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.

Being an efficient and caring carer.

jayceeh5
Posted by

That’s good news, so pleased for you both, a huge hurdle out of the way. No questions are daft, just ask away because it’s an unknown world and sometimes the obvious just doesn’t compute! The medical staff are doing their wonderful work so make sure to take care of yourself too.

susannabanana
Posted by

Hello, we've just had the long op and still in ICU with tubes and machines everywhere. The surgeon did the same surgery that you mention and seemed pleased with his skills.

Do you have any advice on recovery procedures? My husband does have a very positive attitude but sometimes I worry that he wants everything fixed too fast!

Suppose I just worry about it all.

Thank you

susannabanana
Zappaman
Posted by

Hi Susanna, that is great news about the operation going well, so you can put that fear to bed. I'm glad you are not too shocked by all the tubes and equipment. Tell your husband if he tries to rush his recovery too quickly you will kick him very hard in a delicate area. I know I was in LA la land for a few days because of the pain relief drugs I was on. Thankfully they found out quickly after the surgery that the epidural wasn't working for me and put me on strong stuff. I couldn't really remember that, my wife told me about it several days later. Take your husband some lip balm as he will not be allowed to drink for a few days, stop him getting cracked lips. I developed a chest infection which is not uncommon, and the wound became infected so I was on an antibiotic drip so I was kept in for 12 days. I'm really pleased for you and your family, please let us know how he is getting on and feel free to ask anything. Good luck and kind regards Frank.

BrentS
Posted by

Understandably you worry!

one piece of advice is to preserve with the breathing exercises as lung function is so important to getting back to normal. 

The other thing to remember is that although we are all keen to get out of hospital and home as soon as we can, things will always be more difficult at home than when we are being looked after on the ward. Both for him and you!

Tell him to measure progress by the number of tubes that are being removed. Soon he will be mobile and pushing his own drip stands around!

Counting the days, making every day count.

Brent

jayceeh5
Posted by

Worrying goes with the territory unfortunately, in a strange way I got used to it, never accepted it but found a way to cope.  I can obviously only make suggestions second hand, not like the others who have been through it personally and have much more up to date good advice.  Even though patients are hooked up to every gadget and gizmo (or that’s how it seems) the machines are doing their bit in the recovery process so my husband always felt he had to do his share too. As soon as he was able to he started gentle exercises (the physio wasn’t the best so he did his own thing!) and found it helped, once he was out of bed and in a chair he walked on the spot (still hooked up) as much as he could. The nurses kept offering more pain relief that was always refused, luckily the epidural was very effective.  It’s such an individual thing everyone has a different recovery so a bit of patience and a lot of determination and positivity is a great start, you’ll get there a day at a time.

jayceeh5
Posted by

Just checking to see how you are both getting on.  I hope there has been positive progress and each day is getting a bit easier.  

susannabanana
Posted by

Thanks for checking up on me. I do appreciate it but can get carried away with day to day stuff and don't necessarily reply promptly.

We're doing really well, the operation and intensive care bits were sooooo scary but also calm in a funny way. The surgeon ,doctors and nurses were brilliant. The surgeon still comes daily even on the step down ward now.

Progress is great, breathing exercises, walking and now eating soft food are really paying off.

Didn't really see all this happening a week ago but you are so right to comfort us by saying things do improve.

Long road ahead but doesn't seem quite so daunting now. 

Please don't go away, I'll still need reminding and more useful tips.

susannabanana
jayceeh5
Posted by

Such good news, so pleased. There’s a lot going on, you need to take time for yourself - hard to do but, if someone else is visiting, even a quick coffee in the hospital seems like a treat! Hopefully every day will bring the light at the end of the tunnel a bit closer.

BrentS
Posted by

Glad things are going ok. 

Don’t forget to ask others for help. They will be wanting to help YOU in some way I’m sure. 

Progress will be fairly steady but he shouldn’t try to push it too hard  Napping is a good habit to get into  I still take a 30 minute nap most days, and that’s after 5 years!

Dumping syndrome is a big challenge for most people  it affects different people in different ways  Some find they can’t eat sugary food without getting a sugar crash (hypo) an hour or two later. Others feel awful 30 minutes after eating  

so keep meals small and frequent during the first year, gradually normalising after that  The new normal may well be different to a normal person but is quite ok really  Booze and spicy food are still to be enjoyed!

Counting the days, making every day count.

Brent

susannabanana
Posted by

Appreciate your advice. Of course, you've been right all along but it's still good to hear other people's experience.

We'll take on your advice on progress and it's good to know you're around for any further queries.

Thanks.

susannabanana
Zappaman
Posted by

Susanna, that is great news about your husband, sounds like he is doing really well. Thanks for the update. Just a random piece of information about the breathing exercises I learned from Sad Guru and it definitely helped me. The lungs have lower and upper lobes, if you breathe in with the palms facing up the upper lobes expand more. And if you breathe in with the palms facing down the lower lobes expand more. Good luck and kind regards Frank.

susannabanana
Posted by

Hello I’m off to hospital to suggest these exercises now. Good to know. Thanks

susannabanana
BrentS
Posted by

Hi

You might want to look at the OPA leaflet, Notes for a Carer

i haven’t read it myself Ijust noticed it is one of their publications and I thought of you!

Counting the days, making every day count.

Brent

susannabanana
Posted by

Thanks will do.

susannabanana