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gloomdweller t1_iz21ysg wrote

Make sure your surgeon is doing a lot of pre-surgery teaching. Ours are bad about it and patients often come out of surgery saying “what do you mean I can’t eat or drink” or “I didn’t realize this was such a big surgery.”

Make sure you’re working hard every day even when it feels hard. Too many patients that I see do poorly want to lay in bed and do nothing, get pneumonia and that’s what sends them to the ICU. Make sure you’re getting out of bed to a chair, walking in the hall as soon as you can, make sure you do your incentive spirometer and coughing hard even when it hurts. The patients I see do well are the ones who do all of that and have strong family support. Sadly, nursing and therapists are kept too busy in modern healthcare to push patients and support them as much as they need so if you can have a family member to help you during your recovery that would be a huge asset. I’m not saying anything in the previous comment to be negative, I see a disproportionate amount of cases that go poorly and don’t remember the cases that go well because they’re gone quick and don’t come back.

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47q8AmLjRGfn t1_izfogzx wrote

Great advice. Comments from the medical side tend to be casual during a conversation and it's not stressed enough how important it is to keep moving.

Thankfully, there are some great support websites like smartpatients where others do stress the importance in their experience. I do know they get you out of bed as soon as possible to get moving, whilst plugged into all the machines in ICU.

The info coming from the hospital is not complete. I'm on the third FLOT session tomorrow and I've only just found out that regardless of how much the tumour shrinks they still remove the tissue which was affected and shown in pre chemo pet scans / laprascopy etc. I've spent a long time trying to find extra treatment which will further shrink the tumour with the attitude to minimise surgery. A patient I'm talking to online has finished her FLOT , CT shows no tumour and she was excited to think that means minimal surgery.

Appreciate the advice, thank you.

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