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 Hilts - lovely informative reply as usual xx. Welcome (unfortunately) to Andy 84 and SueCC - can only say that the site really helped me - I am a widow and alone (have wonderful kids) so Hilts, Milly etc have been a huge help in my darkest hours - you realise others are going through/have been through the same - and to keep a sense of humour. I recently had major surgery for a hernia which was caused by oesophageal surgery - which was squashing my lungs. It was done by robot and when I went into theatre I had THEM in stitches - I said I was disappointed that a little Dalek like robot wasn't there to look after me. Was the first such op he'd done by robot - and a huge success. The NHS are WONDERFUL- welcome 

Andi xxx

Thank you that's very helpful, the palliative is a bit upsetting though even though you may live with it a good few years.

So today the CNS phoned me up, she's put things in order and said Lymophom guy will most likely let the GI guy go first. We have an appointment with the surgeon on Monday for hopefully the Laparscopy on Tuesday, As we live 3/4 hr away from the hospital we received a phone call today to go to our local hospital for bloods and things so a hands on pre mad then got home and a phone call for the other stuff.from hospital. If he has surgery I'll be at Notts.

The CNS said the surgeon will ask if he wants the oparation! so I take it if he doesn't have it it'll be chemo and palatine care. He's 79 and no or problems with eating at the minute, I take it that would change if he doesn't have the oparation. Is the palliative chemo an easy one or is no chemo easy.

Thanks so much for the info you've been very helpful Xx x

Hi, SueCC, 

I think I can safely say that chemo is no fun - no matter how it is sold.

However, all of the club have made it through to compare the delights.BUT, it is good at what it does- ie killing rogue cells. Chemo is order of the day whether you have surgery or not.

For the No- op option I think I  can't be sure- it is 8 cycles of whatever they use

for the op it is 4xFLOT ( the chemo drugs) surgery then 4 more FLOT cycles.

If he is having no trouble swallowing that is good- most of us on here that was the first symptom.

it is likely that he will have masses of scan, tests and scopes over the next couple of weeks and it is an absolutely roller coaster- but one many of us have ridden and gotten off the other side.

so keep us up to speed on your trials and tribulations (:

Hilts

Thanks hilts, he's had PET scan CT scan as that's where it was picked up, he had kidney cancer 4 years ago so has yearly scans and luckily it was seen on there, or else he would have been walking round with it none the wiser.

After reading your posts hilts Mablethorpe, Sutton on See, we live about 10 miles from them.

Im finding this group so helpful, thank you xx

Awww- I loved Maplethorpe and Sutton on Sea- unspoilt, 'unreconstructed' British at its best. Millie is also a Sutton  fan. I really really liked Louth as well what a breath of fresh air that place was- small business' 'old fashioned' proper town. Lincoln next I think for a 'pop up' weekend trip (:

We went to Maplethorpe etc about 8 weeks after husband finished his post op chemo- he even went in for a 'dip' brrrrr.

You said it was picked up on PET, so that suggests it's small as it is not giving any symptoms?
so might not even need the 'big' op, I've 'heard' - might not be correct, that small ones can be blasted off , using an endoscopy type 'thingy'. So, certainly one to ask the surgeons. I think it will be very important to ask what ALL the options are and in his ( the surgeons) experience what to go for. Have you been given the 'staging' yet?

They we're quite clear with us from the start- we did ask for a straight answer- They told us they would go for curative intent, BUT no guarantees. He is at this time'  'visible disease free' , they never say cured, just clear for now . Fingers x it stays that way!
keep asking away

Hilts

Hi Hilts and all and welcome to Sue and Andy,

Our current situation is causing us both anxiety so we are keeping everything crossed that the Colonoscopy on Tuesday doesn't show anything sinister and goes according to plan. We are both also anxious about the whole process as like everyone else Kev has to take the medication to clear his bowels but not everyone has his new plumbing and we are hoping he can cope with no food and the effects of clearing his bowels. Also I'm worried about the procedure as again his digestive system has been reduced and moved upwards. Has anyone on here had a colonoscopy after an Oesophagectomy? The good thing is we contacted his surgeon who said he could have it done. We know we have to trust the experts and just 'get it done' but naturally we are worried. We have managed to keep ourselves busy during the month long wait. In fact Hilts and Sue we went to Lincoln yesterday to the Christmas Market which was lovely.

Anyway as I said welcome to the forum Sue and Andy. As you will have seen everyone's case is unique and whilst we or our other halves  have had the same op in reality they are all slightly different and we've all had different journeys/complications and on going issues.If you've read the posts you will know what I mean. We had a longer wait than most between diagnosis and the start of treatment 14 long weeks during COVID restrictions too. However as Hilts said a few of us have managed to get away on holidays and do normal things. In fact we are due to go on a Caribbean cruise in January.  I've been amazed at the progress my husband has made and he is still taking part in the active recovery with the NHS - in fact that's who organised the trip to Lincoln. If it wasn't for the positive FIT test which is part of the National screening (which is a good) we'd be doing very nicely. This has thrown us off course and unnerved us both. 

Andi you sound brighter so I'm hoping that you are making progress and feeling a bit better. 
Hilts so pleased to hear that your husband isn't coughing! 

I think Hilts and Andi have answered the questions but please feel free to ask anything. I may not answer straight away as I'm stressed myself at the moment. 
 

keeping the faith for everyone 

Milly
 

Oh Milly - I feel for you - only another few days to wait. We must plan a celebration knees up - on this site - for next summer - when we are ALL loads better. I'm due to go away on 13 January to Tenerife with ALL my lovely family (20of us) but my consultant is saying no at the moment but has agreed to see me on 29 December to make a final assessment.  Everything crossed as two of my grandchildren are going to be there from Australia and Canada - haven't seen them for 3 years - mainly due to Covid  - will be gutted if I can't go!!! Trying to stay positive 

Keeping the faith for EVERYONE 

Andi xxxx

Thanks Andi,

I really hope that you can go to Tenerife with your family who sound wonderful especially as you've not seen two of your grandchildren for such a long time. Good the consultant is seeing you on 29th December and everything crossed that he says you can go. 
 

Are you able to do a bit more? How is your breathing now you've had the hernia op? It sounds like it was a success.

Keeping the faith still for everyone 

Milly

Hi Milly

Yes - had the hernia op on 14 November - they've hopefully put everything back where it should be!!  6/7 hour op again and although keyhole - he said I have many internal stitches. Doing a bit more but can't lift anything or drive. Said I must wait 6 weeks!!  I do feel better and can breathe again - always good!!   The consultant is a gem and I will be guided by him - I think!  Just bored and lonely!! (think I'm feeling a bit sorry for myself - not good)

Keeping the faith

Andi xx
 

Hi Andi,

That sounds positive. Yes breathing is good! Really pleased that's better as it's very debilitating and frightening. It is always best to be guided by them - they are the experts. I've had two total hip replacements first one when I was 50 and second one at 55 - followed the rules and made a really good recovery both times. Nothing compared to the op you guys have had though.

I think you are allowed to feel a bit sorry for yourself you've been through a lot. I sometimes feel sorry for myself and I've not even had the operation! These dark days don't help but hold on in there as it will soon be the shortest day and then we are back on the way to longer days again! I've been singing with the choir this weekend so that's been good. 

keeping the faith

Milly.  
 

Hi Andi,

That sounds positive. Yes breathing is good! Really pleased that's better as it's very debilitating and frightening. It is always best to be guided by them - they are the experts. I've had two total hip replacements first one when I was 50 and second one at 55 - followed the rules and made a really good recovery both times. Nothing compared to the op you guys have had though.

I think you are allowed to feel a bit sorry for yourself you've been through a lot. I sometimes feel sorry for myself and I've not even had the operation! These dark days don't help but hold on in there as it will soon be the shortest day and then we are back on the way to longer days again! I've been singing with the choir this weekend so that's been good. 

keeping the faith

Milly.