Surviving Oesophageal Cancer

Hi Everyone

Not so good today, John has been complaining with some pain in his chest, an ECG has shown that they need to do a blood test to ensure there is no blood clot, apparently this can be common after chemo? He has also been complaining of feeling he has something in his throat and after been given a nebuliser has shifted stuff off his chest and made him sick. It has been a disturbing day, his spirits are still high and his attitude is if there are problems then the team will sort it out, I was just full of hope that after 7 days there would be no set backs now especially as he has his barium tomorrow. God I wish this was all over and he was fighting fit like he was a couple of weeks ago, Mick, Crystal I admire you so much for enduring this, how lovely in the new year if we could have an ivor lewis get together, I feel like i have known you years. I just don't know what to prepare myself for next and desperately trying to take each day as it comes. Thanks Mave for your best wishes, it's very much appreciated, I will keep you all posted as this is really helping being on here
Loving thoughts
Sal
xxxx
P.S Mick- How did you get pics on your profile? Would love to put one on of John and I xxx

Hi Sal – everything Mick says is absolutely correct. Our recovery experiences are all slightly different - I too had some difficulty swallowing after the op and also a lot of pain in my chest and in my back. Some of the pain was in the lung and ribs and right around my back as if I was being squeezed too hard. I also had a lot of pain in the gullet where they’d cut out the tumour and joined the remaining tube to the stomach. After lots of tests and xrays they upped the meds slightly. I still had to continue with the breathing exercises as this is extremely important to avoid chest infection. So although being doubled in pain I would still use that breathing exercise pump. John’s attitude is absolutely right when he says if there’s a problem they’ll sort it out. The docs are experts here and know exactly what to watch out for. Try not to worry, John’s in good hands and in good spirits.

Good luck today for the barium swallow.
Hugs to you both - Crystal xx

Hello Sally

Sorry to hear that John had a bad day yesturday, I know how frightening these things are when they happen. Ted had a clot in each lung due to the
chemo and had to have clexane injections in his stomach each day, then went on to take warferin for months, he has just been taken off this. With regards to swallowing he too had some initial problems its very early days, I understand that if it remains a problem there is a procedure they can carry out to stretch it more then once if need be. He had a lot of pain in his chest and was quite chesty for a while. The medical staff are very experienced and expect these kind ot things to happen and deal with them, he is in the best place, so try not to worry too much I'm sure he will continue to have good days and not so good days for a while, just think how much he has been through and how far he has come, good luck with the barium swallow, my thoughts are with you.

love Anne xx

Hi Sal - Things are moving along nicely and going to plan aren't they? I'm sure it's much more worrying from your perspective as it's you who has to observe John in the ICU, fastened to all these tubes and not being able to do much. I'm sure you're a huge support to him though.

From my own personal point of view I would have prefered to remain longer in the HDU than be transferred when I was to the main surgical ward. I had superb care in the HDU but was sometimes overlooked in the main ward due to overworked staff.

My tumour was stage I with no spread to lymh nodes. You read all sorts of things about this 5 year survival rate and whilst the stats aren't good many patients do live long lives. I personally don't even think about it, I just get on with things on a daily basis and am doing quite well.

Just put on your face, as I did in ICU LOL, and go give John a big hug from me. Sounds like he's doing ok.

Love - Crystal xx

Hi Sally

Really pleased you got some good news and things are coming along. I don't remember them saying what stage Teds tumour was when it was diagnosed and at the time we were too scared to ask but when they did the tests they said it had not spread to his lungs or stomach and after the OP they told us that although no 100% guarentees the lymph nodes that were removed for testing were all clear. As far as follow up appointments they have not carried out any tests which we thought they would do he has to go every 3 months and ask how things are going and how he is feeling. Don't look to much at the statistics, I too was concerned when I read all that stuff then heard of people who have had the op and gone on to live long lives just concentrate on getting John home and gettng on with your lives.

love Anne xx

With half opened eyes i post this, i feel totally shattered this evening. Good news in the fact the swallow test was all good, all nicely attached and no leaks so John is currently on 30ml of water each hour in little sips. When I went today John told me he was crying like a baby in pain last night and even screamed once or twice it was awful to hear but apparently the epidural had come loose. He has been moved to a ward this afternoon and yes Crystal i feel like you did that it is all too soon there are not as many nurses and the attention is not as quick so i was rushing around getting extra pillows and sponge wipes for his mouth. He has been in some pain and discomfort today but is currently taking tramadol for the pain and we spent ages with deep breathing excercises to help ease the pain, just hope i can sleep tonight as i feel wrecked. Apart from a the oxygen tube he just has the cathater in place now and was lovely to be able to cuddle him earlier. I'm about to call the hospital to see if he has settled for the night. Will post tomorrow, take good care

love always

Sal

P.s Thanks to you all for posting i really appreciate it xxxxxxxx