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!

Hi Karen. It will be 4 weeks since my op tomorrow and I’m ok. I have been sleeping a lot better in the last few days as the pain is wearing off. Once the initial numbness wears off it becomes quite uncomfortable and i needed lots of pain killers. I am down to just two lots a day. Eating is a bit better since I’m on a soft diet. It’s just a case of getting used to the frequency of eating. I have a very croaky voice since the op as my vocal cords may have been bruised by one of the tubes I had in. I started driving yesterday and it was great to have the freedom again. I hope your son is doing okay. Take care Marc

Hi Marc. Great, sounds like you're making good progress. Good you can sleep well now.

Did you have a feeding tube in for a week or so after the op? What painkillers do they give you?

Dean has can this Wednesday & sees surgeon on 8th. His op may be1st August but may be put back as he's currently got another infection. He's had 7 infections in the feeding tube they talked him into having in early Feb just incase he was unable to get anything down - luckily thats not happened but the tube has been a right nuisance. 7 lots of antibiotics. He asked them to take it out and was told no because you need it for after the op they said.

I know it'll all be sorted and he'll be ok but it's just a lot of stress & worry isn't it.

Anyway you keep on feeling better & better!

Hi. I didn’t have a feeding tube. It seems to vary from Hospital to hospital. Hopefully they will take it out asap. Good luck. 

Hello Marc 

Pleased to hear you are making good progress post op. I welled up when read your post. Rooting for you.

Best wishes RB

Hi Karren 

I can only imagine how worried you are about Dean. We feel just the same as when they were small dont we as Mums?  

Is it a gastronomy tube ? 

So many infections sound a real downer physically and emotionally.

Here if you need chats 

Hoping things go well for Dean

Look after yourself too

Kind wishes

RB

Thats good then. He's going to ask surgeon next Tuesday. You keep going onwards & upwards!

Hi. Its a jejunal tube. He's not had to even use it - definitely happy about that obviously but 7 infections since 10th Feb. I don't think surgeon will agree to removing it till after hes eating after the op. He asked her about taking it out after infection number 4 and it was a 'No'. I don't know how he stays so chipper most of the time. I suppose its a case of gritting teeth and carrying on just wanting to get through it.

I do worry yes - all the time. Its great when theres good news like ability to swallow proper food. He's maintained his weight the last couple of months, still 110kg so not exactly skinny!

Anyway, you take care of yourself & hubby.x

Is it being flushed regularly?

Better to have and not need I guess

Good that your son is staying upbeat

Hope all goes well when time comes

Best wishes 

RB

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 

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.    

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