Hey Distraught and everybody,

yes, it is all horribly intesnsly emotiona - the whole tapestry of human emotions that change on an hourly basis! You won't feel it now, but it does get slightly better.

Hideous seeing most important person in life suffering. I had thoughts right at the start, that my husband should actually stop gagging and vomiting when he ate after diagnosis,as we knew what it was and he could stop doing it now! Wow, how nuts is that!! I put that type of thought down to part maybe denial, wishing it wasn't true etc, who knows, but there the old adeno was regardless.

In terms of eating, absolutely anything he can get down, the higher in fat and protein the better. My husbands swallow improved after first FLOT, but really really improved after 2nd , he was back on normal grub! . When your husband can eat better, take the opportunity to fill yr boots! Put on as much weight as possible! I'm not talking sumo size, but after operation  and post op chemo, he will loose it.My husband probably dropped a stone and a half in that time, stabilised about 4 months after all treatment finished and it is now creeping back up, probably about a stone lighter than before all this kicked off in July 2020.

YOU WILL GET THROUGH THIS- as you can see many of here are post treatment and currently visable disease free. Good things do happen.

Keep keeping that faith.

Hilts

Hi [@Milly58]‍ 

So good to hear from you, I check back every day to see what is going on. Your trip away sounds lovely and even better to reflect on how you were feeling/thinking a year ago. What a journey you have been on but being through the other side inspires others still on their journey or travelling alongside a loved one.

We are having a bit of a tough time with dad at the moment. He's still in ICU and had a tracheostomy fitted this week....his lungs are not happy! But we are positive, he's strong and like many others on here our wonderful NHS have brought them through the other side! 
 

I hope everyone else is doing well, especially Andi and Lee (dad) being at a similar stage in treatment you are both in my thoughts often.

Scott

Hi Scott,

Thanks for replying and I'm sorry that you are having a tough time and that your dad is still in ICU. Complications can happen and the road can be longer than planned but the NHS and staff are so skilled and caring. Your dad obviously needs extra support/intervention at the moment to aid his long term recovery. I am glad that my husband's  journey and the journey of others on here are helping you at this time.

I too think of others including Andi, Lee and his dad.

keeping the faith

Milly
 

Hi all,

Milly - good news to hear he's off the pain killers- that's steady progress. 

Scott - I think our parents are on a similar course!

Ok..we've had a rough time since I last wrote. My Dad was in icu post OP for longer than expected but finally on the ward. After a week the scan showed there was a leak. Dad was then taken back to surgery and had a clip fitted. And a feeding pipe through the nose. In post OP resting room his heart started racing and he was back in icu for a few days until it stabilised and then back on the ward. Another scan a few days ago also shown that it hadn't healed and it's just a waiting game and another scan around 27th (Christmas in hospital !).

Also there have been other setbacks...twice air found behind the lungs so a drain had to be put in and the food pipe has twice come loose so he is becoming well known in the endoscopy department!

As bad as this has been (4 weeks since operation on 18th Nov), the worse news was that on the last scan they have found 3small tumors on the liver. This is really deflating to hear after the whole operation and all that goes with it.

The oncologist came to see Dad and said that he needs to get stronger and the immune system needs to improve and when it does he'll come up with a plan of treatment! Sometimes we think things can't get worse but they often do. 

As it's been said many times...its a rollercoaster!

Lee

Hi Lee,

So very sorry to hear that your dad has had these setbacks. The positives are they are sorting him but it's very upsetting when you take a step forward to then feel like you've gone back two steps. We called it 'snakes and ladders'!
They will do everything for your dad so he can get stronger and then they can tackle the tumours on his liver. The liver can regenerate. Have you been able to visit him? Is he well enough to go outside in a wheelchair to get some fresh air? I was able to visit Kev twice in ICU, three times in HDU and take him out in a wheelchair with his oxygen tank as well. I'm sure how COVID is affecting Spain? I hope you can see him. 

I hope it helps to know others on this road have taken twists, turns dips and hills but have come out the other side. It's not easy to put it mildly. Christmas can be celebrated on the beach when your dad comes home with Santa hats and jingle bells playing! 

keep the faith Lee we are with you in our thoughts and willing your dad, Scott's dad, Andi and everyone on to better days

Milly x
 

Thanks Milly,

Yes we can visit my Dad day or night now he's on the ward.  My Mum has been staying every night and I've been visiting twice a day. The covid restrictions are increasing again so they are being very thorough. One day at a time!

Lee

Hi Lee,

I'm so pleased that you are able to visit your dad and it's good that your mum can stay with him too.

keeping the faith

Milly

Hi y'all, 

Been very quiet on here recently.

I'm stuffed up with Covid ( growling face emoji) running riot around here. 8 days in now. I would describe it as foul cold/ mild flu. But most of all a pain in the ******. 

On the upside we finally managed to get tattooed, they are lush. It was/ is a 'celebration' of coming out the other side,1 yr exactly since op, disease free at the mo, and also a large part of doing what you like! All part of the ongoing Keith Richards health promotion plan. BUT my biggest stress is showing my M&D !! Mum is going to go nuts!! I am 52, not 2!!!.

Millie , you are absolutely on the money with snakes and ladders, isn't it just. 
Husband is on good form, not got the lurgy yet.... fingers x emoji's. To all those still on 'active duty'- best wishes and keep keeping that faith.

Hilts xxxx

Hi Hilts and everyone,

I hope you are recovering  from COVID and you'll soon be free! Glad you've got your tats to mark the anniversary of the op! Proof you can come through and out the other  side.  Kev has been asked to be involved with a new initiative to talk to others patients about preparing for the operation.

keeping the faith for everyone 

Milly