stiff but at the same time feel incredibly lucky to be in this position. 

How are you anyway? Hope its warming up up there?!

Michelle 

It has actually been really lovely today ! . I actually found the consultation quite hard for my mum’s larger liver resection as it was so honest and I could see he was in pain to ensure my mum was fully informed . However strangely at the same time it generated this trust as I felt if he was invested at that level he would take every care possible in theatre . It helped a bit .

He actually asked me after the consultation how he had done with balancing out the risk / benefits . Such a humble dedicated man .

But like you my mum had decided before she left the room . Having started on an aggressive approach she wanted to remain on it .

I just want to Say I think you have been quite incredible throughout this as I know you are also a dedicated mum .

Have a good weekend ,

Court 

Oh that's good you've had some nice weather, it's turned cold down here and we're in for some typical Bank Holiday rain!  

Yes, I'm preparing for a very frank discussion, I suppose my main concern is the recovery afterwards, especially if the op is scheduled during the summer holidays!  I might be cheeky and ask if I could get in sooner if there's a cancellation!

Thank you court, that means a lot, I've surprised myself!!  You don't realise how strong you can be until youre faced with the unthinkable. 

We are off to Weymouth this weekend for some seaside fun!  

Have a lovely weekend. Xx

Hi Star74

Do you mind me asking if it’s a posterior exenteration that’s proposed for you? Sounded from your description that it might be. I’ve had a total pelvic exenteration so have some experience!

Sarah xx

Hi SarahH21, 

Thank you so much for getting in touch.  I haven't been given the technical term yet but I believe it's a posterior extenteration, they did say they will remove the womb, rectum and part of coccyx although they are not touching the bladder.

How long ago was yours?  I'm worried for the consultation, hope I can keep my head as I'm determined to do this!  Is there anything you can think of that I should be asking?  How has your recovery been and how have you coped with  lifestyle changes?  Sorry, loads of questions!!

Thanks again,

Michelle xx

Hi Michelle

I had my surgery in March 2020. Recovery is long and very difficult-I won’t sugar coat that- but it is done with curative intent, and my cancer was all successfully removed. Details in my profile but I was warned by others who had been through it that recovery would take a year. I started to feel better a few months out-it was exhausting. I have 2 stomas of course, because my bladder was removed. Struggled at the start finding the right products for me, but manage fine with them now.

I wear the same clothes, can eat and drink basically anything I want and I do go abroad on holiday, so those are the positives! I had no real complications after surgery, apart from a very small wound infection treated with antibiotics and dressings at home, but have never had to be re admitted to hospital for any reason since my surgery.

The consultation can potentially scare the pants off you, but my consultant knew I didn’t want more than minimal information as I didn’t want to frighten myself out of having the surgery. I do know people who have refused it through fear and didn’t want to be one of them. 

I would say I live a good life now, but have never regained the mobility and energy I had before. I know others who have done much better in that respect. But I have never once regretted doing it because I didn’t have a lot of time left without it. 

Sarah xx

Thank you Sarah, a truly inspirational story and thank you for sharing, I needed to hear that.

Sounds like you are doing really well and good to hear you have no regrets. Ah, travel abroad, I'm longing for a holiday, I would love to get away for the October half term, that may be too soon but we'll see.

Like you, I am set on the op and really don't want to be scared out of it.  The way I see it, I'm 48 this year, if I don't have it it's unlikely I will see my 50th, if I do, there's a chance I will.

All I can do now is hope the Professor will agree to it, in the meantime, I'm getting as fit and healthy as possible in preparation. 

Have a lovely weekend, and thank you.

Michelle xx

For your sake, I really hope the surgery can be offered. Yes, it’s life changing, but I prefer to say life saving. It transformed everything for me, literally, but in a good way. I tend to try and always look for the positives, and not having to get up in the night to go to the loo is a major one!

I wasn’t as fit as I could have been as I’d had a failed hysterectomy just 9 weeks before, so was still pretty weak, plus my cancer was causing considerable pain and it was hard to get effective relief. Getting as fit and healthy as you can will be hugely beneficial for you. The thought of the surgery is worse than the reality in my opinion, but they need to set out all the risks so you know worst case scenario.  My major risk was death, obviously, and that risk was quite high for me, but not as high as the 100% chance of it happening without the op.

Don’t overthink it if you can manage that. I didn’t focus on the surgery but focused on getting a successful result. I had a fantastic surgical team, who did a brilliant job, and I’m still doing well. Keep in touch, and I’ll help with anything I can based on my own experience.

Enjoy the holiday weekend! 

Sarah xx

You sound very much like me, looking for the positive in everything,  it's what has got me through this.  I continue to be positive and feel confident that I will be OK and will hopefully be in the same position as you one day offering support to others.

I'm not going to dwell too much on the op itself, I had a liver resection in Nov followed by emergency surgery a couple of days later due to a clot and internal bleeding so although I know this one is more extensive, it's given me knowledge of the process and I know I will be looked after.

You have really helped put my mind at rest, thank you! I feel much happier going into this consultation.

Enjoy the rest of the weekend, rain all day here!

Michelle xx