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!

Thank you. Really feel shattered now and the bed is uncomfortable when you can’t move about in it ń. Still I ate jelly an hour ago and it was great. 

Ahhh bless you! I bet you can't wait to get back to your own bed.

Suki good luck with the stent. Sorry I know nothing about them. 
Marc, that is one of the worst things straight after. You manage to get into bed , one stand on one side one on the other you’re not comfortable and you can’t move. They should stress this more in that pre hab. You need arm strength and leg strength to attempt to adjust yourself. Try and shove up on those things that stop you falling out of bed 

Hi Marc how are you doing?

How are you doing Kev?

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

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

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 

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.