Hi I am having the same procedure on Wednesday I have found it doesn't matter what anybody says the fear is constantly with you ,I am the same ,I don't switch off at night neither.I think my fear is to find out what stage i am at.Hope you find something to help you .

Its all constant fear. I know its not happening to me, but my son, but its constant fear as to what theyre going to say. My son will be told the stage soon as well but hasn't got appointment through yet. Keep googling what I know so far about his tumour size and no spread etc to try and predict - it's driving me mad!

Thanks for good wishes.

The swab came back as fungal this time so he's got antifungal cream now! X

Hiya Karren

As our loved ones are more susceptible to infections  maybe this is why Dean keeps catching them...it sucks I know.

Are you keeping okay yourself 

I'm not too bad thanks. Its up & down as you know. I'm a teacher so I'll have the 6 weeks off and be around for Dean while he recovers from op. Hope you are looking after yourself.x

Hi All. I hope everyone is doing ok and enjoying the good weather. Dean had scan results & talk with surgeon today. Very good response to chemo, hardly noticeable on scan. Op is on 1st August.

Hi Karren 

That is good news. You must feel pleased at the results 

Ill keep everything crossed for the 1st.

Its nice to hear positive news.

Sending best wishes to you all especially Dean

RB

That’s good news. Now get in those walks and eat those calories before the operation. All the best to you and Dean

Thanks so much. Yes, a relief. Hope alls good with you & hubby

haha. Thanks Marc. How's your recovery going?

I've been trying to get him moving for a while, he's also waiting for a knee replacement as he tore it to shreds a few years ago. He gets sciatic pain in his hip in the opposite leg due to compensating for the bad knee!

He's definitely eating the calories though and doing as much moving about as he can. Did you have one of those incentive spirometers before your op to strengthen lungs?  They gave Dean one yesterday. 

Also, I have accidentally come across you in a group on FB - not stalking you honestly.

I had a bottle which I blew into and made bubbles that helped to strengthen my lungs. I am sleeping reasonably well now but still get tired quickly. A lot of the pain is gone in my chest and back now. Eating is a problem as I get tummy ache every time afterwards and therefore don’t enjoy it. Also my vocal cords must have been damaged as my voice is really high and croaky. I am seeing the oncologist tomorrow and she will no doubt tell me that I am starting chemo again In two weeks and *** me up completely for a few weeks. Still I’m still here and that’s something. 

Thanks for reply Marc. Sounds good except for tummy aches and voice issue. Did you raise the voice issue with oncologist? Hoping its a temporary thing. Incidentally about 10 months before Deans diagnosis, my husband had thyroid cancer and the op caused changes in his voice and definitely his eating habits. he loved a point of beer...or 6! but now has no taste for it hardly, same with indian curries, he used to have vindaloo but can barely tolerate a bhuna these days.    

Thanks for reply Marc. Sounds good except for tummy aches and voice issue. Did you raise the voice issue with oncologist? Hoping its a temporary thing. Incidentally about 10 months before Deans diagnosis, my husband had thyroid cancer and the op caused changes in his voice and definitely his eating habits. he loved a point of beer...or 6! but now has no taste for it hardly, same with indian curries, he used to have vindaloo but can barely tolerate a bhuna these days.    

Hi Karen. Just wondering how Dean is getting along now. I’m half way through my second lot of chemo sessions and not too bad this time so far. Eating is still not great as I need to have my throat dilated a bit to make it slightly easier to swallow. I don’t really enjoy food any more but the weight loss has made me so much more mobile and I can’t walk for miles with no problem anymore. I haven’t taken pain killers for weeks now so that’s good . I can also sleep fine on my side with just two plllows so that’s good is great. I have had to buy quite a few new clothes as I am three stone and a bit lighter now. I also hope that you are doing well as I have seen how difficult it has been for my wife with all that is going on and I know it effects our family so much.regards Marc

Hi Marc, good to hear from you. So they made your join a bit tight, or maybe it healed a bit tight? I have heard of many who have had ivor lewis having to have dilation. So weight wise are you happy you lost weight or is it a bit too much loss? Great you're not needing the pain killers. Appetite can go at first I heard but can gradually come back. Are you saying you can or can't walk miles anymore? Sounds like you're not doing bad as you are only a few weeks ahead of Dean.

So Dean had the op on Friday 1st August, 7 hrs so not too bad. left him alone on the Saturday but he wanted us there on the Sunday - he could barely talk as he was so breathless - I was bloody worried! I raised it with a medic (obviously Dean was telling them as well) and they said they weren't concerned. I raised it a couple more times over the next 6 days and then on day 7 when myself & his wife were there he took a turn for the worse and it was action stations - very scary. Emergency scan, back into ICU on oxygen & IV antibiotics, as he had been moved to the normal ward 2 days previously. 

They thought it was a tear in the join (long story) they took him back into surgery next day - general anaesthetic for endoscopy procedure where they fitted a little sponge gadget on the join, even though they could not find any tear, they put it there just in case it was too small to see. Then, after anaesthetic they couldn't wake him up and his breathing and SATS were all 'off'. They called us to say they were putting him on a ventilator so we were beside ourselves with worry. They said to call back in 2 hours to find out what's happening! The mad thing is that about 1 hr into the 2hr wait, Dean messaged me like nothing happened :) He knew nothing about his possible brush with being ventilated - no one had mentioned it to him. 

It turned out there was no tear, it was pneumonia and a collapsed lung. Within 4 days of all that he felt really good. He came out 8 days ago and is eating alright, says he's not sure if he feels hungry or not but is eating what he can as he's lost about 4 stone since diagnosis. Luckily he could afford to lose it.

He has appointment 2nd September to find out pathology.....why do they keep you waiting to find this out I wonder.

Yes it's hard for those that love you but we would swap places so you didn't have to go through it. 

Regards Karen

Hi Boxbrain0,

A big thank you for starting this thread. My husband was diagnosed in mid February and I have been following this thread over the months. 
You are a few weeks ahead of him and it has helped me prepare him for what’s ahead 

He had his operation on 31st August, so almost four weeks ago. 
When he came home, all his wounds were infected, even chest drain sites . Some level of pain has been a constant companion.

His wounds are now clean and healing. He is able to reduce his pain meds. 

Just a couple of questions:

He seems to sleep most of the day, were you the same 

Is the low fibre diet a temporary measure? 

It’s good to hear you are now pain free and hopeful that it is mentioned somewhere on this thread of someone jogging 6 weeks after surgery. ( Husband is a runner 

Hi yes I can walk for miles and so much fitter than before the op. Just need muscle to build up but otherwise ok apart from having a voice that is a cross between Brian Adams and Kermit. 

Thats great - the fitness, not the voice! Though Brian Adams is husky so thats not bad....Kermit, not so good! Did you say they said your voice will go back to normal?  

Hello all. My wife had her CT scan on Tuesday, but the report didn’t make it to submission in time for today’s review meeting. We will have another seven days to wait for the diagnosis and plan.

She’s doing ok, but can only have liquids as any pieces of food won’t go past.

The initial shock hit me the hardest, but after a week at work, I’m more settled and calmer now.

I’ve been very impressed with the NHS. They are an amazing team and although we have another week to wait, we understand that they are doing their very best with the resources they have.

I hope everyone has a nice weekend, and you all take care x

Alex

I really hope everything works out okay for your wife Alex - stay strong x

Hi Alex, yes the waiting isn't good but somehow the days go by. I'm glad you're feeling more settled- what else can you do?! I did the wrong thing when my son was diagnosed - I barely got out of bed for 4 days and ate 1 banana and a kitkat in that time. I couldn't stand the not knowing what it all meant and what might happen. We as a family got used to the tests, the waiting for results etc. I always felt awful that my son couldn't even enjoy food anymore. Although, even when they told us the tumour was blocking his oesophagus with just a tiny gap for liquids (which often also came back up as well) there were times when he did manage mash with primula cheese spread mixed in, and even potato and leek soup somehow. At the time it can feel like that's how they will be for good, but there is definitely light at the end of the tunnel (we are not even at the end of the tunnel yet as he has the other 4 FLOT to go) he is 4 weeks after the op now and recovering, eating more or less normally. So good luck for scan results.x