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

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

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 

Hi Andi, 

you're in safe hands, will be thinking of you 

Tabnabs x

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.

Thinking of you today Andi x

Thinking of you today Andi x

Going to have a self pity moan, so please feel free to skip!

Wednesday last week - treatment 

Friday - feeling particularly tired

Sunday - two positive lateral flow tests, Birthday plans cancelled

Monday - Birthday spent at PCR centre & bed, present from OT delayed, broken delivery van

Today - positive PCR, trip to France now cancelled.

as we can't do emojis on here, I shall describe it, a wee red face with lots of swear words! 
anyhoo, how's it going Andi and Leo?

keeping the faith but kicking his butt!

Tabnabs

Oh dear Tabnabs - you are not having a good time - hope things improve for you very soon xx

i am off to hospital in a couple of hours - ready for surgery tomorrow. Had a lovely soak in the bath - last for a while. Pretty scared but all your positive comments have really helped - will report when I can 

Andi xx

Oh no!!! Tabnabs that's awful, I'm so sorry!!! 

How are you feeling physically? Do you think you caught it while at treatment? 

Are you able to rebook France for a future date or is that not really a possibility?

Everything's okay over here. Still no movement on being able to swallow anything solid so got a telephone appointment with the Advanced nurse practitioner this afternoon to see if they can prescribe any high cal shakes or something similar so I don't Lose more weight while waiting for the biopsy results to come back. 

Also got Work moaning cos my seizures have been bad so I'm off on sick leave, but what can you do? Noticed a job on a band higher than mine has come up in my old department so I might just go for it. I miss working on Outpatients and actually having patient contact x

We'll be thinking of you Andi. You've got this!!! X

Oh no Tabnabs - not surprised you feel like you do (angry face to support you! ) Hope you don't feel too unwell and you are soon Covid Free - wish it would just do one! Hope you can re book your trip - most companies seem flexible re COVID. 

sending healing hugs and a big boot to kick Covid into touch!

keeping the faith

Milly
 

Hi Andi,

I had it in my head that your op was on Monday - so I've been thinking of you. Honestly the NHS staff are brilliant - I've had two hip replacements (which I know isn't the same) and I was a bit anxious. They will look after you. As I say the good thing is it's a whole professional team specialising in this area. 

keeping the faith

Milly

Hi Tabnabs,

It's not been your lucky week! My Dad had covid and pneumonia in February whilst in the middle of a chemotherapy cycle- he felt really weak for a couple of weeks but slowly improved -plenty of liquids is what the hospital kept saying and slowly but surely he made a good recovery.  Good luck and stay strong. 

Lee 

Hi Leo25Daisy,

Well I'm a shocked if work are giving you hassle, they should not be doing that at all! Good on you for thinking of moving but you shouldn't be penalised for being unwell. 
 

Regarding diet my husband was prescribed the compact fortisips which suited him better as it was a smaller amount. Milk is a good option and Sally on this chat suggested condensed soup as it contains more calories. Hopefully the Advanced Nurse Practitioner has helped.

Keeping the faith

Milly

Well the ANP said she was very surprised that Endoscopy took biopsies and did nothing more on on Sunday so has spoken with the GP. They've advised a full barrage of blood tests to be undertaken with a review with the GP once they come back. Earliest I can get a blood test in the community is on Monday, so will have to book to see the GP after that.

Don't you just love chasing around a diagnosis and trying to find it? I almost feel like if that's going to be works attitude then I may as well just go on long term sick leave. I've applied for two other roles one in my old department and one on reception and I've worked with both their team leaders before so hopefully one of them will come through.

With stress being a seizure trigger it's really important for me to be in a role where I feel supported, so at the moment gynaecology isn't really doing it for me. 

Guess I'll see what happens when I get in with GP. X

Yeah, not too bothered about France tbh, as you say easily rebooked. Physically feel as rough as guts, but taking full advantage of feet up with not feeling guilty.

it'll be interesting to hear what Nurse specialist will suggest, go for the other job too, they don't sound terribly sympathetic where you are! 
Andi, I'm sure like everyone else on here wishes you all the very best for tomorrow, I hope your bath was totally lush, plenty of bubbles, candles, rose petals the lot! Cos' you're worth it ;)

Tabnabs