Stent

Dear Stacey, 

I am in a similar situation with my beloved Dad. He was diagnosed at the end of August. Surgery and chemo were ruled out due to his heart problems. Unfortunately the PET scan before his radiotherapy showed that the cancer had spread to his bones. They went ahead with 2 weeks palliative radiotherapy in October and he was doing well until this last week or so. He looked really well, had put weight on, had started eating more food etc. Our bubble burst when he started with pain in his side and back last week. Then over the weekend his swallowing deteriorated with an excessive amount of mucus production (probably what you’ve described as bringing up saliva).  He’s had a barium swallow today and they’ve told us that the tumour has grown and he now needs a stent. I am also frightened, not so much about the stent insertion, but about what happens if it doesn’t work. I don’t want him to end up with a PEG. I can’t bare to watch my Dad suffer; I’m just petrified about what we are going to have to face. My Dad means the world to me. I’ve always dreaded losing him, but never imagined it would be this cruel. 

When is your Dads procedure? (not sure if you meant he was having it done that day or you’d reached the decision to have it done that day). Just found out my Dads is on Friday. I hope it goes well for them both  xx

My husband (stage 4) had a stent fitted in July 2022 when he could no longer eat or drink. It has been a godsend. He has been able to eat a wide variety of foods (with caution) as a result. It was painful at first and took a couple of weeks to settle so good pain relief is essential. In November 2022, swallowing problems returned and he had to have a 2nd stent fitted. Since then his food choices have become more limited but he is still able to eat solid food. He is extremely reluctant to have a feeding tube. Being able to eat and drink is an essential part of his quality of life. So any discomfort caused by having the stent is worth it to him and as far as he is concerned, it is "magic". Wishing you and your Dad all the best.

Thank you for that very positive message. Your husband is doing so well, that’s wonderful.  I agree the thought of not being able to eat and drink at all is horrific. There’s so many nightmare scenarios running through my head at the moment, it’s torturous. I wish there was an off button. Thank you for replying and I hope your husband remains well for as long as possible. X

Hi Stacey

My mum had a stent fitted and whilst the first few days were a little rough with getting used to it afterwards she was able to eat. I will say though a stent is not a cure and so my mum still struggled to swallow on occasions, so I would still give her easy to eat food. 
sadly my mum is no longer with us as she wanted quality of life over quantity. 
sounds like your dad is a fighter after recovering from the first round of chemo. I hope the op goes well and he continues to fight this. Xx

My mum doesn't want to fight this, at 81 she is tired and just wants quality over quantity like your mum, she is considering the stent as that is the only real option for her as she thinks radiotherapy will be too exhausting. She struggles to be up for more than half a day most days now. Can I ask how long your mum had her stent in for?

I am sorry for your loss. x

Hey space 

my mum had her stent in for about a month or 2, it was a mesh one so thought that with radiotherapy would be a good route to go down but my mum didn’t want to keep going into hospital all the time and I had to respect her decision.

My mum used to get tired too but after she had the stent and came home she wasn’t having afternoon naps anymore whether it was from the stent or not I’m not sure, but she was just so glad to be able to eat some food comfortably as she was living off of ice cream before it was fitted. If she was here she would recommend it and as her daughter it did help knowing she could eat something over nothing. 

thank you it’s been 2 months since she’s passed so just taking each day as it comes but trying to continue her legacy in helping others and hopefully I have helped you. 

be strong for your mum, it’s hard to watch and you will need to be prepared to care for her. But she is still your mum and this illness does not define her, try enjoy the things you did pre diagnosis. I’m sure it will help her.

sending you strength xxx

Thank you for your wonderful message, it truly has helped me. I am sure your mum is very proud of you.

We want to do the things we have always done, I know my children want some quality time with her, we are trying to take each day at a time at the moment. With only finding out yesterday how little time we have, I have the unenviable job of explaining to my children how little time she has this weekend.

I will try every day to give her something to smile about. Thank you for your kind words it is very much appreciated.

Remember the good times with your mum, I am sure you have many happy memories xx

Thank you so much, your comment brings tears to my eyes!! ️

all you can do is take each day as it come and enjoy each moment as much as you can despite the obvious, how old are your children??  

I’m always telling myself to remember happy times and when my mum did not have this illness as I don’t want it to define her and be what people remember her by. 

I can imagine you are being strong for the whole family. But don’t shy away from expressing your emotions, whether to your family or in your own space. 

sending a big virtual hug xxx

Skyfullofstars,

Its been a roller coaster of days, but trying to keep putting one foot in front of the other, reminding myself that I am no the one fighting this in my body, but my mum is. She is the real hero and amazing person. I am trying to remember me in all this, but its not easy, tears come at the oddest of times.

My children are 26, 23 and 19. Thank you for the virtual hug, it seems odd, but talking on here is a comfort as people walk the same journey.

Try to remember the laughter, the smiles, the silliness of life, whether during or before the cancer. We have many years to remember. sending you a virtual hug back x

Hi Skyfullofstars space and others. I have just jumped over into this forum as I was looking for discussions on stents. My Mum (72) was diagnosed with stage 4 small bowel cancer 3 weeks ago and has been given a very poor prognosis. No surgery/treatment. She had a stent fitted a week ago today and your comments have reassured me how well she is doing - eating cornflakes, stewed pears and custard and rice pudding mostly plus jacket potato without skin but with cheese. Tried pasta with sauce today but no go. She is like others “full” all of the time and so has no real appetite and does not fancy much. Tumour is at top of small bowel (duodenum) where it joins the oesophagus. Think part of the problem is that all of the literature we have been given on stents suggests that you should be able to eat more solid foods after 3 days so she has been disappointed she couldn’t especially as she now can’t have a digestive biscuit or toast which she was enjoying the day before the stent. I know the stent will be the right thing “long” term but I do wish they had warned us all how slow it might be afterwards - especially Mum. Lots of the literature needs changing from what I can see of people’s experiences here. PS - I have a condition called eosinophilic eosophagitus which causes scarring and narrowing of the oesophagus, so whilst I do not pretend for a minute to know what our loved ones are going through I do know what it is like to have difficulty swallowing and get food stuck - not had a steak for 20 years. They are all doing so well.