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

Glad to hear you're doing OK Andi !

Hi Tracy, [@Hilts]‍ is our resident expert on this !

Her Hubby had a mystery persistent cough post surgery and investigations etc to get it sorted so I've no doubt she will have bags of advice and knowledge on it to share with you !

Thank you Redski - it a long and slow process - but getting there. Hope you are OK x

Thank you Andi,

It is early days, I hope I get to that stage sooner rather than later. 
 

Anyone have any tips for mental health while I cannot walk more than 10 yards without being sick? At 30 it's really playing on my mind that I can't do anything anymore really, not to sound ungrateful to be alive folks sorry. 
 

Brotherhood

Yes, just focus on and remember that your current situation is not your forever situation fella.

Like Andi says, one day you'll realise how much progress you've made without knowing and feeling it until that time.

Rest and sleep is such a good healer too, don't push yourself too hard, rest a lot - it really helps.

I suffered after my op with foamy phlegm coming back up too but it's gone now and passes - you will get there, just keep walking forwards through your journey and stay positive !

Youre post op with all your bad cells removed in surgery, you've much to be grateful for, even if you are feeling a bit battered, bruised and through the mill currently !

Hi Tracy

nearly everyone on here has had the cough , regular sinus rinse with saline solution has done the trick for me , you can buy a kit it at your chemists.

Regards 

Douglas

Wow y'all quiet for weeks then a flurry - yay.

We have a new member I see Brotherhood- welcome to the oesophageal cancer club - the club no one wants to be a member of, but here we all are (:

I have to say none of us have ever met, and none of us are medics- just experts in the lived experience and living the dream ! on the fastest rollercoaster in town I feel are very close bond with all us strangers on here, as we all 'get it' enough cheese (:

I am afraid brotherhood, that you are completely common (: - what you describe is how it is post op- pretty sheeeeite, BUT, slowly bit by bit you creep back up. Looking back I would say my husband took about 4 weeks to get on anything remotely solid, he had no appetite and those 'delicious' over night feeds were RANK, but day by day it does get better he went for his first outdoor walk, only to the top of the road and back about 8 weeks post op, then creep creep, little by little better and better, but it sure ain't a quick recovery. As for your SATS etc, yep, your lung was deflated! and it really won't be happy about that at all! Most on here have collected some post op extras, it is a maahoosive op, about as big as it gets- mine was short of breath, rubbish SATS etc for about 10 weeks, then guess what, little by little, day by day bingo. You WILL get there, keep sipping fluid and your feeds going on, then just pick at stuff, literally anything you fancy, the wired thing being the more you eat the better your appetite- go figure, but you are very early days, and it is a bit of a twighlight zone, but give yourself another 6 weeks of day time TV- and you'll be legging it to the bottom of the garden and back with relish x

NOW , who mentioned COUGHING !!! Yes, we are the experts in that department- look back at my posts they are EXTENSIVE LOL . We know it is nothing 'dodgy', but it is still driving us nuts , none the less (:Husband has had 2 scar tissue stretches and a hernia repair, which slightly helped , but still coughing he is, although I have to say , it has improved slightly and has better days, the surgeon next plan is to go for a barium swallow to see where the any food and fluid is going ( green face emoji). They are fairly positive it is down to irritation and likely to be something coming back up what remains of his stomach/oesophagus. BUT, my husband is not the best at doing what he is told, so when they said food needs to be 'little and often' I think he turned deaf, because he eats as he always has done grrrrrr, which I think is what makes his guts full and bubbling back- although , when he downs several pints it is much better!!! Funny that! , but I guess all that fluid is washing he guts out, so no food overload left to irritate. He has behaved himself better this week, grazing throughout the day and guess what?? Much improved, maybe, by some miracle the message might be sinking in.

Take care y'all and keep keeping that faith- although tough sometimes

Hilts x

Thankyou for the responses folks really appreciate it,

I'm just hoping this constant vomit and wretching doesn't cause any issues inside as the last place I want to be is back in hospital. 
 

Great community to find,
 

 Brotherhood

Hi Brotherhood, hope you had a good weekend.

It shouldn't do ... my sickness and wretching on Post Op Chemo were levels I've never experienced before and would be literally feeling like I was turning myself inside out it was so severe and bad from the chemo after the op.

It didn't do any damage though, and am all still intact and out the other side now.

Keep going, you can do it and it does get easier and it does get better than this !

Good Morning everyone, hope you are all good xx We did it, myself and Shaun got married yesterday up in Gretna Green, the day was beautiful, happy and full of friends, and laughter xx Chemo starts on Thursday for him so one more day of rest before we fight this xx love to all from Mr and Mrs Barber xxxx

Good Morning everyone, hope you are all good xx We did it, myself and Shaun got married yesterday up in Gretna Green, the day was beautiful, happy and full of friends, and laughter xx Chemo starts on Thursday for him so one more day of rest before we fight this xx love to all from Mr and Mrs Barber xxxx

How wonderful ! Huge congrats Mr & Mrs Barber !!

That's wonderful news Manfyh! Congratulations! :happy:

I hope you're able to enjoy these next few days of wedded bliss together before Mr Barber's chemo starts on Thursday.

Fingers crossed he doesn't experience too many side effects but if either of you have any questions about the chemo or would just like to talk things through with someone then don't hesitate to get in touch with our cancer nurses. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

Wishing you both all the best on this journey and a wonderful, happy marriage.

Steph, Cancer Chat Moderator

CONGRATULATIONS xxxx

Heeeyy - big clapping emojis - smiling face with party bunting emoji.

Well done Mr &Mrs Manfyh xxxx

You might think it is just the 2 of you, tucked up in wedded bliss but nope, we ALL on here are tucked up with you !!!!
Keep keeping that faith

Hilts x

Hi All 

Hope you are all continuing to improve - or getting on with the treatment. 

Because I had a tracheotomy for 8 weeks post op, my breathing is still very bad and I can't walk far or do anything without getting very breathless. I am waiting for Pulmonary Rehabilitation but due to Covid the wait for assessment was 18 weeks - 9 have gone but still a long wait. Has anyone else needed this - and if so was it successful?  I am thinking about trying to find a private alternative- not sure where to look, but if it will help it will be worth it 

Thank you

Andi xx

Hi everyone,

Unfortunately my Dad passed away last week. The regular members on here will know the journey we have been on for the last 2 yrs.

Post surgery my Dad had a lot of complications and never managed to recover.

May I take this opportunity to thank all the very good, supportive people on this 'rollercoaster' journey that we are all on.

There have been many ups and downs and I have found this forum incredibly useful and inspiring- it seems that the people commenting on here, are the people that only 'truely' understand what you're going through.

If anyone wants to contact me directly, to discuss anything, please feel free to private message me - I feel that if I can offer any support and experience, I will do. We have experienced many things good and bad.

Good luck to everyone on this *** journey.

Lee

Oh Lee - I am so very sorry to hear your sad news. It was such a long battle for your dad. My thoughts and prayers are with you and your family 

Andi xx

Awwww Lee, 

What on earth can I say to you, I truly do feel  for you x xxx
but Lee, thank YOU, For being on this rollercoaster with us. We  all , I think feel for the others ,the highs and the lows.

You were/ are an absolute gladiator for your Dad, you did him proud. 
For once in my life I am a bit lost for words !
PLEASE, do check in on here, we would genuinely miss you

So for now Lee, bye and speak soon

xxxxxx

Hilts

Hi Lee, hope you're OK and thanks for the update.

We've all ridden that Roller Coaster with you and know your Dad would be immensely proud of you and how you helped and advised him along the way, and sharing bits from here with him and back to us too - you were most definitely a rock for him.

One thing my Mum said to me when she passed which has always stuck with me and I hope you can apply this with your Dad too is that it's OK to be sad for a little while, but when you think of me I want you to do it with a smile and not be sad. So, focus on the happy memories mate and always think of him with a smile on your face !

Raise a sangria / San Miguel for me mate and keep on trucking !

God bless ...

Lee, I'm so sorry to hear of your dad's passing and on behalf of everyone at Cancer Chat HQ, I would like to offer you our deepest and heartfelt condolences.

Our thoughts are with you and your family at this very difficult time.

Kind regards,

Steph, Cancer Chat Moderator