Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Hi all,

I'm glad I posted as good to hear everyone's update. I agree Hilts we have formed a bond and it's great because we all feel we can share our ups and downs and even have a laugh along the way! A sudden thought of The Banana splits and the Double Deckers came to mind about us all in this 'Gang' lol.
 

Doug so good to know you're having a great time in Scotland! Be good to hear about your treatments which sound much nicer than chemo! 

Jae so typical that your mum got 'pinged' at that moment. It's hard with Covid and like BFG said just got to sit tight. It's hard being a patients 'other half' but damage limitation is our take on it! 

We aren't able to do a lot at the moment anyway but are hoping to at least go to our local National Trust and just sit somewhere different. Early days for my husband as he's 10 weeks post first op, 9 weeks post second op and 2 weeks post third op! 

Hilts hope all goes well with 'the stretch'. 

Tabnabs hope all goes well on Monday. 

Bfg enjoy your restaurant outing! Yes update needed - maybe a glass of wine if 4 pints is too much.

Cheers! 
Keeping the faith

Milly

Hi Bfg and all,

Hope you had a good meal and enjoyed your evening.

I recall you saying that you had some breathlessness after your op? Not sure if others experienced this too?

As you know my husband had a complicated pleural effusion which required additional surgery. He is making progress but has noticed when either sitting on the loo or bending forward  his breathing changes to a more shallow breathing..  Any advice on whether this is typical of Oesophagectomy and if it improves? Thanks and hope everyone is trucking along. Hope your procedure was OK Tabnabs.

Keeping the faith

Milly
 

Hi Milly

Having gone through the journey - with the excepton of your hubby who decided the left tunnel looked far more interesting - I recognise the symptoms.

Post-the original-op we were encouraged to stand up and walk about as this was far better for the lungs than lying down (the worst) and sitting (not so bad but not as good as standing up).

I imagine that post the other ops, the lungs will still be recovering big time and the effect of sitting down, and leaning forward basically pushes all of the internal organs and internal fat upwards and restricts the lung function - hence the more shallow breathing. 

It will improve. You should have some breathng exercises to help work the lungs, and when ready if not already, then walking is ideal - with small incremental steps each day.

As for the food - what can I say.  The owners and the people working there are more like family - we do what we usually do and share starters and desserts, so a mix of fresh grilled sardines, dressed crab, moules, skate wing and fish and chips - finished off with tarte tatin and a chocolate bomb with pear and ginger and a bucket of chocolat sauce.  :-)

Keeping the fffaith

bfg

Just a quick update, got the ferry across to the mainland only to be told that the anaesthetist had been covid pinged and therefore op was cancelled Rescheduled for Wednesday now, in meantime I had a CT scan only to have an allergic reaction to the dye, looked like I'd gone ten rounds with Mike Tyson! Then had the most appalling coughing fit which lasted over 20 minutes. Then to add insult to injury the cannula site bled all over my only set of clothes! What a day , think I might stay in bed today just in case! 
Bfg your dinner sounds amazing, good for you.

trying very hard to keep the faith! 
 

Hi Bfg,

Thank you so much for your reply. Yes he was up and walking the ward after his first op, off oxygen and hitting the top of his spirometer before he became critically ill! After all that's happened the Oesophagectomy seems to have been in the background! Your explanation makes complete sense. He is doing the breathing and other exercises and yesterday hit the 4000 on the spirometer fior the first time since it all 'kicked off'. We have been on one short walk and once this heat (not complaining) has subsided we will go on a steady increase fingers crossed. 
 

Your meal sounds amazing - I don't suppose you are allowed to say where it was on here? So pleased for you. It must have been so special. Here's to more good times!

Keeping the faith. 
 

Milly and Kev says thanks too! 

Hi Milly - that's great.  I remember I could only walk around the house and got extremely breathless when first out of hospital - but 9 days later walked up and down the road, and then even walked from the car to meet my surgeon for the post-op 2 week checkup.  Small steps.

All I can say is that if you search for the name of the registry office in a place that you can append to the word paddling, then you will discover a tavern that is not really a tavern.

Tabnabs - I'm surprised the ferry didn't sink!  Was the allergic reation a one-off?  You could have waited until post-op at the end of August for this, then you would have been blooded, looked like you'd gone through 10 rounds with Tyson and had the scars to prove it!

bfg

Hi Tabnabs,

Not sure but are you on IOW? This pingdemic is causing havoc but so are the cases! Best not to dwell on it though. Sorry to hear about your trials and tribulations. Brings  a new meaning to 'I don't like Mondays!' Hope you have a better day today and all goes well tomorrow. Keep going and yes keep the faith!

still keeping the faith

Milly

Hi Bfg,

You sound like a 'quizzed'. I think I've got it and wish we had kids as we would definitely have it out now in our garden. We have a Guildhall in a city near us. What a lovely location!

keeping the faith as always

Milly

Hi y'all

Millie- shortness of breath/ shallow breathing . Very much so. Not now though 7 months on . I think he used the breather excersises given from the hospital. I remember that he was done on 16 th December and was still 'puffing' on short walks ( up the street and back) mid feb and he was a straightforward oesophagectomy  if that makes sense- nothing simple about any of it (:

I think if I remember rightly he improved massively towards Easter, manage a walk around Avebury henge, although it was absolutely freezing and his neuro oxiplat fingers were giving him more trouble. Then by end of May he was doing that water obstacle course thingy. It really is a very gradual thing, he's certainly not as fit as he was pre op, but hey, he's here (:.

Oh wow BFG- what a Gorgeous  sounding bit of grub. I bet it was the best bit of grub you'd ever tasted (: cheers to you and may you have many many many more.

Too hot (86 deg here now) need to lie in a dark corner under a fan! honestly, I lived in Egypt!!!-( 101 deg there now) but of course life there is totally geared up for it and you really do get used to it and alter your routines accordingly, not many people would go and do a weekly shop at say 11pm here, but there packed. Everything is quiet all day and comes alive after about 7 pm.

who is on IOW? We went there on hols last year.  Love love love it.

As for the 'pingdemic' oh Lordy . Sadly my phone is a 'burner' and doesn't do any of this. When I go anywhere I give them my landline- so if I'm there has been an outbreak where ever I've been I get a call

The big problem with AI and algorithms is that it is not very clever at all. My mate went to a bakery last week, about 7 am, as it opened, no one else in the shop, left after 10 mins. Got a 'ping ' the next day telling her to isolate!!! as someone had used the bakery who had later tested positive- what a joke- that person could have gone in there at 5pm and even if this person had been in the shop the same time as her, chances of catching it there probably about 0. These apps comb all your contacts, so if I had this type of tech then I'll probably get one off Elvis , in  London bus on Mars!

Anyway have a good day all

Always keeping the faith. 

Hilts

Hi folks, just wanted to share some good news we've just had. My Dad had usual weekly blood tests at 08:30 followed by 11:15 meeting with oncologist (didn't get seen until 13:30 and as you'll all know, waiting to see the oncologist following a ct scan is one of the scariest waits you'll have), but the oncologist said there has been a reduction in both the local and distant lymph nodes and also a reduction it the actual tumour!!! As you can imagine we were over the moon as being a stage 4 patient who had increased volume in the lymph nodes after the last scan (after the first round of chemotherapy stopped), we was not expecting good news. Also my Dad started to wee lots o blood over the last 10 days and on our minds (although no one wanted to admit it) we were wondering if it had spread. The oncologist said he's sure it's a urine infection due to chemotherapy weakening the immune system. 

Also the oncologist said that the scan showed scaring on my Dad's lung due to covid (back in feb) and this is why my Dad is getting breathless after a short bit of walking but he did say it should improve over time.

So all in all, a very good (slightly surprising) day and it'll be celebrated tonight with a few beers, vinos and food!

It's funny but although I haven't met anyone on this group,  I had a feeling of wanting to share our news with you all...

Keeping the faith (now I feel like I'm really apart of he group!)

Lee

Hi folks, just wanted to share some good news we've just had. My Dad had usual weekly blood tests at 08:30 followed by 11:15 meeting with oncologist (didn't get seen until 13:30 and as you'll all know, waiting to see the oncologist following a ct scan is one of the scariest waits you'll have), but the oncologist said there has been a reduction in both the local and distant lymph nodes and also a reduction it the actual tumour!!! As you can imagine we were over the moon as being a stage 4 patient who had increased volume in the lymph nodes after the last scan (after the first round of chemotherapy stopped), we was not expecting good news. Also my Dad started to wee lots o blood over the last 10 days and on our minds (although no one wanted to admit it) we were wondering if it had spread. The oncologist said he's sure it's a urine infection due to chemotherapy weakening the immune system. 

Also the oncologist said that the scan showed scaring on my Dad's lung due to covid (back in feb) and this is why my Dad is getting breathless after a short bit of walking but he did say it should improve over time.

So all in all, a very good (slightly surprising) day and it'll be celebrated tonight with a few beers, vinos and food!

It's funny but although I haven't met anyone on this group,  I had a feeling of wanting to share our news with you all...

Keeping the faith (now I feel like I'm really apart of he group!)

Lee