We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

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.

Surgery 17th January

DRM
Posted by

So, 6 days post op and I'm really struggling.

I was doing so, so well. All docs were extremely happy with my progress and said that I was exceeding expectations.

Then my epidural was taken out yesterday and everything changed. I was in a world of pain and have been ever since. The oral pain relief so far hasn't touched the sides and they are trying to work out the best combination for me.

The worst thing though is my right shoulder blade which felt yesterday like it popped and is now really painful and just doesn't feel 'right' at all (like it's about to pop again). The doctor examined it this morning and said he believed it was related to the chest drain so that needed to come out, which it was due to do today anyway. 

Chest drain is now out and I've just been resting since but my gut tells me there is no change in my shoulder. Does anyone have any idea what this problem could be? The physio this morning said possible emphysema and would come back to have a listen to my chest  but I haven't seen her since. The pain/discomfort is right where my surgical wound is. The doc said it was swollen a little but no haematoma.

Thanks

Deb x

BrentS
Posted by

Deb

So sorry to hear that you are having a rough time of it.

My epidural ‘slipped’ after a day or two late one evening and they soon knocked me out with pain meds till it was sorted the next day, so I have some idea of the pain you are suffering, even if I didn’t suffer for very long.

As I understand it the shoulder pain is referred pain from widening of the hole in the diaphragm to allow the new “oesophagus” to be pulled through into the chest. I do remember that nothing much touched it but I don’t remember being so bad to cause me distress.

I do hope they sort you out with some effective pain med very soon and you get back to recovering in peace.

Counting the days, making every day count.

Brent

DRM
Posted by

Thanks Brent

I don't think the shoulder problem is the referred pain from the diaphragm as I had that straight from surgery and also after my laparoscopy and it was completely different. That was just pain, whereas this is pain and something feels out of place/not right. This is also in a totally different area of the shoulder. Unless it presents itself in different ways? 

Luv Chox
Posted by

Hi Deb,

My husband also suffered with shoulder pain after op, his was performed early Oct last year, this was partly due to broken ribs, (this is part of the operation itself) I think it is so the surgeon can access oesophagus. He said gently rocking his shoulder and small circular movements helped to keep it moving, but in all honesty you are 6 days post op, take it slowly. Another thing which may help is a TENS machine, they will have these available so it could be worth a try, I invested in one whilst my husband was still in hospital so it was ready for him when he got home and he said it helped.  Good luck XX

The smallest act of kindness is worth more than the greatest intention
DRM
Posted by

Thanks Luv Chox

You may have hit the nail on the head there. Since I last posted the doctors have been round again and I spoke to a different doctor from this morning who said exactly what you have said. 

I hadn't thought for a second that broken ribs would affect the shoulder like this. 

Bit worrying though that the doctor this morning told me it was the drain that was causing the issue! That said, my overall pain everywhere has reduced slightly since the drain came out, so is now more manageable

Not sure if I'm still going home tomorrow, we will see! 

Thanks

Deb x

Luv Chox
Posted by

Hi Deb 

That's good news, but don't rush to get home too soon, the hospital has the best pain meds so make sure you can manage with only oral pain relief, also make sure you have enough to get you through the first week or so,  and don't make the mistake of thinking once you have completed the course given to you by hospital that is it, because we did, big mistake, once you get home it is up to you to contact GP who will take over future 'scripts. All the best X

The smallest act of kindness is worth more than the greatest intention
Zappaman
Posted by

Hi Deb, I'm sorry to hear about your suffering. I don't really remember much about the first few days. I only know what I was told by my wife, that when they brought me round from surgery they had difficulty controlling my heart rate. It was then that they discovered that the epidural wasn't working. I don't know when they fitted a canula but I was getting pain relief pumped in, although at some point this was leaking onto the floor and my wife told a nurse. They sorted that out and I didn't have any major pain issues after that until I was moved out of the hdu to a normal ward. They clamped the tubes and turned the pump off so they could take it back to their ward. The nurse in the new ward forgot to open the clamps up and it was about an hour later I said I was in pain she checked the equipment and sorted it. I had no problems after that and was fairly pain free. I had the most relief once the tube was removed from my nose. Take your time and don't rush home. Kind regards Frank.

DRM
Posted by

Well I'm not rushing home now (not that I was anyway, I've been purely guided by the hospital). 

Was meant to be getting discharged today but no. I had an xray last night and it has shown fluid on my left lung, which is not the one they did anything with. So they are putting a drain in it today to get rid of the fluid. Looking at going home early next week now

Not sure what to think or whether to be worried. They just threw it at me then walked off and left me sitting there feeling baffled.

Deb xx

 

George-Mildred
Posted by

Hi Deb

how are you feeling now? 
Judy x

DRM
Posted by

Hi Judy

Thanks for asking.

I'm still in hospital. They drained the fluid off my lung and that's fine now. Apparently the lung that they dont do anything to in the surgery can sometimes get bruised which causes swelling and fluid.

The reason I'm not home yet is that my food isn't going through properly. They did an xray and saw that what I was eating  (soft food) was building up inside me and not going anywhere. So I've had my stomach drained so it's all empty and am back to nil by mouth and being tube fed. Waiting to have an xray after swallowing some dye so they can see what's happening.

Will have to wait and see!

Thanks

Deb x

George-Mildred
Posted by

Hi Deb 

im sorry you are feeling poorly. I hope this gets sorted out promptly so you can get back home and make a full recovery. Keep us updated. Thinking about you. 
Judy x

Luv Chox
Posted by

Hi Deb

Hope the xrays and tests have gone smoothly today and you are now more comfortable, I know my husband suffered terribly with constipation following his operation, mainly due to the opioids given for pain relief, in fact even the enema they gave him didn't seem to help much, getting out of bed and walking up and down the hospital corridors got things moving eventually and staying hydrated of course.

Best wishes X

The smallest act of kindness is worth more than the greatest intention
Zappaman
Posted by

Hi Deb, sorry to hear that things have not went smoothly for you since the surgery. Hopefully they will see what is causing the problem and get you sorted out. I was in for 12 days and glad to get home. So try to keep your spirits up and remember we are all rooting for you. Good luck and kind regards Frank.

DRM
Posted by

Thanks for the replies! 

I had my x-ray with contrast yesterday and the doctors/surgeon were happy with it and said that everything was going through smoothly. 

So on that basis I'm off home tomorrow! That will be day 16.

Hospitals aren't the best of places to be for any period of time but the positive side of being in for so long is that I'm now an awful lot stronger than I was a week ago when they were initially looking to discharge me. For that I am grateful as I feel a lot more confident in going home now. 

I've been doing lots of walking around the ward and up and down corridors to build my strength up and improve my breathing so hopefully this will have helped.

Here's looking to going home tomorrow!!!

Deb x

BrentS
Posted by

That’s brilliant news Deb. I hope all your complications are behind you and your transition to home life goes well. 
You are right in that hospitals are not good places to spend too long in, but going home before you are ready is worse!

Just the small matter of recovery now. One day at a time but measure your progress weekly. Listen to your body and find out what works for you as everybody’s experience is different.

Counting the days, making every day count.

Brent