Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

1 step forward, 2 steps back

Hawky
Posted by

Hi everyone,

My mum started (but could not finish) her first cycle of chemo earlier this month. She had a stent put in towards the end of July which had moved up her oesophagus and was removed last week. After 5 days in hospital (dehydration and low blood pressure) she is now back home with the idea being to build her up while the doctors decide whether to continue with chemo or bring forward the operation.

While she seemed to keep soft food down in hospital, she has been sick twice since coming home on Monday and still brings up this clear liquid that we were told was irritation from the stent.

Since bringing her home we feel like we have had little contact or guidance from the medical team - just when we thought things were starting to move with her treatment we are back to square one where she can't keep her food down. Her weight is around 7.5 stone now, a stone less than when she started chemo.

It is so frustrating. We have expressed our concerns to her GI nurse but we feel like we keep getting told the same thing 'little and often' / 'soft food', etc. In reality it is just not that simple. In hospital she seemed much better but we did wonder if they had discharged her too soon (considering she hadn't emptied her bowels during her stay and her current weight).

Has anyone experienced a similar situation of having a stent removed and chemo suspended?

Hoping you are all having a more positive day than me,

Hannah

Hawky
Posted by

Well I am aware I am replying to my own post but I really wanted to know what people's thoughts are regarding the psychological effects of this disease? We have really been struggling this past week to get mum to eat and drink. After numerous calls to her nurses the doctors have decided to try another stent this week. This was meant to be the period where we built mum up for her chemo next week but she is just losing more and more weight.

She has been sick a few times but can keep certain things down like soup and the odd biscuit. Of course I know she must be feeling horrible but we are starting to think she is avoiding food. I literally have to nag her to drink (I know she is very dehydrated) and remind her to try and keep snacking. At most she is managing a couple of spoonfuls of food a day, and 1/2 to 3/4 pint of water.

Dad thinks she has given up already. I think she has developed a phobia of food. We just don't know what to do anymore. I have tried completely backing off, then gentle encouragement, then outright nagging and bossing her around.

She has an appointment with the consultant tomorrow to check how she's doing so of course we will tell him everything that has been happening (we have already told her nurses). I have a feeling they will keep her in and put her on a drip again (this will be the third time) but we are just going round in circles. The worst thing is we have another round of chemo and an operation (hopefully) to come yet which I know will be even harder.

Anyone else gone through this? Poor Dad is at his wit's end and I am getting there too. I really can't bear to watch mum fade away like this.

Hannah x

DIANAMMM
Posted by

Cannot help but know it is important to keep hydrated as they wont do chemo unless your mum is well hydrated.    They will probably put her on a drip again.   It is a horrendous type of cancer and every case is very different.    My hub could not have more than 2 courses of chemo had bad reactions to it so was lucky they operated and removed it.   There are very many ups and downs and nothing is guaranteed even after the op. but stay with it.   Treat every day as it comes as a hurdle to get over.   Good luck

Diana

vivk
Posted by
Hi Hannah, My Mum went onto fortisips and fortijuices. You can get them on prescription from the doctor. In the last month before her op she had a NG tube with bags for Nutrison for extra calories. The NG bag was a short term thing to get her weight up. Mum was really low before her op as she'd lost a lot of weight and was so fed up with everything. One of the nurses recommended the book 'The Secret' which she read and it helped her. I hope tomorrow's meeting goes well. Ask as much as you can and take notes. Make a list of questions. Stay strong and take care, Viv x

VivK

Hawky
Posted by

Thanks Viv,

We have tried all of the prescription stuff - fortisips, caolgen, fortijuice, complan, you name it - she just doesn't like them and won't take them. The only thing we have managed to get her to take is the pro-source sachets, but what good they do with only a couple of spoonfuls of food I don't know.

Sorry for the depressing post - just feel worn out with it all. I wish we could see at least some small improvement but she just seems to be getting worse. To think she has gone from 11 and a half stone to under 7 and a half stone in the last 4 months is just horrible.

I will look up that book. My brother and Dad will also be at the appointment tomorrow so we will be sure to take notes between us.

Thanks again for the advice x

vivk
Posted by
My Mum hates them too. Maybe the NG tube might help? See how tomorrow goes. Good luck. I'm sure some progress will be made. Don't apologise for being depressing! Everyone on here understands how hard it all is dealing with this. Keep in touch and let us know how it goes tomorrow. X

VivK

Hawky
Posted by

Thanks Diana.

The hydration is a big problem, I keep topping up her glass and trying different squash drinks but I think we are caught in a vicious circle as her tongue is now getting infected from the lack of fluids and that is making everything taste horrible so she wants to drink even less. We feel as though she keeps making excuses as well - if I suggest she try a biscuit she'll say after she's had a lie down, or after she's done something else, etc. I don't know if the lack of food and drink is affecting her rational thoughts, or the thought of anything in her mouth is too much, or what. We were at the same point a few weeks ago when she was on chemo where she couldn't even bear to brush her teeth. Except now she isn't on chemo and hasn't been for a week and a half, so we thought she would be a bit better.

Every day is a real battle, and I'm really struggling to juggle work and study on top of everything else at the moment.

Tonight seems to be my night for moaning - sorry! Hopefully tomorrow will look a bit brighter.

x

Mushty
Posted by

Sorry your Mum is not doing better.it is an awful worry for you all  

My husband also struggled until they got the stent right.

Saliva/ mucous goes very sticky and we found that particularly if he had been asleep it would clog the tumour so we started each day with a flush of warm water to try and clear a passage then a drop of fizzy water before and after each try at food 

We concentrated on clear fluids when he was really bad and made sure they were calorie rich 

Peters chemo was initially delayed as he was to ill 

I really hope that your Mum will get the help she needs tomorrow, 

Best Wishes and Hugs Mushtyx

Mushty X

DIANAMMM
Posted by

Moaning helps!!!!!!!  If you go on the chat line there is usually somebody who knows more than me,   It really is horrid. I know my husband was sick black stuff before his op. He wanted to eat but was sick all the time.    He had his op in july 2012 so we are doing quite well.    It is 14 months now and no sign of it returning yet.

Diana