Surviving Oesophageal Cancer

Agree with Sue re tipples - I needed a few!

Shaun was also agitated early days after sedation!

Now he is home we have new worries - he was so sick in the night and we are worried that he won't get enough nutrition with eating only tiny amounts.

But - we must keep plodding on.

Luck and love tp all

xxxxx

So sorry to hear that Shaun has been poorly.  It must be very frightening now he is home and you dont have the security of the hospital.  I do hope that hes feeling better now and you are coping ok

Hub was very mischievious yesterday and much brighter although wanted me to drive him home and was still hallucinating.  Today hes been much less agitated but is fed up now.  The physio did get him to sit on the edge of the bed today and he is officially the longest person that has been in ICU (whilst we have been there obviously!!).  Hes keen to get some of the tubes out but no chance of that until next week so just trying to get him ways of communicating.  He seemed unable to point to letter to make up words today which was a little alarming but we are taking his Ipad in tomorrow to see if he can type any better!

Love to all xx

My husband had loads of hallucations!! From the surgeon bringing his whole big family in to work in ICU, to the nurses eating falafel at his bed!!! He also gave me back his wedding ring and told me to go...(He was shocked when I returned a couple of hours later with his ring - I told him I had taken it home to clean it, as he had no memory of giving it to me)  I think the strong drugs just take along time to get out of the body! 

I also know what it's like to see everyone else leave ICU. There was a really old man of about 95 who arrived after my husband and left way before him!!!

Good luck! Thinking of you!  xxxxxxxxxxxxx

Love to everyone else reading this today.xxx

(My husband is doing well on his radio/chemo except he now has 3 different coughs!! One from the operation/being on the ventilator. One from a basic cold. And one from radiotherapy. Amazingly he's in good sprits and is happy and cheerful reading lots of Saturday papers with cups of tea today

Thanks so much for your reply Samantha, just what I needed today as had another horrendous day!  He was agitated again (thought we had passed that phase) but also angry with it.  Tried to get up and go again several times, looked at me with pure hatred and thought if he could have hit me he would.  If looks could have killed..  I KNEW it was going to happen but when Ive sat hours and hours by his bedside, seeing him behave this way has really upset me.  I walked out twice and couldnt face going back to say goodbye.  Feel so weary but am trying to remain strong as such a long way to go.  They got him in a chair for the first time today for half an hour but had to turn up vent settings as it made him so tired. Im hitting the brandy tonight and going to try and get an early night.

xxxx

Hi Barcardigirl and Samantha

Of course they are angry, their lives have been messed up!  Unfortunately some of those drugs can make them much worse, particularly steroids.  My husband kept buying stuff we didn't need at the beginning of each chemo cycle this year as he was so hyped up.  My friend who's a doctor mentioned it probably was the steroids.He also can become quite nasty at times even now, but then he could be unpleasant before all this started too, as can we all!  They don't turn into grateful saints even though we are expected to (and do) care for them unselfishly.

I just try to remind myself when he is being difficult that it is so very much worse for him, take a deep breath and pour myself another drink!

Big hugs

Sue x

Go for the brandy bacardiwoman - mine was whiskey and it did help.  Hope hubby settles more for tomorrow.

 I was told to be quiet once too.  He v tired today n not eating much, will try to get him in the fresh air moz.  No more being sick but he fells it sometimes.  

I find it strange wanting to have a meal when he can't join me in the munching - its like we lost our usual lives n want it back!

Love to everyone on here - this site has been a strength.

xx

Another fun packed day yesterday when he thought there were three dogs running around ICU but today - hoorah - he is much better although I have discovered he is on some medication to help with the hallucinations!  He has sat in a chair for the morning and has actually had the ventilator switched off for the afternoon to see how he copes on his own.  If he gets on ok (and only one dodgy moment so far when he panicked after a major coughing fit) he can have trachie removed in next day or two! Hoping we have finally turned a corner and can get back on the road to recovery.  He also has cellulitis so they are keeping an eye on that and hes back on antibiotics for it but hoping that will go ok.

Big hugs to my lovely supportive friends as ever xxx

Hi Bacardiwoman

It sounds as though your husband is making progress now and once those three dogs have gone, I’m sure he’ll be feeling much better.  My hallucination was a 5 foot 8 inch acid green Donald Duck who informed me that he and I were co-creators of the universe and that reality was merely an illusion which we created together, but which ceased to exist when it wasn’t being observed, much like the Schrodingers Cat paradox in quantum physics.  After telling me that, he said he really wouldn’t be hanging around the ICU for too long as he didn’t care for the environment and besides which, he had to baby sit his nephews Huey, Dewey and Louie.  So, although these hallucinations seemed bizarre, we can get back to normal – the new normal Lol.   I hope this cheered you up a little, and I do assure you, I’m pretty well normal now.

I hope you see a big improvement this week.

Love and Hugs

Crystal xx

Ha Ha Crystal!! Your post made me laugh!!!  Im pleased to hear you are back to normal now LOL!

He was pretty calm Monday and Tuesday but yesterday and today hes back hallucinating and confused talking about all weird things but normall in between - hope its not long lasting as been going on almost two weeks now!!

Hes had the trachy out yesterday and several of his tubes, just got the feeding drain, and a line in his arm.  He has cellulitis in his arm which is being monitored and treated and they have apologised for him having this.  Hes walked about 8m with a zimmer - well I say walk - shuffled!  Not eating yet but sipping water and coffee, hopefully starting on soup and ice cream tomomrrow and possibly moving out of ICU to a ward.  Three weeks today since his op so been a very long haul.

Consultant been to see him today and said that 26 lymph nodes were affected which seems to be an awful lot??  They are mentioning him starting chemo again in a month - surely he wont be fit enough for it by then?  Does anyone have any info about the lymph nodes situation please?

Love to all, hope you are all doing well xxxx

Hi Bacardi

Sorry to hear you are still in the ICU but at least he's making progress.  My husband had a lot of affected lymph nodes too and they didn't give him chemo after the op (op was four and a half years ago). I wish they had as it came back 2 years ago and again in February  Still he's fine at the moment but I do wonder if a good dose of chemo after the op would have prevented the recurrences.  They seem to have changed their modus operandi and I think it's for the best.  They won't give him the chemo if he can't cope.  I do hope you are managing.

It is very tough on the 'carers' but we seem to gather our strength from somewhere.

Sending love and hugs to you and everyone in Mac-Land

Sue x