POST SURGERY PAIN

Hi Jayne

my husband had the operation on 24th April. He is still in some pain where they removed the rib. His wounds have healed perfectly. 
My husband came off the morphine but felt pain so he just went back on it until the pain subsided. He doesn’t take it all now. 
Rob says he feels pain and numbness down his right side. But he has definitely turned a corner and feeling better. Just give it time. Rob is now on his third week of chemotherapy, and boy has he suffered. He had chemotherapy before the operation and was fine. But this time for the first week he couldn’t eat and felt constantly sick. He was heaving all the time. I couldn’t cook anything because the smell made him ill. He starts his second round this Thursday and he’s dreading it. But he is going to preserve with it. He is still on 1000mls a night of tube feeding. We have decided to just keep going with it until chemotherapy ends. 
Rob had 26 nodes out and none were cancerous. The tumour had also shrunk from the first chemo. 
Hope I’ve not missed anything out. Please feel free to ask any questions as Rob is a couple of months ahead of your husband so if I can answer any of your questions I will. 
Rob was in such a rush to get better but I had to keep reminding him he’s had major life saving surgery.  If this helps at all he is now as I’m typing chasing the dog around the garden because the dog has stolen his slipper!!! 
Love Judy 

Hi Judy,

That is great news, it is such a relief to find out that everything is 'normal' and there isn't something going wrong.  Doctors are very keen to wean Alan off the morphine but he really isn't looking forward to it, how long was Rob taking it for?  Alan's surgeon has told him he doesn't need the last 2 flot sessions, which we are grateful for - we think!

Many thanks for the info, I know how worried you were beforehand as I was following your posts, so glad everything worked out for you both.

Hope Rob retrieved his slipper!

Love

Jayne x

Rob thinks he was on the morphine and paracetamol for about two months. He weaned himself off of it during the day but Still needed it at night because sleeping was awful. He was in pain and couldn’t get comfortable so the morphine did help. But he’s not on any media now. 
Everything you are saying sounds normal to us xx

Hi Jayne, 4 weeks post surgery is nothing to be worried about. My surgeon told me that the surgery you go through has the same traumatic effect on the body as a major road traffic injury. So ask your husband if he would expect to be exercising 4 weeks after being in a life threatening traffic accident. I didn't have any pain other than where the major wound on my right side was. I was on dihidrocodeine and paracetamol. I had keyhole surgery on the abdomen area but they still have to cut you up through the diaphragm to connect with your new oesophagus so internally it's about a 12 inch incision. Regarding his right arm,he has had all the muscles sliced through so they could get the ribs out, it's not just a surface cut it will all take time for the internal healing to take place. Your husband will not have any appetite just now so he will need to eat by the clock. Small snacks about 6 times a day high fat content if he can manage it and I would suggest weighing once a week, not daily. I didn't get taken off the overnight feed for about 3 months. He will need to gain weight and keep the weight on before they would stop the overnight feed, and I cut it down to alternative nights. I  could sleep for Britain when I was home ! I was propped up well with pillows and could only sleep on my back and I could nap in my chair during the day. I think perhaps your medical team didn't explain the road to recovery is a long haul and maybe your expectations after 4 weeks were a bit ambitious. I was 57 at the time of the surgery and didn't have any other treatment before or after the surgery. I had been a smoker for 45 years and I had lost about 5 stones in weight. That was in October 2016, I have regained the 5 stones in weight and I am enjoying life. I still get caught out with the food dumping but not as often and a couple of minor internal plumbing problems. Because of this I couldn't return to work as a sub contractor in plant and equipment training. So take a deep breath and relax, be prepared for a slow recovery although some people recover quicker. Good luck and kind regards Frank.

Thanks so much Judy and Frank for your replies.  It's such a relief to know that all Alan's symptoms are 'normal' and it's not sounding like there's anything seriously wrong.  I think because of the covid situation, we were unable to actually sit and discuss our concerns with the surgeon/doctors, which would have made us feel so much better.  Thank goodness for these forums! Especially now whilst we're all in this situation.

Very grateful to you and I hope everyone continues to improve and enjoy life day by day.

Stay safe and well!

Love

Jayne x

Hi Jayne

My husband had his Ivor Lewis surgery on the 19th June, he was in hospital for 9 days. He didn't have a feeding tube, I asked his surgeon if he would have a feeding tube but his surgeon said no unless necessary.

He came home tired, achey and uncomfortable but the following day wanted a walk on the coastpath near our home, very emotional walk for him and me but he walked about half a mile or so. He's 48 and we've always walked the coastpath and he used to run Atleast 3 miles a day before diagnosis, so always been fairly fit. The following day we walked a mile, I worried that he was doing too much but he said he was fine.

By the end of the week he was so tired and for past few days has been more or less sleeping quite a lot. We did go for a short walk today but he struggled. 

He's eaten pureed food since he got home and still has his appetite, he lost it for about 6 months until chemo started then it slowly returned, dietician phoned today and she seems pleased with how his eating is going, he's lost about half a stone since surgery. 

He still has pain around his shoulder and right side he's only having paracetamol at the moment but his cancer nurse said she will phone Thursday and if needed will arrange something stronger, we just aren't sure whats supposed to be normal. One of his chest drain wounds isn't healing so he's off to see the nurse tomorrow at the gp. 

Reading some of the stories I do think Rob is doing really well, I do worry that he's trying to rush things as he's been ill for a year and is desperate to be well again.

I hope all goes well for your husband, look after yourself x

Just to echo what Frank and others have said. 4 weeks is nothing to be concerned about for taking morphine. The pain does subside but it is important to get to the pain before the pain gets to you. After my surgery in 2018 I had 10 surgical wounds that required stitches or staples removal. I had a broken rib that hurt every time I breathed (broken on gaining access during surgery) and a post surgical infection. I was in hospital for 12 days. I found that co-codamol was a more effective analgesic for me than morphine, and co-dydramol (prescribed by my GP) was more effective for me than co-codamol. I did ask for fentanyl to take home from my hospital but they refused. When I was on the fentanyl drip in hospital I was in almost total pain relief, and I remember  when they switched it to morphine I was in a lot of pain. But as I said the pain does subside. I actually found my second cycle of FLOT (post operative) more painful than my surgery! Now I am pain free most of the time and in remission. Things do get better!

Thanks for your replies.  Sounds like your Rob Tink47 maybe done a bit too much, too soon but it's very difficult to stop them if they are feeling well.  I hope he has slowed down a little now, show him this post, it has made my Alan feel a lot better to know that it's just a slower process than we initially thought.  Thanks also for sharing your experience Anon613, Alan hasn't been offered any alternative pain relief yet.  I did telephone his gp for a repeat prescription of the morphine this morning, so we'll see if he actually gets it or not.  We do have some co-codamol we can try if we get no joy with the gp.  So glad that you are mainly pain free and in remission, great news for us all to hear - our time will come!

Love to all

Jayne