Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Hi Andi,

Looks like your laparoscopy went well. It's good your op is soon. My husband had a wait of over 6 weeks from laparoscopy to the big op. Enjoy your picnic in this lovely weather -  a real bonus!  

keeping the faith 

Milly

So tomorrow's the day!! No food after 5.30am and no fluids after 9.30. 

Been struggling to bring up some really thick bloody mucus today that feels like it's coming from the stomach side rather than the lungs, so maybe they'll see globs of that on the Endoscopy. 

Praying all is well.

X

Thinking of you Leo xx

All the best Leo, will keep you in my thoughts

Tabnabs x

Hi Leo and Andi,

Thinking of you today Leo and hoping all is well.

I will be thinking of you tomorrow Andi and sending positive thoughts too for your operation. NHS staff are highly trained professionals and it's a big team who look after you. 
 

keeping the faith for everyone 

Milly

Thank you Milly - very nervous - can't imagine what I'll wake up to - it's definitely the unknown 

Andi xx

Best wishes Leo - thinking of you today. 

And best wishes to you Andi for tomorrow. 

You'll wake up in a very happy place and it will be a case of going with the flow and doing what you are told :-). 

Feel free to throw any questions our way and don't worry about not communicating.  I was rubbish at texting for days afterwards.  

Cheers

Bfg

Currently in recovery. Waiting for the consultant to come and speak with me. 

There was a large grey lump they struggled to get past and they've taken several biopsies. 

Will update as I know more x

So 6 biopsies taken and they're saying a 6-8 week wait for the result. 

However they seem to think it's possibly EOE or Eosinophilic Oesophagitis for the full title. Obviously won't know for sure until the biopsies come back.

If this is then it Seems to be that my body is going into overdrive against some kind of food and that large numbers of white blood cells are clogging and scarring the oesophagus. However this will now mean an onward referral to the dietitian to find which food I've apparently been severely allergic to since childbirth. 

But at least this appears to be good news, as they don't think cancer. Apparently only 1 in 3000 suffer from this so can be hard to get treatment but shall cross that bridge when I get there.

Hi Leo25Daisy,

That sounds very encouraging news! They usually seem to know when it's cancer. So as you say a bit into the unknown but if it's diet they should be able to sort out what's causing the problem and sort it out. Thanks for keeping us updated. 

keeping the faith 

Milly

Hi Leo25Daisy,

That sounds very encouraging news! They usually seem to know when it's cancer. So as you say a bit into the unknown but if it's diet they should be able to sort out what's causing the problem and sort it out. Thanks for keeping us updated. 

keeping the faith 

Milly

So they seem to think the large grey lump blocking my throat was a lovely big clump of white blood cells. And would also explain the Coughing up blood too.

Only downside is EOE increases risk of developing oesophageal cancer by 50 to 60 percent so there's a chance I'll be back here in a few years x

Hi 

A lot to take in but on a positive there is 40% 50% it won't become cancer and if it does they will be straight on it. The biggest problem with any cancer is late diagnosis. As you said cross the bridges as they appear. Easier said than done but it helps if you can do it even if it's not all the time. 
Keeping the faith 

Milly

Hi Leo. As Milly said,  they are pretty sure when it's cancer. I was told straight after the initial endoscopy with 0% chance of it not being cancer. 

And don't you just love statistics? A quick Google of increase risk of cancer was quite variable following eoe and as those of us "on the journey" know there is so much information that is out of date it is difficult to know what to trust. 

But its worth checking whether the increase in risk of 50 - 60 % means that instead of 1 in 100 its 1.5 in a 100 (as an example) and not 50 in a 100. Much was made recently of the 20% increase of cancer risk if you eat 3 rashers of bacon a day rather than 1 - or as somebody else put it, there is a 99.5% chance you won't get bowel cancer which decreases to 99.4% if you eat 3 rashers of bacon a day. 

Cheers

Bfg 

Oh Leo.

Bigclapping emojis ++

That is good news. Big release of sigh. (:

That condition is a new one on me, but in saying that I have not worked in the acute medical world for years , just as a patient/ onlooker.

One thing that has gathered steam over the last 5+ yrs is these inflammatory conditions. There are soooooo many of them coming out of the woodwork. Fascinating stuff- unless you have the displeasure of suffering from one that is (:

Interestingly they are even looking at the inflammatory response and how it is involved with cancer. Husband is on the Add Aspirin trial.

What treatment are they going to do for your big grey blob(: I wonder if it will involve erm- anti inflammatories.

Best wishes and do keep the faith and popping back now and again

cheere

Hilts

Morning Hilts! Hang on its afternoon isn't it?

Sedation always makes me more sleepy the day after.

So obviously waiting on the biopsies to confirm this one, but I hear it's only a term that's been coined in the last decade so as for how much information is out there I'm not quite sure.

Apparently though the main treatments apart from avoiding whatever the trigger food is is topical steroids and having your oesophagus dilated which is a temporary fix and then you go and have it done again! Rather like Botox treatments.