If anyone can give me any help from personal experience it would be greatly appreciated .
my mother was diagnosed with osophageal cancer and at her age the only treatment option offered was a stent which she had done on the 2nd jan. because she is in her 80’s they kept her overnight . She was sent on her way the next morning with no information or advice ( shocking) we are now using google and struggling to find out what is normal and what isn’t. day one hospital gave mum porridge which she managed a few spoons of and she was sent home . At home she is struggling with pain and burping and crying lots and it’s heartbreaking . The stent we were told is a spring with a valve and plastic coated lining and should take 24 hours to open fully . ( so it should be by now ) The pain is bad and all she has been given is paracetamol . Is this adequate ? Anyone else had this op and been in lots of pain and gassy burping discomfort . She was a fit active pensioner on no medication at all until this cancer started causing swallowing issues. Nobody would believe her age she was as fit and active as a 60 year old. she is scared to eat because of the pain and is drinking but not a lot , she tried to eat soup today with bread dunked in it and gave up crying in frustration that this supposed op to help doesn’t seem to have done anything except give her an unacceptable level of discomfort :-( any advice or suggestions great fully received. Sorry for such a long post. Im feeling like we have been abandoned over a weekend by the nhs and left to get on with it. No help no support and no idea of what we should be doing food wise.
I'm afraid I'm not going to be much help but just wanted to say that my mother is in a similar position to your mother but actually a stage behind as the decision about treatment hasn't been made yet. She also sounds very similar to your mum. She's in her mid 80s and apart from the swallowing problem also as fit and active as a 60 year old. There just might be the possibility of some radiotherapy but that's looking less likely since the PET scan showed the cancer has spread to a couple or nearby lymph nodes. We should get a decision on that this week and if it's a no to radiotherapy she will be having a stent too. I have heard it painful initially but I'm really sorry to hear about the level of distress and discomfort your mother is suffering. It really isn't good that she isn't getting any support at the moment. Has she had any advice from a dietician? My mum has found the specialist nurses on the upper gastro team together with the dietician really helpful. She eating mostly soups and pureed foods ( with plenty of added double cream and butter which are for once encouraged!) but supplementing with prescribed nutritional supplement drinks.
I do hope she finds things settle down quickly. Christmas does seem to have made things harder as appointments etc are rather on hold and NHS staff rather thin on the ground for a while. Hopefully you and she will get some helpful support this week.
Send my best wishes to your mum.
Hi minty Thank you for your reply ,
we have had no contact from the hospital upper gi nurse. We will however see the same palliative care nurse that was visiting my step dad until he died three months ago, her first visit to mum will be this week. That will be the first contact other than the referral for a ct scan 4 weeks ago then the decision to stent and the stent being fitted there is only one upper gi cancer nurse because the other one left and they haven’t replaced her yet then the other one went sick so we have been left with no support at all for the last four weeks. Mum was told at the camera investigation that they couldn’t get it down past the stricture and it looked like she had cancer from what they could see but the nurse is not here today to talk to you you can ring on Friday for the biopsy results!6 months ago they did a barium swallow and found nothing and told her it was probably old age then when she went back told her it was probably stress, Because her husband was palliative he died 3 months ago. Finally a gp
ordered the endoscopy 4 weeks ago and since then it’s been a nightmare. Anyway we ended up calling 111 today because of the level of distress and pain mum was In , that doctor couldn’t offer any advice as to if the stent would be causing this but understandably didn’t want to refer her into a hospital on black alert that was telling people to stay away for her to be stuck on a trolly in a corridor. She did however give us liquid morphine ( a life saver ) which is helping no end. And gave mum a mini enema to get things moving because her tummy was full and making her feel worse. We will see what Monday brings and get hold of a gp for proper pain meds and assess things.
if they place a stent for your mum make sure she is taking a good laxitive as the morphine they give in hospital bungs them up and make sure you have orimorph or similar to come home with to manage the pain. ( the hospital pharmacist said “oh paracetamol is a good enough pain relief” it seriously isn’t!) Also today we got some anti sickness medication and Omeprazole to help with The burping and reflux . Make sure you ask for all this stuff written up so you can get it if you need it . It will save your mum the situation we have been in. I think mums care has been badly managed by us because we had no idea what we were doing and it’s all happened so quickly. it sounds like you are having much more in the way of support I really wish your mother well and hope that the heads up about laxative and pain relief is helpful for her. Good luck with it all . I will post again and let you know how mum gets on with the stent I am hopeful this is just teething troubles and will all settle down in a few day’s. Have to try and remain positive and hope for the best. Our nhs is Marvellous even in very trying times we are so lucky to have such a wonderful dedicated staff in hospitals having to work under such difficult conditions. It’s all just been very unfortunate timing and circumstance.
Well what a difference a day makes! Mum is so much better today. yesterday I honestly thought things we’re looking very bleak, but today she is bright, and trying to eat, and in much less pain. I am daring to feel hopeful that the stent has made an improvement. It’s early days but we have had a much better day today.
We now have a good supply of pain relief and she is so much happier and hopeful. so glad to be able to post something more positive :-)
That really is wonderful news! So good to hear your mum is so much more comfortable and you can all feel more positive. Your advice was excellent too and we will make sure we are are prepared with pain relief, laxatives, anti nausea drugs and omeprazole. The drugs are all rather familiar to me as it happens.
I've been in remission after chemo and radiotherapy for large abdominal tumour diagnosed as Non Hodgkin's Lymphoma just over a year ago. My dad had alzheimers and sadly died while I was having treatment and we decided build an annex and move my mum up to live with us. She'd had a really tough time looking after my dad . She moved in in August and all was going so well. She's made so many friends and it felt like she had her life back. The swallow issue started in about October. It does seen so unfair. It sounds like your mum and family have had a really tough time too.
We do however count our blessings and thank goodness mum is with us, not 150 miles away. Plus the local GPs and hospital have been brilliant.
I do hope your mum continues to improve and the stent makes life easier and more enjoyable again.
Do keep me posted
Big hug Minty
As a oesophageal cancer patient I am so pleased to read this after your posts that was scaring me.
I am in palliative care and being told less than a year of life expected.
I was diagnosed 5th December 19 and I have received no treatment not even a pain killer, I was on ranitadine to control acid reflux before diagnosis, I have been offered a stent but I know nothing about stents, how they are fitted or do they last for my life time or ?.
I see an oncologist again ( at last ) Friday 24th January where I will be fighting for palative chemotherapy, I am unable to swallow at all at times but then I get a day or part of a day when I can enjoy a tin of soup with a little bread I am torn between having a stent or to carry on struggling.
I feel if my life expectancy is so short why put myself through more stress and pain, I am disgusted with the treatment or should say lack of treatment, I was even told by phone by a Macmillan nurse my condition was agresive and treatment would not be an option, you may have twelve months, this was 19th December I live alone with no family close by, I was in a cold sweat with no one to talk with I have not heard from my so called caring Macmillan nurse since.
Do I put myself through having a stent or just hope I can make it to the end, I also have secondary liver cancer.
Hi there Chuddy
well based on how mum is now , I would give the stent a go. mum is amazing now and yesterday managed to eat a chicken pie after weeks and weeks of struggling with soup and purées.
The first couple of weeks after the op were difficult she has had a lot of discomfort but we have that all under control now with paracetamol a very low dose patch and liquid morphine for any break through pain ( she is hardly needing that) pleased to report she is building her confidence about what she can eat , the trick is to wash the food down with fizzy drink or water. I am sorry if my post scared you, we were all scared and looking for someone to reassure us that it would get better. It was very insensitive of me to put something up that was so negative but I was reaching out for answers to reassure her and myself. Forgive my thoughtlessness. For mum at least it really has made a massive difference, and it’s given her back the ability to eat and enjoy social things like going to the cafe for coffee and cake which had become impossible . the actual procedure of having the stent fitted was very quick and easy and only requires a single night in hospital just to check you can eat and drink after . They scan and mark where the stent will be then place a guide wire slip the stent down to position and it slowly springs open to hold the oesophagus open that is all done under sedation so it’s not uncomfortable to have done . it takes up to 48 hours to fully open I believe some are 72hours (I think they use different types) and when mum was at home without the morphine they were giving her in hospital she was in quite a bit of discomfort but if we had known that we would have got liquid paracetamol and pain killers prescribed from gp in advance so that could have been avoided. And I am sure you can avoid it by asking for adequate pain relief to come home with. im so sorry you have had such a bad experience of care from the nhs which area of the country are you in ? I think it varies greatly as to how things are. If you haven’t already ask the Macmillan nurse about forms to claim a benefit that I think gives you £ 80 a week to help with Costs of hospital visits and extra help , if you have her phone number phone her and ask her to request them the money starts from the day they get sent out to you and is backdated and these things take time. The nurse will know what it is I cannot remember they have to get another form from gp to send off with it. it helps a lot to have that bit extra help. I hope you have a better experience at your next appointment. It must be bloody tough for you and my heart breaks for anyone facing situations like this without support to wrap round them .
sending you a big ((((hug )))) and please let me know how you get on. Ps. Just I case you go ahead with it and I don’t get to speak to you again , post op first couple of days keep diet really soft don’t rush things and think it’s not worked like we did . It takes a little while to open I would ask to be referred to a Dietician for help We have now been referred but it’s a bit late we have worked out what to do via google and trial and error . X
I know you had your appointment with your consultant yesterday accompanied by your hospice nurse and I was wondering what the outcome of the conversation was.
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