Stage 4 bowel cancer

Seashells

2nd (now 3rd!) liver resection cancellation - how do I deal with this?

Hi everyone, I've been off the forum for a month or so as I really needed a break from thinking about BC for a while. I had my 6th cycle of Folfox in early Dec, the results were great and I was given a date for my liver resection, had my picc line out and and was feeling really positive.

My initial date was admission on 24th for surgery on 25th Jan and although that meant a 7 week wait from my last chemo when I'd been advised 4-6 weeks I was happy and relaxed about it all.
Two weeks before this surgery date I got a call and was offered an earlier date - admission on 16th for surgery on 17th - Great!

On the morning of the 16th I was called, no ward beds available tonight but could I go in for 7am on the 17th. This involved a very early (4:30) start and nil by mouth from midnight. We turned up and I was processed through the barrage of questions, bloods, etc. I was told I was first on the list an should be in surgery by 8:30. It then became apparent that there would be a delay and eventually I was sent home at 12:30 as there were no ITU beds.

The next day I was called and offered another date - admission on the 22nd for surgery on the 23rd (today). This time I was admitted to the ward, had a very disrupted nights sleep (bloods and a painful failed attempt to put in a cannula at 2am) and again nil by mouth. Again I went through the process, told I was first on the list, changed into my gown by 8 and I waited. The surgeon then told me I should have a CT scan but didn't really explain why. This was done fairly quickly and I was back to the ward fully expecting to be in surgery quite soon. The hours passed and nothing happened. I asked the nurses and no-one had any answers. By lunchtime I was getting quite stressed, went to the desk and eventually spoke to the ward manager who said he'd contact the surgeons. Still no news although it was obvious to me by 2pm that I wasn't going to have surgery. Eventually a surgeon turned up just after 3 to confirm that my surgery was cancelled and I could go home. I asked why the CT scan and he said it was to "buy time", the scan showed the 2 liver mets are stable. I was in tears, feeling very stressed and upset at yet another cancellation. I just feel like the CT provided them with an excuse - I'm no worse so not a priority! He also advised me to make a complaint because the "management" are not getting the message about the lack of ITU beds. Before I left the hospital I called in to PALS and told them what had happened. It seems there are two levels, a query about treatment which will get a quick response or a formal complaint which takes 6-8 weeks. I went for the quick response but am now wondering if I should have escalated it? No food / drink for 24/12 hours is not conducive to rational thought.

I feel utterly devastated, I'll probably get another call and another appointment in the next few days but I really don't think I can cope with another cancellation. My only (slim) chance of a cure (yes they are still using that word) is to have a liver resection then mop up chemo. But what if my next appointment ends up like the first two. I'm not sure I'm strong enough mentally to cope and I'm convinced each cancellation is another step towards "incurable" due to stress and delay giving my cancer time to spead.

I'm sure it won't feel quite so bad in the morning but I need advice on how to cope and what, if anything, I should do now? I have to accept any appointment I'm offered but how do I make sure it will go ahead next time or prepare myself mentally if it doesn't?

GD62

Hi @Seashells lovely to hear you can't wait to get home, hope you get out soon and a speedy recovery. Like me just glad to get the liver operation out of the way and focus on getting well, have been looking at a holiday today.

Get well soon xxx

Seashells

Hi @Polly 1 even the salt and pepper don't have much taste - maybe it is my post chemo tongue? A holiday sounds like bliss @GD1962 we might try to squeeze one in before chemo. We have 3 big family birthdays to celebrate in early summer which restricts our planning a bit but does mean more cake ??? and retail therapy ???????

Liriodendron345

Excellent news @Seashells, rest up and take very good care, Kim :x::x::x:

OFJ

Really glad you have had your op and are recovering, Hope they sort out the pain meds, get well soon @Seashells , love & hugs :x::x::x:

Polly 1

Hope all is going OK @Seashells? Hopefully home now or soon anyway :x:

Baxter2

Hi @Seashells

Just wanted to send you lots of get well wishes and a big (gentle) hug! Hopefully your recovery is continuing to go smoothly.

Lots of love,

K????❤️

Seashells

I'm home, still feeling a bit sore and struggling with very painful spasms which I think are trapped wind. The nurses kept offering to bring me peppermint water to ease them but it never arrived. Has anyone on here had peppermint water and does it work? A Google search suggests it is available on private prescription only, so a bit of a faff to get if it might not work.

I think that all the cancellations are playing with my head, I kept waking up last night thinking I'd had another cancellation and am still waiting for surgery. My scars tell a different story of course. It's like I can't allow myself to believe all the nasties are in the bin just in case. Hopefully it will pass soon.

A huge thank you to everyone who has posted. :x:

Polly 1

Glad to hear you are safely home @Seashells

Baxter2

Lovely news that you’re now safely home @Seashells.

I’m sure like the physical scars, the emotional ones will take time to recover from too.

Sending lots of love,

Karen ????❤️

chris61

Wishing you a speedy recovery @Seashells. You could try Kummel instead of the peppermint water - a caraway seed liqueur that is a good digestif. Also good when mixed with vodka!???

GD62

Hi @Seashells

Great news that you are home and peppermint water is an old British Pharmacopeia nostrum which acts as a good antispasmodic and worth a trial. And peppermint tea usually weak dilution is helpful if you can't get it from chemist.

Recover well and soon :x::x::x::x:

SheliasDaughterAngela

Glad u are home amd starting to recover.
Mum used to drink lots of peppermint tea after her op as she had trapped wind, which did definitely ease it but she had it so much she has gone off it forever now lol :x::x:

Seashells

Thanks for the suggestions @SheliasDaughterAngela @GD1962 @chris61 sipping peppermint tea or any other hot drink helps temporarily. I also tried a couple of drops is peppermint oil in hot water recommended by H&B staff. The frequency of my spasms does seem to be reducing slowly.
Thank you @angepange @Polly 1 @Baxter2
Have a good week everyone! :x:

mem

Really good to hear you're now at home @Seashells and heres to a smooth recovery (once the spasms cease that is) :x::x:

Polly 1

Are you having any problems from the gas introduced during the keyhole surgery as well @Seashells? When C had keyhole bowel surgery I remember him getting pain from that until it had disappated ending up as pain in his shoulders.

LynneW

Hi @Seashells, glad to know you have had your surgery at last and that you are back home. @Polly 1 is correct about the pain going to the shoulders, it is because sometimes the diaphragm is ‘bruised slightly’ during the inflation of the abdomen. Once the wind has gone your recovery should be very quick and soon pain-free. Best of luck :x::x::x:

Seashells

I did have the "keyhole gas" shoulder pain you describe @Polly 1 but this was different. If I did manage to burp it was only tiny. That did provide some relief but the build up of trapped wind set off very painful spasms. This led to muscle tension, stronger spasms and a kind of vicious circle. I'm still getting it, not so frequent and easier to breathe through now.
I think there is a bit of internal "bruising" @LynneW I was having difficulty breathing for about 5 days even though I was up and mobile as soon as possible.
I am definitely feeling better each day. :x:

LynneW

Happy to hear that you are feeling better @Seashells, it was probably the diaphragm bruising. I had similar some years ago when I had a procedure and was surprised when I had difficulty breathing after it!
Hope you continue improving and soon be up for some salsa!!! ? ? ? :x::x::x:

Clancy

Hi @Seashells, I do hope you are feeling much better. I had no pain at all but experienced an involuntary shifting of the diaphragm similar to massive hiccups. No control over it t all. So we probably had similar feelings around the diaphragm. I did have open surgery. You sound as if you are doing really well. You watch, you will soon be back to normal. Sending best regards.:x::x: