Surgery has happened!

Thanks for this update, you have certainly have been through the wars, when i was in the hospital for neck cancer i remember someone who was allergic to some dressings and had similar reactions to you until they found something more suitable. I also have a stoma in my neck so have a stick on baseplate so i can fit a filter for breathing and im allergic to one of the adhesives so have found a more sensitive option. So trial and error is the only option sometimes but as you say the medical teams are brilliant in their work so dedicated to making us as comfy as possible and cheering us up on bad days . In infections are so common after surgery and i have always been given anti-biotics after an operation, just in case. I have not had Gall Bladder cancer but my mum did and she used to tell me what she went through and what she had done. Very well done so far, day by day you will get there with good and bad days, wishing you well for your continued recovery, take care. and good luck with the shower.

                                                         Chris 

Hi Robin, sorry to read you’ve had a horrible time. I had a ropey time of it after my liver resection, I developed an infection in my wound on day 3, the pain was unbearable and was offered ketamine ha ha…

I chose not to take it as I was scared of having a horse tranquilliser in my body!! I hope you’re recovery is going in the right direction now and you are starting to feel a bit better. Just take each day as it comes and soon enough you’ll forget the difficult days after your surgery. 

Best wishes 

Colette

Thnak you everyone! I am home, and in pain, but slowly getting on top of things. I am far weaker than I ever anticipated being. I am now in that limbo state when everything has been done, all that reains is to sit and endure as my body heals itself once more.

I have not had any histology reports as yet, so whether or not this was cancer, and if so, how serious, remains to be seen. But the description the surgeon gave me suggests that if I did not have cancer of the gallbladder, I had something else very seriously wrong with it. She described great inflamation in areas, and an almost puckered and wizened look in some others. I mean, with my history, I cannot really see cancer not being the answer, but whatever it was, I am clearly going to be a lot better off without that bubbling away inside me!

After my gallbladder was removed I think they knew it was bad because I was told by the surgeon ‘it was definitely the right decision to get it removed, it really needed to come out’. A week later it was confirmed I had cancer and the rest is history as they say. So I think you’re gut instinct is probably right, but I had stage 3 gallbladder cancer and 6 months of chemo followed by nearly 5 years clear. This year it came back and was classified as stage 4 gallbladder cancer so again I’ve just finished chemo xx

I am healing. Staples come out tomorrow.

I get very breathless after a minute or so on my feet, but I know this will improve with time.

But the hard part is the excrutiating back pain I am getting. Feels like kidney stones, but I am pretty sure if I had those they would have been noticed while I was in hopsital. I am not sure if this is normal? I know I am healing inside, but should it be so painful?

Hi @stoatlord. Just wondered how you’re doing?

Take care

Karen x

Hello karen! I apologise for being absent so long, it has been a rough couple of months.

So, here's the thing. The pain I was experiencing got a lot worse. I eventually ended up in A&E again, and the doctors there gave me an option: go into hospital as an inpatient, with a possibility of being opened up again for another go, or brave the pain. They said they suspect it was fluid buildup in my liver cavity causing the problem, in which case they could drain it, but it would just return every day or so, and this was impossible to prevent. Also, they noted I did not have any infection internally. If they fitted a drain, they said the chances of an infection which would make me much sicker was greatly increased. I was unsure what was best, so spoke to my brother (also a doctor, with experience in this field) and he advised me to go home. He was sure that there were no issues needing me to be opened back up, and that the drain was a bad idea. It would not ease the problem, and just risk infection.

So, I went home, and took massive doses of painkillers. Turns out, my brother was absolutely right. It was a very unpleasant few weeks, but the situation corrected itself as my liver started proper healing. Much relief!

My fatigue is still awful, and with a combination of no gallbladder, and possibly LARS, I am having to relearn what foods I can safely eat. Slow going, but it is all working out.

And then, I got the histology report from the hospital. And it surprised me, and them, a great deal!

I did not have gall bladder or liver cancer. At all. What I had was a rather rare condition, and the surgeon admitted that he would never have expected it in a male patient my age, as it mostly crops up in women over sixty. But there you are, I am never easy...

I had xanthogranulomatous cholecystitis. Yes, it is as hard to say as it is to spell. And almost impossible to diagnose from scans, it looks exactly like gall bladder cancer. The treatment is exactly the same surgery, so in that sense, the right things happened. It just means that I do not need chemo again, for which I am abundantly grateful. Nobody could work out HOW I developed the condition. But truly, it was the better choice than a cancer metastasy!

So now I am recovering. I have just had the bloods done for my next colonoscopy review, so we shall see how that goes. It is possible, if that works out OK, that I might be able to FINALLY say I am cancer free for the first time in six or seven years - I did not get diagnosed until 2018, but the oncologists did say I had to have been growing the tumour they found for at least three or four years.

So, please cross all available outlying body parts.

I truly hope 2022 brings me that good news. And I really hope all my friends here, who have been so incredibly supportive, can have some respite too.

Thank you for chasing me, Karen. I appreciate the concern!

Robin

x

stoatlord. Wow Robin. You don’t do things by halves do you? What a horrid time you sound to have had but hopefully you are over the worst of it now and can recover slowly and carefully. I shall cross every body part I can (although waiting for a hip replacement at the minute so the legs are a no go!) and hope your colonoscopy brings good news.

Take very good care

Karen x

Hello from me too ! You have had a tough time for sure . My mum had a similar issue with liver cavity and did not go down the drainage route also . With time it too corrected itself .

Glad to hear it was not cancer but it was strange for you to develop it all the same .

All the very best and hope 2022 brings some good things your way .

Take care ,

Court 

I always try to go that extra mile... even when I am not supposed to do so for very good reasons!

Good luck with the hip replacement! I really hope it improves things for you!