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

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!!

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