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

I seem to be saying this an awful lot recently 

Welcome to our 'oesophageal cancer club' .All of us on her being fellow travellers on that crazy rollercoaster ride that is diagnosis. We have got really good at finding each other.

Lee- your Dad is another 'Young'un'.  He sounds like he is getting really good treatment. There are a few stage fours about on here. One that is 7 yrs down the road with his palliative treatment. They never operate unless you are as fit as Mr Universe LOL. 

Great stuff that your Dad is on an immunotherapy trial. Brill.  My husband is now on the Aspirin trial. The old placebo thing drives us mad! Like Russian roulette. With clinical trials, I don't think any of the medics are ever told who is on what med or placebo. The only people that would be aware are the people who are in charge of the trial and that will be a closely guarded 'need to know' basis. If word got out on any research trial, that would completely invalidate the results. Is it the proverbial guinea pig- yes, but participants  go through a pretty thorough consent process and are fully aware of what they are being asked to do.

I think everyone on here saw a massive improvement in swallow after a few blasts of chemo.  Are they going to blast your dad some more?
 

Now the emotional side of it ,OMG where on earth do you start with that one. Have a look through my old posts and on this trail. All I can say is dramatic and intense.

Millie - glad to make you smile, d'ya know, if you can't laugh what can you do eh!
get slashing them weeds, you'll be known locally as ' The slasher'.

keep going folks

Hilts

Hi Hilts - thanks for your reply.

At the moment the oncologist is saying we should just stay on the immunotherapy/placebo and see what happens through regular blood tests and scans. He did say that a second course of chemotherapy would be an option if things got worse. 

Lee

Hi lee

Sounds  like a cracking plan. He seems to be very well looked after.

Sometimes I think it is worse for the onlookers ( family/ friends). My husband , aged 56, diagnosed out of the blue late July last year.has got through it in very 'brave' mode. Like everyone on here, just plodding on as best we can.

SomethingI've told myself since the start is 'it's cancer, a treatable and manageable condition in a lot of cases, it could have been a whole lot worse, diagnosed with some hideous condition that is always fatal and has no treatment whatsoever ever' , the good old 'bus' could have run him over etc.

I look at him and think wtf just happened, it almost doesn't even now seem real.

Anyhows , keep us updated

best wishes

hilts

Thanks Hilts, we just keep trying to educate ourselves as much as possible and remain open to all options.  We'll try every option and remain positive.  We say 'we have cancer,  but cancer doesn't have us'. 

It's very comforting having contact with people in similar situations. 

Good luck. 

Lee 

Hi Lee,

It sounds like all options are being given to your dad. My husband was 62 when diagnosed and even now it still seems unbelievable. Everyone is unique but it's good to be in contact with others who are going through this difficult situation. I have used the Macmillan nurses support line which I found useful. Also there should be support via the NHS. 

Hilts thanks - I'm pretty anxious right now. We've been on lots of walks last week and stomped on a few weeds!

Milly

Hi

Millie, anxiety = compulsory I think, when we were at the same point, I looked at my 'head' and compared it to a washing machine, full of spaghetti on a spin cycle. Couldn't pull a 'proper' thought together......and 'twitchy' like sitting down, something came in my head , back up again . and forgetful!!! All the strands of thought came back to op and of course how it would be a complete 'disaster' - of course , nothing of the sort happened.....

i knew why I was like it, but hated the way it made me feel. I am 'like that' anyway. Now of course the 'head' is wondering if it will come back!!! Last night I dreamt, that I brushed my hair and it all came out on the brush- now I wonder where that came from ! LOL. 
Getting that thought out on here is amazing as by doing it, I have 'processed' the thought and 'filed it'

Millie- get out there for a 'stroppy' fast walk- burns the nervous energy. Really helpful

D'ya know, I think through all of this what has kept me (ergo the rest of my house)going is this board, where you can just spill .  Keeping a sense of humour has been really really helpful.Me and him have sat here some nights, looking at old clips from films , current affairs, news etc with tears of laughter rolling at the most inappropriate things. Daisy 71 posted a few months ago about things NOT to say to cancer patients- a real laugh out loud job. Smiling now thinking of it.

Lee- I think if this 'thing' has taught us anything, it is to enjoy right now. The small things, like sitting out with a coffee talking about utter cr**. Doing thing on the spur of the moment, like going to London for the weekend in September. We just said c'mmon , let's just go- we had a fab time, and the 'upshot' of Covid being no tourist . Dead quiet. We then though 'can we afford' it, quickly gone , with 'sod It' We also just one morning decided to go to Bournemouth. Why? No idea, just did it.

i suppose we have kept busy by living. No other way to do it in my opinion.

Hilts

Hi Hilts,

Thank you and yes dreams are strange. The ironic thing for us is since losing my mum when I was twenty four, our third son when I was thirty and mum in law when I was 31 we have had the attitude of 'do what you can while you can'. Hence the reason why my husband took early retirement and I finished my permanent job and started doing supply work. My biggest fear was knowing life is fragile and that if we didn't take the chance it may be gone. We have managed to tick some things off our 'bucket list' and your outcome gives me hope that we will again get on a train, drive, go on adventures again. We should have done a road trip around Europe in 2020 but we all know what happened there. A road trip around anywhere sounds wonderful. Just got to get through this stage and hope all goes to plan. Family and friends are so important and making memories whatever they are big and small are what leaves our legacy. Live, laugh and love. Hanging on in there.

Keeping the faith.

Milly

Hi sorry to jump in but my Dad has terminal stage 4 esophageal cancer that spread to his lungs, had 6 rounds of chemo (only option due to 2 ups & radiotherapy for mouth cancer 8 years ago) It shocked Doctors by blasting the 6cm tumour & large area on lungs into just bits but only a few weeks later it's growing back a lot faster than hoped..has this happened to anyone else? I think 8 is the max chemo he can get so there is 2 left? No word of them doing it though, next scan not till July? I'm out of my mind with worry & confused, I wish I could go to the appointments!! He is 66.

Hi Kazzakp,

I'm very sorry to hear about your dad. It is a very difficult situation anytime but not being able to go to appointments makes it harder. I am not medically trained so I am unable to give advice but I have contacted Macmillan nurses and they have been helpful. I have been able to go to a couple of appointments with my husband so maybe you could ask if no one is going with him?

I hope this helps a bit.

Milly

Hi Hilts, yes you are correct - we are fortunate to be living in Spain and today we went for a walk on the beach and a coffee. We have also just booked golf for Tuesday - my Dad will try to walk the course as he is still fit and strong. 

It's amazing that only when a huge tragedy occurs do we realise how meaningless many things are that we all put importance to...and really we shouldn't waste a second being bothered about these things. You are very right..we should all enjoy the time right now. 

Lee

Hi Hilts, yes you are correct - we are fortunate to be living in Spain and today we went for a walk on the beach and a coffee. We have also just booked golf for Tuesday - my Dad will try to walk the course as he is still fit and strong. 

It's amazing that only when a huge tragedy occurs do we realise how meaningless many things are that we all put importance to...and really we shouldn't waste a second being bothered about these things. You are very right..we should all enjoy the time right now. 

Lee