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 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 Hilts 

Firstly, how weird is this? We went to IOW last July/August for two weeks. A week in Shanklin then a week in Ventnor! Love, love, love it like you. Went as a child to Ventnor and then took our lads there a couple of times. Sutty and IOW lol.

Re breathing thanks for your report. Because of the complications it's hard to know which op has affected what and the recovery from each one! He had an appointment with the respiratory surgeon this afternoon so just wanted to sound you guys out first. Upshot is his left lung still hasn't expanded completely but the surgeon said after 2-3 months this should be back to normal. Also hystollogy results showed Pleural Empeyma as a result of trauma after second op. This resulted in the pockets of fluid with infection and the thickening of the chest cavity hence the latest emergency operation - no wonder he couldn't breathe. That's what he and I found difficult as his lungs were perfectly fine before and after the Oesophagectomy. He ran into hospital on the day of the op and came out in a wheelchair 5 weeks later. He could barely talk without getting short of breath. When we went to respiratory the previous two times he was in a wheelchair- this time he walked in. 
They have sorted him and more good news was that no cancer cells were found in the fluids that they tested. He is discharged from that hospital now and sees Oncologist next Thursday- so we'll see what they say. Still under upper GI team as you will know.

It's been a very bumpy ride on an already bumpy road!

Your bloke is doing so well but even so as you say it's not straightforward. Hope his procedure goes well and it helps with the cough.

Thanks for everyone's support - it's making a huge difference. 
 

Keeping the faith 

Milly

I live on the Island, moved back in November after an absence of 25 years, can't understand why I ever moved! 
Awesome news re your Dad, Leechap So pleased for you. Also good news for your other half too Milly. 
had a call from hospital this afternoon to assure me it's still going ahead for tomorrow, we'll see! 
 
stay cool all

Very good news Milly, I guess being discharged is a very good feeling

Lee

Hi Lee, That’s good to hear about your dad. Chemo may be tough but it is doing it’s job! Interesting re the Covid scarring - a nasty virus indeed - thats why we are being careful as we can but not paranoid as the numbers here are rising exponentially. I agree we seem to have formed a band of warriors fighting against this disease. You are definitely part of it all and although no one wants to be in this club - I’m glad there is one.
Keeping the faith

Milly

Ps yes good to be discharged from second hospital and back to original one now! 

Hi Tabnabs,

Wow what a beautiful place to live! We absolutely love the island. Thinking of you tomorrow and hoping all goes to plan.

Keeping the faith

Milly

Hi Tabnabs, 

Good luck for tomorrow,  will be thinking of you. 

Lee 

Yaaaayyy- everyone

I knew it - I reckon we all know each other LOL. The amount of 'coincidences' among us are bonkers. My husband reckons that chose 7 people you know and there is a high probability that you will know or have a link with all the people in the world!!!! - me, being a very non maths person reckons that's hogwash, but he- being the scientist/ maths wizz reckons it is perfectly possible..... I digress....again.Maybe that's why we are having a pingdemic ?

Leechaps. This apple does not let my do emojis on this board, or I would put a load of claps and hearts in. That is blooming fantastic news. Get out there !  You're Dad is now the 3rd stage 4  person just on this board to have the blighter walloped into place.

Yep Millie, it really is little tiny daily steps and before you know it.......back

As y'all probably know my husband bought himself a nifty new car last week. My neighbour has just asked him is he becoming Walter White !!!!! Lol

take care & keep the faith - we will all get there. X

Hilts

Thanks Hilts...

Thanks Hilts...

Hi y'all, 

Just reporting in. Just picked husband up from hospital.

He was having a 'ballon dilation of his 'join'. Scar tissue that has healed a little to well (:

He had a nice time on the 'sedation' and is now across from me stuffing tea and toast.

Went really well. The original surgeon did this, so knows what his 'interior' looked like. Said it needed stretching and used a a balloon to do it- they even sent him home with pictures of the procedure !

even better of course is that he had a look around down there and no biopsies, as nothing dodgy seen (:

yay

Keeping the faith folks

Hilts

Very good news Hilts...nothing 'dodgy', I like your style!

Lee

Really pleased that you haven't got a dodgy husband Hilts

back home now, stiff, sore and wobbly and full of wind (no change there!) Surgeon said op went really well, onwards and upwards for the big one now!

keeping the faith

Hilts - Tea and toast?  No beer?

It's great to have the confirmation that nothing is going on down there - I still find it odd that there is a hands off approach to post-op follow-ups.

Hope all went well with Tabnabs, and great to hear about your dad Leechaps and your hubby, Milly.  :-)

bfg

Very good news Tabnabs, glad it went well - onwards and upwards. 

Lee

LOL MILLIE, 

NO, no beer LAST night. Too 'chilled' with all the fentanyl & midazolam.. Keith Richards would be proud (:

As for the hands off approach Millie, I got the impression when I spoke with MDT nurses when I was having a 'moment' when he was discharged from Oncology, that with this type of cancer, there are no clues apart from symptoms, they told me they only scan and scope if there is new symptoms- I was a bit miffed by this to start with, why can't they scan and scope him monthly!!!but now (on reflection) I get why. No PET SCANning, as it has to be a certain size for PET to pick it up and that size would also be big enough to cause symptoms. No scoping as again, if no symptoms then to small to find it. I wanted them to find the ONE cell under his little toe nail that was thinking of setting up home and murder it, but sadly doesn't work like that.

He got the scope because of a persistent cough- which we know was caused by scar tissue, but also they didn't find anything else dodgy down there, but again the old favourite VISABLE disease free (:

Him and the kids have gone swimming today in the river, as all the council pools still have their 'restrictions' going so the whole district is in the Thames- council can't stop us having fun.LOL

Yes, tabnabs, he 'dared' mentioned a 'bit of wind' yesterday- let's just say the trouble didn't last long!!
keeping the faith

Hilts

Hi all,

bfg I just wondered if my answer was correct?

Hilts - pleased your hubby's procedure went well and nothing dodgy was found. Bet you're off out in your sports car this weekend so enjoy! 
Tabnabs - pleased your procedure went ahead and the surgeon was happy - always a good sign!

Keeping the faith

Milly

Hi Milly

You were spot on. :-)  they have a fantastic permanent outdoor conservatory now with removable side panels during summer.  Do let us know when you and hubby are down. 

Tabnabs - it's always the trouble when I take so long to reply, the world moves on and I'm glad that your procedure went well. The subject of wind and chemo is funnily documented over the web as something that isn't really mentioned as a side effect. Peeling wallpaper,  beezlebum and being unable to blame the dog for that one.... are some of the comments.

 Cheers all

Bfg

Bfg, have to say that isn't so bad this time round as it was with the first lot of chemo, could have inflated a small airship then!
Hilts, that's really interesting about PET scans, always wondered

Thanks everyone for good wishes

keeping the faith

Hi all

Yes , Tabnabs- I knew absolutely zero about PET scan before this, but my chemist of a husband felt he had to describe in fine detail the whole thing(:

They inject you with radioactive glucose, let is find its way around the body for a bit.

Cancer cells LOVE sugar, so they really love to absorb masses of the glowing glucose (:, shove said person in scanner and watch the little ba* rds glow., BUT , and there is always one, even though microscopic cells will soak it up, they are too small to be seen on imaging. So any 'tumours' have to be over a certain size. I might be talking rot, but that is how I am understanding it. Amazing bit of kit really(:

Yes, Millie we've been out all day, not in the sports car (:, but on the river - not in it for a change. Sailing- soundS glam - er no, just one of those inflatable boats that you can buy from a major sports shop beginning with D and just drifted down river, once had enough, deflated it and go the bus home (:

Now just poleaxed on the sofa (:

keeping the faith

hilts