Table 5 Summary of advice and reassurance themes and subthemes identified from telephone-based clinical consultations during recovery

Pain

Advice:

Pain management using prescribed analgesics and activity levels

I would think of any medication as a tool there to help you get through something.

Don’t be surprised if you find that you need them a little bit more than others. If you’re going to do a little bit more then you might find you’ll need to take them.

Reassurance:

Some level of pain is expected but can be managed

Surgery can damage the nerve pathways and two weeks afterwards is when they start to mend themselves, so that’s relatively classic that it’s not there immediately after the operation but emerges afterwards.

Other physical symptoms

Advice:

Practical advice relating to food choices, changes in bowel function and ways to manage these

Just give yourself enough breaks and rests

Keep in touch with the dietician, keep an eye on the symptoms. One thing you need to keep in mind is that your stomach at the moment is probably the smallest that it will be because it’s still quite swollen so close to the operation.

Reassurance:

Distinction between expected symptoms and concerning symptoms and how to identify them

Shortness of breath is a representation of how hard you’re working. If people get short of breath when they’re doing something – that’s part of recovery. What we don’t want to see is someone sat in a chair and having an episode of shortness of breath. But if it’s tied to you exerting yourself that’s part of recovery and will improve with time.

Diet and nutrition

Advice:

The initial approach needs to be flexible and adaptive regarding portion size. Certain food groups need to be avoided

We want you to tailor our advice to suit you. If you want to eat in stages, that’s perfectly reasonable. You’ll learn to know when you feel full. You’ll learn to know when you’ve had enough and if you leave it half an hour you can come back to it and enjoy round two.

Reassurance:

Appetite is likely to return and adherence to advice about portion size will improve this

This is about your appetite and you building it up as you want to and getting you enjoying food again rather than looking at food as a medicine.

Managing recovery

Advice:

Practical advice about pacing physical activities and setting goals

Our advice [for fatigue] would be ‘do a little, rest a little’ – and the same for shortness of breath.

Try and be reasonable with your goals but have some goals so at the end of the day you can say ‘yes, I did achieve that, I did make it to the post box and back. A week ago, I was in hospital and now I’m able to walk to the post box and back’

Reassurance:

Fatigue is expected. Recovery often takes longer than expected and varies day to day

It’s quite common for people to get that quite marked increase in fatigue when they go home.

You’re going to have some really good days across those six months and across that year, and there’ll be really good weeks when you think ‘Oh I’m back to normal’ – but then there’ll just be the odd day where you think ‘I have been through a lot, I’m going to take it easy today.