Surviving Oesophageal Cancer

Thanks Sally!

You sound very assured and experienced despite only being 3 weeks or so ahead of us in this battle. And I hope your John continues to improve.

Frank has been out of bed the last couple of days, though not really walking yet, and taking sips of water. He's had a slightly raised temperature and a bit of congestion on one lung, so he's been given antibiotics to clear up any infection.

The doctors seem pleased with his progress though.

He's had a couple of the drains removed though still has more tubes and things connected. He's beginning to hate his oxygen lines and the tube down his nose. Maybe his irritation is a sign that he's recovering!

He showed me the scar on his tummy tonight - the dressing has been removed - I suppose that's to let the air get to it and help with the healing. But it looks like something from a Frankenstein movie with all the metal clips. The other one on his right side is still covered.

He's hoping to move from intensive care over the weekend, which will mean he can have more visitors. He got it into his head that it might be today, but that turned out to be overoptimistic. It's his birthday too - 44 today. He was a bit disappointed not to be able to get his cards, but we agree that having this operation was the best birthday present he could have. And it will be a while before he can have any cake.

I've told him about this forum and will be encouraging him to join himself once he's out of hospital.

Thanks again for all the good wishes, and all the best to everyone on here.

Michael

Hi, haven't posted lately but I've been having a quick read of the thread to keep up to date. Kev's improving all the time now, eating bit more, not so tired and able to walk a bit further, got appointment with specialist thursday. I'm back at work now so at least we got a little bit of 'normality' back

Sally- hows John doing?

Michael - hope Frank is continuing to improve

Jo x

Hi Michael, my hubby was under Mr Senapati for his operation in May 2008 - he's a great no nonsense type of surgeon and I think you are in good hands. Hope all goes well for you both.
Karen x

Hi All
My mom had a mini stroke last week hence me not being around, it's been tough juggling everything around although she is home now and making good progress I just can't believe what has been going on in my life the last few months, roll on 2009 surely it can only get better.

Michael- I'm really pleased Frank is doing okay, I agree with the scarring, Johns tummy one looks like a thermometer now the clips are out although the one on the right side is more severe but he is doing just great, I have found the hardest part adjusting to the eating as he either eats too much and is on the toilet for hours or not enough and is hungry! I bet Frank is now out of ICU and is doing even better although it can seem daunting in recovery ward as seem to be more on your own, I bet you cannot wait to get him home and look after him there. Hope you too are having some quality time

Jo- I'm so glad Kev is doing well, John too is eating a bit more and not so breathless, he lost 9lb after the op and although very early stages has gained a pound this week! Everything is crossed for you tomorrow, I will be thinking of you both, we are still awaiting our appointment. Hope work is going ok, although you feel a bit guilty about leaving them it does help to get back to some form of normality.

Crystal,Mick-Hope you are both well, still need your help! LOL! John is still taking tramadol 3 times a day (i got a repeat prescription) and also paracetamol 4 times a day and was wondering how you both cut the pain relief down?

Love and hugs to you all
Sal
xxxxx

Sally W, Hi my name is Karen and my Hubby had the ivor lewis op in May. He wouldn't take his painkillers when he came home and was in a lot of unnecessary pain ... my view is don't worry about the pain killers just take them and you will know when to come off them ... if they help use them for now, it's early days. Funny, I was talking to a chap at Christies the other month and he said 'no I don't have any pain now' then went on to say that he'd been on morphine for the last 5 years (I thought it was quite funny really).
Take care x

Hello Sal,

Karen's right, take them as long as you need them is what I'd say. I still get a lot of pain around the scar tissue, I think it's the nerves regenerating and can sting a bit. There are also areas that are tender to the touch.

I was told that the only way they can judge pain is by what effect the medication has. e.g I was on Paracetamol AND Tramadol in hospital. When I came home I stopped taking the tramadol unless the paracetamaol didn't have any effect. The Doc said that as Tram is stronger, then if a pain cured by paracetamol was a 3 out of 10 pain, then one cured by Tram is a 6 out of 10 pain. Morphine is for any pain over 6 and then it is judged on dosage.

When I was on the morphine I must have worn out the DIY dose delivery system !

Pain management is an important issue and if you are in pain then it drains you and makes recovery more difficult.
Don't worry, they have shown benefits in taking daily doses of paracetamol.

Hope all the post op lot are doing well .........and you carers are pampering them !!!....... \;0)........

Mick
xx

Hi everyone,

It's really interesting to read all your thoughts on pain relief. Frank is definitely going to be taking his painkillers as long as he needs them - he's not the 'martyr' type really.

He's still doing really well, though has had a couple of 'off' days. He's now off all his tubes and is on cocodamol, which is reducing his pain a lot (when he was first taken off the epidural he was in quite bad pain for a few hours).

He's also been eating a little yesterday and today, starting with soup. But this morning he had some breakfast cereal, more soup for lunch and some omelette for dinner. He's not eating large amounts but is pleased he is able to. And he's even more pleased that he can now go to the bathroom and not have to use a catheter. He's walking short distances around the ward too. And he might be home on Saturday! I got a bit of a shock as he was told that yesterday afternoon, when he really wasn't feeling up to much. But today he's much more positive. It seems incredibly quick to be out and about after such a serious operation.

One of my friends came over to see him the other day, she has two friends who have the same cancer. One (a farmer up in the Lake district) is on his fifth session of chemo as he has secondaries, the other (a woman in Harrogate) is booked for the same operation as Frank has just had on Monday. She is passing on news of how Frank is doing to show that it is bearable and that there is hope at the end of it all.

I certainly have great respect for the surgeons who carry out these operations, the anaesthetists who manage the pain relief and the nurses who do the day-to-day aftercare.

Love to all

Michael

Great news Michael. They will let him out as soon as his 'functions' are working and as long as there is someone to help him at home. He's doing the best thing possible walking about, it will get his bits working now that his gullet hasn't got and constricting muscles to work the food down. Make him aware of 'dumping syndrome' as well as when he starts eating 'normal (ish)' meals it will happen and it's a bit scary first tie. Did yo have a look at the OPA site ?

Anyway, give him my regards and best wishes.
Mick