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,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Hi BFG

I know - but day after day sitting here in hospital is soul destroying. I actually woke up crying this morning - never happened before.   Having a bad day - but I'll pick myself up again. 9 weeks today since I came in - the first just over 7 are a bit of a blur in ICU, but on the ward the days are so long!! 
 

I know I'll get there - it's because I feel so much better that I'm bored!!

Andi xx

Hi Andi - sending big virtual hugs your way and from a 6' 8", 18st, bfg - it'll give you a crick in your neck just thinking about it!

And you will get there - I've often been told that I go really quiet when I'm not feeling right, so the fact you are grumpy and bored and can't wait to get out of there is massive positive.  I even told the nurses that, nothing personal, but I never want to see you again! (Of course, I then went on to meet one of the them whilst doing the pcr testing during my final FLOT cycle).

cheers

bfg

Hi BFG

6' 8 " - at 5' 3" I'd need a ladder -but would manage to give you a hug - I still have the final chemo to get through - probably next year now!!  So want to go home 

Andi x

Hi Lee, 

Fear not, leaks are fairly common- I am assuming 'around the join' , quite fixable too i belive. It really is as BFG says 2 steps forward, some back n all. All the band of brothers have had some  issues along the way.

They will heal.

Keep keeping that faith.x

Hilts

Hi, 

As BFG said, I think you know the answer to this (: and lungs have to be 'match fit' to go through op if offered.

HOWEVER- I know what is going through her mind!! On more than several fronts (: I have 'dabbled' in the old 'baccy' over the years. Why? - because I enjoyed it ! , no doubt she does too.I grew up with nearly all of my relatives smoking. Walking through most of their houses was like cutting cheese.......My Nana and her sister used to sit with their packets of Navy cut, poppy tea and cards all afternoon (: both lived to mid 90's, but it really is luck of the draw.

It is a very personal choice for your MAm, to give up will help her chest, but will it drive her nuts. I know what it is like trying to get other people to do stuff they don't want too!!! and I know how I react if people try and tell me to do something I don't want to......it ain't pretty x

Most won't agree with my take on it, but she is old and wise enough to know what needs to be balanced.

Keep that faith

Hilts

Thanks Hilts 

very wise words, it's been an ongoing battle asking her to reconsider the fags! 

hope everyone is doing well today, these cold and long nights are not helping the mood in our house! 
 

Hello one and all.

I hope you can help. 

Our mum was diagnosed with squamous cell carcinoma of the oesophagus - and was treated with 5 weeks of radiotherapy/chemo. At the youthful age of 80, she has recovered remarkably well. It had not spread anywhere. She was/is remarkably lucky, but we do not know how successful the treatment has been. 

She has a peg feeding tube but is on a daily calorie deficit and is desperate to start eating again.

BUT. 

She is producing vast quantities of mucus that appears to start for no reason and leaves her feeling drained and dehydrated.  The mucus is clear and she says it feels as if she is wrenching/colic.  We think it is the oesophagus reacting to food passing through and the muscles being used. When it finishes she is OK - just a lot of burping.

As you can all appreciate taking pain relief is another feeding process - and she isn't in pain unless she is bringing up this mucus. 

Does anyone have any insight/suggestions as to what this might be and how we can help her to manage the symptoms so she think about eating again? 

Thanks in advance. 

Hi Dancing girl.

Glad to hear your Mam is trooping along.

Squamous cell- I don't know much about that, BUT mucus- yep a little (:

The body ' kindly' produces it to clear stuff it doesn't like/want. It is kind of a 'protective thing'. She has had a lot of cell murder going on down there and a devil a lot of irritation from the treatments-  A total pain in the butt nonetheless!
As with all of us on here, little steps, some forward and quite a few backward are order of the day!
You say she is being tube fed. So that at least takes the 'pressure' off eating. Lovely stuff it is !!
All I can suggest is to contact your MDT  'team' . They will know your mother's case. How long post treatment she is and how long the body being cross takes to improve.

Coughing up loads of gunge will be painful ,distressing and exhausting,but save trying to get painkillers in orally ask for liquid to go in tube.

Also , as for eating and drinking, a little of what she fancies n'all, but pressure is much reduced now that PEG is in.

Sorry, not to be more helpful, but defo get on to the MDT.

Best wishes

keep that faithHilts 

Hilts

He's also had to have the camera for polyps that showed up in large bowel - these have now been removed and the medics are all saying they would be very surprised if this turned out to be a problem.  He now has a fitness test booked in and the laperoscopy on 15th Dec.

Meanwhile he is struggling to keep down anything other than tinned soup (smooth varieties), tinned custard, yoghurt, ice cream (topped with clotted cream) and water.  He is having profein shakes prescribed by the doc and these seem to have slowed up weight loss.  Any suggestionsas to what he might be able to manage to eat?

It still feels like a bad dream from which I will awake.  We have been together since we were teenagers, married for over 40 years and he is my whole life.  It's so painful to watch him deteroirate and suffer ike this and so bloody unfair.  Our daughters are coping, but only just.

I just want them to start whatever treatment he will need to give him the best chance.  If the laperoscopy results are good, does anyone have any idea how soon he will then start chemotherapy and if so, are the likely side effects likely to result in more weight loss?

Thanks for that

He was diagnosed at the end of October, laparoscopy due on 15th December and everything else in between.  He has been appointed a surgeon and so hopefully, will go onto FLOT soon,

If/When FLOT starts, as the cancer starts to shrink (fingers crossed) will he be able to eat more normally again?  He is so looking forward to having  proper food and sick of chicken soup!!

Thanks for that

He was diagnosed at the end of October, laparoscopy due on 15th December and everything else in between.  He has been appointed a surgeon and so hopefully, will go onto FLOT soon,

If/When FLOT starts, as the cancer starts to shrink (fingers crossed) will he be able to eat more normally again?  He is so looking forward to having  proper food and sick of chicken soup!!

Hi,

That is the same date that my husband had his laparoscopy last year and he was diagnosed at the end of October 2020. Yes most patients seem to notice a difference after the second cycle so fingers crossed. Protein shakes/milk shakes are good, scrambled eggs and apparently condensed soup (I know he's fed up with soup!). Also adding skimmed milk powder to whole milk adds calories. Lots of butter, cream like you are doing. You should be appointed a dietitian and you can contact your upper GI Team for advice. 

My husband chemo didn't start until the end of January due to Christmas and a delay with the DPD gene deficiency test. It is a very worrying time - it is like a living nightmare. No use in saying don't worry. What I will say is the NHS staff are amazing and he has passed through several 'gates' to get to this point. It's hard to explain to others how stressful the waiting is as most people understandably assume an operation will be offered. We didn't really say much to many people as it was hard enough to deal with it ourselves. 

Do take heart that people do get through it and survive. My husband is over a year down the line and it isn't easy but there are several on here who have come out the other side. 

keeping the faith for everyone 

Milly

Hi Distraught

So sorry to hear about your hubby - it's a very stressful time for you both. I found that even after the first FLOT my eating was easier and it got better with each one - so fingers crossed treatment will soon happen 

Andi x

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 Hilts and everyone,

Just checking in. How is your husband doing now he's had his latest op - 5 pints now lol? 
Kev is doing OK, had a few issues with the 'dumping' but seems to have stabilised more. He is no longer on any painkillers so that may have an effect too as the stronger ones he's steadily decreased and can cause constipation so that could be a factor too. I have to say the hospital have been very good  as the dietitian has been in regular contact which has been helpful and reassuring. Weight gain is proving difficult after losing two and a half stones! Good job he was able to put some on pre op(s)!

We've just come back from 2 days in York with close friends where we attended the Carols by Candlelight in York Minster which was very special. This time last year he had just had his investigative laparoscopy and we were waiting for results. For you Hilts I think your husband was either just about to go in or was in hospital?

We have decided to postpone the holiday to Tenerife until end of March - fingers crossed! 

I hope everyone is chugging along at what can be a very difficult time of the year BUT there is hope. 

keeping the faith, as always, for everyone

Milly

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