Hi my mum had 8 weeks chemo followed by surgery 5 weeks ago. She is in considerable pain still and is also struggling with food. She manages to eat but after 3 days expels everything either by dumping or vomiting. She has a high pain tolerance and has had major surgery before but this one has completely floored her! She has very little energy and is quite low all of which is not aiding her recovery. Guess I'm just looking for light at the end of the tunnel, any advice you could offer would be gratefully received! 

Hi Georgie07

Firstly I am so pleased that your Mum has got through chemo and has had her surgery.

The recovery from my oesophagectomy sounds a bit like what your Mum is going through.

I would suggest that you ask her to try small amounts of soft food, no drinks at the same time. Then wait about 40 minutes and see if she gets dumping syndrome, if it's a yes then don't eat that sort of food again. Try something different next time. If she has no symptoms of dumping syndrome then have a small drink.

For me it took a couple of months before I felt comfortable eating smaller portions and getting less dumping syndrome. This is the hard part of her recovery, it's all about finding out what she can and cannot eat, once you get past that phase it does get easier.

I found that if I ate too much then I definitely got dumping syndrome, if I ate little and often then it got less and less. I remember my surgeon telling me that post op I would would be different and I would have to find the normal me again. It was a sound bit of advice.

Get your Mum to talk to a dietician as well. And one final hint is to start taking vitamin and mineral supplements.

lf you want any further help of have any other questions please post.

Pass on my best wishes to your Mum and stay strong  

Thanks Otto - how often after your surgery did you start to eat solid foods? She's being eating soft foods but has tried to eat more solid foods such as a slice of toast? she has no appetite so trying to get her to eat anything is a challenge! I'm not sure if she is trying to eat solids too quickly and this is what's causing the vomiting. Also, When did your pain begin to reduce? She's 5 weeks post op and finds it difficult to even sit in a chair for any period of time, she's on Tramadol every 4 hours with paracetamol but is still in considerable pain, not sure if this is normal? Sorry to bombard you but finding it really helpful to speak to someone who has been through the same surgery! 

Thanks Otto - how often after your surgery did you start to eat solid foods? She's being eating soft foods but has tried to eat more solid foods such as a slice of toast? she has no appetite so trying to get her to eat anything is a challenge! I'm not sure if she is trying to eat solids too quickly and this is what's causing the vomiting. Also, When did your pain begin to reduce? She's 5 weeks post op and finds it difficult to even sit in a chair for any period of time, she's on Tramadol every 4 hours with paracetamol but is still in considerable pain, not sure if this is normal? Sorry to bombard you but finding it really helpful to speak to someone who has been through the same surgery! 

No problem Georgie

weirldy for me I had more pain from when they cracked my ribs than at the abdominal site.

So I was on toast, yoghurt, monster munch and other really soft food for about 6 weeks list op. Then I was brave and had a burger on its own, then slowly started to eat more solid food. The key thing is small, and I mean small, portions. Eat slowly making sure that you chew everything. From now on your Mum will not be able to eat quickly. I pace myself and the main frustrations being food going cold before I've finished but she needs to take it slowly and trust me, she will get better.

I did have a few dark days but when I got past the dumping syndrome phase it has got easier.

Now get your mum to take it slowly and she will get better

Hi Otto thanks - it's really reassuring to hear your story. I think a lot of her pain relates to the rib rather than her abdomen as well. Can you remember how long it Took for the pain to subside? I notice you had follow up chemo as well, was this just a precaution and are you are now cancer free x

Hi Georgie

I have to be honest and say that it took a while, a few months. I came off the tramadol a few weeks after I went home, then moved onto paracetamol for a couple of weeks. I still have the occasional twinge, but I think that's where they went just on my shoulder blade.

I did have post op chemo, the same protocol as pre op. I have been given the all clear and I have been back to work on a pleased return then I decided that I would only work four days a week.

It's been a bit of a journey for me and my wife.

So a few other hints...

After eating try either staying still for 30 minutes or try standing up for a little while.

Get a bed wedge from Putnams, that will help with acid reflux

Remember not to bend over, can make stomach acid come up into your throat.

It will get easier, even with a few bumps on the way.

Hi Otto

so pleased to hear you have the all clear, I am sure it's been a hell of a journey for you both. It certainly is for my dad, he has become a full time carer overnight. Thanks so much for your kind words and advice it means a lot. Mum won't talk to anyone about what she's going through so I've been sharing your posts and she is asking the questions. Fingers crossed this will help her to be brave enough to reach out to others and realize she isn't alone in this. Best wishes and stay well x

Hi Georgie07

Just wondering if you are still reading these? If so, could I chat with you? Many thanks, kathymay

Hi Kathymay

I would be happy to speak to you - I can imagine how helpless you must feel at the moment. We all went through it and my dad found it really difficult as main carer. How can I help?

Georgie

Hi Georgia, I am wondering how to keep him positive, he gets down days, although his prognosis is good with none of the 76 lymph nodes removed within the tissue during surgery containing NHS cancer. Obviously it is more difficult for people to visit due to Covid at present. Do you know how long after  surgery it will be for his  immune system to get back to normal? How is your Mum doing?

Thanks Georgie

Hi KathyMay - the first 6 months were really difficult for my mum. She was very down as well - she had a pancreatic tumour removed a few years before and various other illness but had always been a really positive person. This surgery hit her hard and 18 months on she still is not back to what she was. Mum is cancer free but has been left with vomiting from the surgery and they have now said there is nothing else they can do. This gives her good days and bad days but she has had wonderful support from her nurse who still calls her on a regular basis. Please don't worry as This doesn't happen to everyone so try what Otto suggested with small meals little and often. This site helped her in the early days (big thanks to Otto as his advice really reassured us all). The surgery is just the start of this and the recovery is long but your husband is here and through surgery so it can only get better. Share these posts with him (I'm sure my mum would be happy to message him as well) and reach out to others who have been through it. As family members we can support but can't really understand what they're going through. If he's willing and strong enough seek out support groups or use this for now. Feel free to ask any questions  -  I remember how helpless we all felt in the early days so will do anything I can to help and make sure you take time for you too xx

Thanks Georgie, great to have this group for support. Love to your brave Mum!!