Mum struggling - oesophageal cancer

[1wokeuplikethis]

My mum (69 years) was diagnosed with stage 2/3 oesophageal cancer in October and has since received chemo and radio intervention. They aren’t looking to operate and it hasn’t spread. All good news.

However, she finished her chemo 2 weeks ago and while the pain is better she still cannot manage to eat anything. She has a feeding tube nightly, but will not or can not physically eat anything. My dad is looking after her and getting in lots of different things to try and encourage her but is beginning to get frustrated.

The worst thing is that she is currently just sleeping all day every day and has become increasingly withdrawn. In my dads words she has lost her spark. He can’t encourage her to even have a walk in the garden or anything.

At first I thought that maybe this is due to the chemo and it’s ongoing affects but now actually I feel like it’s a huge decline. How do you know when someone is resting because their body is recovering or simply becoming weaker? She is so vulnerable to everything, I worry if she isn’t eating she is further weakening herself.

I’ve not seen my beautiful mum since early December because of covid, but she had lost a considerable amount of weight before the diagnosis and she really is very frail and so tiny. I’m scared. I don’t know what to do and after hearing this latest update today, I really feel like we are approaching the end already. I just have a feeling, which I shouldn’t - the treatment was ‘curative’ treatment. They have no plans for surgery. She will have a check up in March or April. But I just feel like something is happening here and I don’t know what to do or how to help. I feel so far away.

I suppose what I’m asking, anyone with experience. Is it normal for the sufferer to simply be unable to eat short term but then after the effects of chemo and radio wear off they do manage to eat again?

I’m terrified of losing her. I feel so far away and so worried.

Sorry to hear that OP. It sounds very difficult with you not being able to be there. No advice I'm afraid but wanted you to know I am here to listen.

That sounds hard for everyone involved.
My dad had oesophagal cancer. It was over 20 years ago. He didn't have a feeding tube but did have a stent fitted if I remember right.
Can you speak to a gp /or nurse?

Is she under the dietitians? She should be if she has a feeding tube. Might be worth having a chat with them or the speech and language therapist re. Swallow/poor intake

I think you need to ask for a medical review. It's normal for treatment to knock a patient absolutely for 6 but there should be tiny signs of progress and she's clearly actively going the other way.

First port of call is her specialist cancer nurse team. Tell them you have a bad feeling. They work with cancer patients all the time, they pay attention to that sort of thing.

It's possible her body is just so weakened by the chemo that she's exhausted. I wouldn't be trying to give her any food without the speech therapist doing a swallow test or the dietician weighing in. Is she getting hydration through the tube too? There's always a risk of choking on anything taken orally with this cancer and she should be getting all her calories through the tube.

My father passed away from this cancer last year so i can understand how you're feeling. It is not easy to watch someone you love decline so quickly.

My dad had oesophagal cancer with a feeding tube and one thing that constantly made him weaker was forgetting his fluids. You need to see that your Mom is hydrated enough. If she can't swallow water well enough then you need to see that she gets enough hydration by the feeding tube.

Thank you all for taking the time to reply and I’m so sorry to everyone who has gone through it or had experience of this cancer with a loved one.

I actually spoke to someone at McMillan this morning, just the number from the website. Seems illy but I had to build up the courage as I wasn’t sure if it’s something for actual sufferers rather than family, and also I really struggle to talk about it. I’m very glad I did, the woman was so understanding and reassuring and with what I told her, reassured me this is a normal part of recovery.

I am going to attempt to try and stay positive unless anything drastically changes. She has been through a lot of treatment and the effects are ongoing, of course she needs time to recover. Maybe I sound deluded but it’s what I need to hold on to.

Your parents should have contact details for the team looking after her. I don't agree with the Macmillan advisor that you spoke with who suggested being in bed all day every day is a normal part of recovery when treatment finished a couple of weeks ago.
Ask the team for a review with her oncology team- face to face if possible. There are a number of reasons why she may not be eating post chemical-rad and that needs to be assessed by the team caring for her.
Re her not eating, if she is being fed via nj or peg then the dietitians will have made sure she is meeting her nutritional requirements and should be keeping in contact to see how she's getting on with the feed. Keep us posted x

Hi OP
Your mum will be under the care of a nurse specialist. PLEASE phone them and explain your concerns/ask for a review.

Yes chemo is exhausting. Is she still in tablets?
When was her last dietician review? Is she on any of the special high calories diet supplements to boost her energy?

My dad had recurring cancer of the throat and ended up with a laryngectomy after which he couldn't eat except by feeding tube for 3 months. He made a full recovery eventually and lived another 6 years until he died of something completely different. He was 93. I would speak to nurses / doctors and take their advice, ours were fab.

Sorry, I hadn’t realised there was more replies here as I hadn’t checked. She is having food supplements via a feeding tube directly into her stomach and the pain she is suffering is mainly from the site of the tube. There’s a lot of pain, swelling, soreness etc there. The nurse has been out to check it but she is having to change the dressings every day because of the amount of discharge. It is a worry.

She isn’t eating because it’s either too painful or she is suffering horrendous reflux or digestive issues even eating something as small as half a boiled egg. I think she is scared to try anything now. They have increased her calories in the overnight feed.

She has finished chemo as of approx 3 weeks ago but has been told the effects are ongoing and last several weeks (both the chemo doing it’s job and the side effects). I still don’t know if all of this is normal and I am very concerned about her. She has lost weight due to being unable to physically eat and the digestive issues and there’s really nothing to her as it is.

I really don't want to sound like I am hectoring you, but please try and get her to see the oncology team as soon as possible. There are a number of things that may help.
Pain in the oesophageal post radiotherapy is common and if she hasn't already tried it she could try Oxceticaine -this acts a bit like Gaviscon, but also contains local anaesthetic. It's taken half an hour before food to numb the oesophagus and make eating less painful. This can only be prescribed by the hospital team and obtained from the hospital pharmacy.
They will need to check for oral thrush as this can also make swallowing very painful.
Has she got a tube going through the abdominal wall into the gut? If so the site needs to be inspected by the team to make sure she hasn't got a infection at the insertion site and in the tube which could be causing some of the pain that she is experiencing.
She should definitely be on a PPI and may need the dosage increasing if reflux is still a problem.
If she has diarrhoea then again the team (oncology and dietitian) need to be looking into why this is continuing post chemo.
Hope she gets sorted soon x