Good Morning All

Hi Charles

You are up bright and early too.  I always get up at 6am every day, as I think it’s the best time of the day.

It was a really disappointing result for Man U, a great goal from Rooney, but as you say there is always next year and lots of matches before then. 

Fingers crossed that the Company doctors will say all is well to go back home to China.  Is that a permanent home or does your job mean that you move from time to time?  Anyway, I wish you all the very best and in the meantime keep up the walking and cycling in the countryside.

Love

Crystal xx

PS: I’ve been having difficulty posting on the Mac site for a while, so if any of my posts repeat themselves later on, it’s not me being funny.  The other day I received 30 emails, not only in triplicate, but of posts that I could not post so had to re-send.  I thought I’d better mention this in case the Man U post reappears. Lol.

Crystal

I'm an early bird too - I love hearing the dawn chorus and seeing the early light, and it's a peaceful time to myself which I enjoy.  I think tho the chemo might still be getting me up even earlier than normal as I am waking up at different hours every day.  Happily I feel like the chemo effect is fading fast and I feel more 'normal' every day.  

China's home for now as that's where I work currently, been there 3 years and would expect to stay a little longer and then who knows?  We have been gypsies for many years now and we're happy living wherever works takes us, including the UK.  Plenty happening in China these days so it's fun being there, and I worked there for 6 years in the 90s too so it's fascinating to see how it has changed since then.

Been a wet day here today, good for the plants at long last - hope it's been better where you are.

The Mac site does seem to have a few quirks which is why I turned off notifications ages ago in fear my inbox would drown.  Think they need to have a look at it.

Good night - hugs & cheers

Charles

Hi everyone

Just after a bit of advice really and know I can always rely on you guys!

Not sure if you will remember me but full info can be found on my profile.  Basically husband had Ivor Lewis beginning of Oct last year following three ECX, was very poorly but then beginning of this year had a further three courses of chemo just as a precaution.  Hes picked up slowly and worked a little from home.  He then started back to work (job takes him round the country but also working from home some days too and is not manual work).  But his energy level dipped and then about two weeks ago dipped dramatically so much that he says he feels the same as when he first came out hospital.  Hes tired, no appetite, when he eats its very little before hes full although no probs actually swallowing.  Oncologist examined him this week and could find nothing, blood tests ok but sending him for full body scan to make sure and we due back to see him in three weeks.  His reflux in night seems to be back and this week he has been up every night.   The medics seem to think he has just overdone it but obviously am concerned seeing him like this again.  Anyone had any similar experience please?

Hi Barcadiwoman

Of course I remember you, I’m sure everyone will.  My chemo-brain’s memory may never have recovered completely and I’m the world’s worst at keeping in touch, (my favourite saying is, If the phone doesn’t ring, it’s me), but I never forget people.

I’m sorry to hear that your husband is feeling so tired again and that the acid reflux is keeping him up every night.  It’s good that the doctors are fully investigating with an MRI scan and it’s also good news that the blood tests were clear.  I was going to suggest having the B12 checked, but obviously they will have covered that with the blood test. 

Almost anything can cause this fatigue and it’s not at all unusual to be doing really well in the first months, only to have a big setback of some kind.  I’m inclined to agree with his doctors here in that he may have been overdoing it somewhat.  It’s only been 8 months since his surgery and he had quite a difficult recovery didn’t he?  Most people never regain full fitness for up to a year and even beyond.  Some can recover enough within 6 months to return to work, but for the majority it can be much longer.  It’s such massive surgery that the body, from the inside out, is exhausted and traumatised.  It also takes a long time to recover mentally and emotionally from this, and that in itself is exhausting.  Complete lack of energy can also affect the appetite and less food further decreases energy, so it’s a vicious circle.

As for the acid reflux, if it’s the kind that is leaving blisters in his mouth and unable to talk or swallow for a couple of hours from the rawness of it, he has my fullest sympathy.  I get this very rarely now, but suffered with it for up to two years.  He should sleep in an almost upright position and there are various remedies that may help, which you might have seen posted in the group or elsewhere.  His GP could prescribe something or Zantac is quite effective for some people, as is bicarb or baking powder with lemon.  Also remegel may help, but is not particularly strong, but tastes great.  Also, he should watch what he eats before bedtime and preferably not eat for a couple of hours prior to sleeping.

I know it must be a worry, but the body scan will enable the doctors to see fully what’s going on and hopefully will reveal nothing to worry about and that he just needs to rest much more. 

Let us know how you get on and do keep in touch.

Hope you are well too?

Love

Crystal xx

Thanks Crystal.  Not sure if B12 deficency was tested for or not to be honest, its never been mentioned to us.  What are the symptoms if he was deficient in it?

Hes no better and is actually asleep as I type!  Its his birthday today and we hope to go out for a bite to eat but nothing booked as never know how he will be.  Feel quite low that we seem to be going through exactly the same as this time last year.  Had hoped this year would be better.  He had to postpone scan for a week due to work (!!!) so now have another week of sleepless nights before we find out.  Scan 4th, results 6th now.  I think he MUST be ok as hes not long had chemo but then again cant understand if it was just overwork why hes not any better now hes cut back a bit and why hes up most nights with reflux when he had been fine since op....  Lots of questions whizzing round and as usual the unknowing is the worst bit!

Have enjoyed reading up on how everyone is doing again and reading some of the new folks progresses and trials. Dont know what we would do without this site really when the chips are down!

Take care xx

Hope u get out for birthday meal our dear friends.  Card in post. Hubby still also has horrendous reflux, he thinks he should be feeling better than is at mo. Have had few drinks tonight - more than he has had for ages so hope it not make him poorly.  He enjoyed it tho.  Keep chin up both of u.  Crystal - hope u well too- have seen ur friend a few times in Costa. Not been on here for ages but has been of help during dark days. love to everyone on here xxxx

Not been on here for ages - husband had ivor-lewis last sept - a week before Bacardiwoman's husband.  Still having regular probs with reflux - should we b more worried about it than he seems to be? - he doesn't come on here either.  Still has to sleep sitting up but think this will be normal procedure for always.  Complains often of pain round scar and in sternum - does anyone else still get that nearly a year later.  Next check up is in Oct, last time were told nothing was found in any lymph nodes that were taken so hope this continues, he hopes that he will be given a scan next time too, don't know if they are given as a matter of course or not.

We are devastated at Bacardiwoman's news and it has hit husband hard.  Glad u are off to some sunshine have and hope u get pampered lots, you both deserve it so much. Nearly time for our cruise - postponed from last Aug as it clashed with chemo.  This site is always of help and many good wishes to you all - lots of love to you too Crystalxx

Hello from John in Grantham, new to the site, felt compelled to put in my twopenneth! Read your profile, looks like you are doing very well. I had my oesophagectomy in January 2008, all lymph nodes clear like your husband, that's excellent news.

Reflux? Yes, I still get that from time to time and I have thought I would be better not getting it. But talking to people at OPA meetings I realise it is probably almost inevitable and definitely nothing to worry about. I'll be taking omeprazole for life, it seems. One chap I met on Saturday is eleven years on, still takes three a day. He still sleeps at an angle, too. We just raised the head end of the bed with thick Yellow Pages, does the trick!

I still get occasional pains here and there too, 2.5 years on, around the scar and generally in and around my stomach. It feels like someone is twisting my stomach, like wringing a wet towel out. Lasts about ten seconds, several times a day. No idea what it is, but, again talking to OPA members, I now realise everyone gets this pain or that pain and they are mostly nothing serious, just a nuisance. Doesn't stop us asking at check up, though!

As to a scan, I've come round to the view that it's better not to have one. As my surgeon said, you'll know about it in plenty of time if the cancer is coming back, better to have the time free of knowing so as to maximise enjoyment of life. Discovering secondaries or a recurrence earlier will not change the outcome. It's a struggle, but I do feel that I am finally stopping thinking that every little niggle is a new tumour. Another chap at the OPA meeting on Saturday said that at five years he had finally mastered not thinking he had it back again.

We set up an OPA group in Grantham with another couple where he, Ray, had his op a year before. Shortly before our first meeting (how scary was that!) he realised his hoarseness was not from a cold, was not going away, and a scan was organised and confirmed a recurrence on a nerve affecting his vocal chords. Since then, things have been awful. But if he'd had a routine scan sooner, he and his wife, would have lost maybe six months of good quality loving and hopeful time together.

Tricky one, though. I know one of my daughters wants me to have scan every month if she could get me to! But then again scans themselves are not particularly good for you!

Enjoy your cruise! Good luck

John & Candy

Hi John

Thanks for your very kind reply and it is good to hear you are doing well.  I have told husband of your comments which has heartened him a lot.  We may try to find a local OPA group here in Doncaster, have made contacts ourselves as means of support.  Bacardi and i chat regularly on FB and they have been to visit us which we enjoyed hugely.

The pains u describe match those that hubby reports, he too lives on Lanzoprazole and Gaviscon. He experiences lots of tiredness too.  Local health peeps supplied pillow raiser which is a great help.   Bucket list started  - cruise up-coming  - and car being looked at!  He still wants a scan - more for peace of mind than anything else.

But thank u so much for your time and lots of good wishes to u both

xxx

Hi guys, after reading some of your posts it makes me feel confident and gives me hope for the future and wish everyone of you all the best.... we will all fight this bitch of a disease together...

My Brother has just been diagnosed with OC as has been told that he has a 2 inch  malignant tumor in his lower oesophagus... hes been getting all the normal symptoms such as difficulty swallowing, weight loss etc.. Im really mad because he went to the hospital last month and they told him that there was nothing wrong with him, they didnt even put a camera down his throat, instead they put one up his bum and said they couldnt find anything even though his blood tests came back that he was aneamic plus with the other symtoms they should have knew.

Any way they sent him home and said to go back to his G.P if it continues. 1 month later it still contines but getting worse, now he has pain in the middle of his back and his left leg and shoulder. My brother goes back down to his G.P crying in pain and the doctor said that he's  disgusted  the hospital didnt find out what was wrong a month ago and should never have let him out until they found the cause.

The G.P reffers my brother straight back to the hospital who then decide it would be a good idea to put a camera down his throat which then of course they find the tumor... why the hell couldnt they have done that 1 month ago???? thats 1 month longer this terrible cancer has been left to spread ????

just waiting to see what stage his cancers at and what or if they can do anything..

as anyone on here suffered back and shoulder pain with oc as im concerned the cancers spread past lypmh nodes to other organs poss stage 4 ????????

feeling really mad and upset and just needing someone to get back to me with a few wise words..

AGAIN I WISH EVERYONE ALL THE BEST AND YOU HAVE GOT MY SUPPORT %110..

KEEPSMILING XXXXX