So having seen the consultant today and gone through all the scary info regarding surgery, it’s been bought forward to the 17th Jan - ong that’s a week on Friday! Feeling anxious and afraid of what’s in store, not just the huge op but the recovery and finding the new normal.
scary times a head I feel x
Hi Sarah. I just want to reiterate what everyone has said on here. Your medical team will have done this loads of time before and because it’s such a large operation I feel you are looked after from every angle. I will never be able to thank the medical personnel who were part of my care, treatment and surgery enough. They were marvellous and will always be in my heart. I was a bit like Dibden Doll, I really wanted the operation done and dusted. I had my operation (open 3-way, cuts through my abdomen, right hand side back and rib area, and my neck), on the 31st October 2023. I’m pleased to say recovery has been good and I honestly wake up every morning with a happy heart. Wishing you all the best. Julie
Hi Julie
thank you so much for your positive reply - it is inspirational to know you are doing so well. How much has your life returned to normal over a year after your surgery?
I know I will be so well looked after by everyone involved and my family too, it’s just such a major op isn’t it.
wishing you the very best too and may you always smile
Sarah. Xx
god these posts are so helpful, i go in 7.30 tomorrow for left thoracoabdominal esophagectomy, so a new scar to out do the right masectomy one. still feel numb, got meds together, dressing gown and slippers, (think i can only bring in basics for the op?) specialist nurse anne called this morning to check in, just burst into tears, not because of the op, or the cancer, just the home situation which has gone back to new normal.
tried to explain that we should have been doing stuff before tomorrow, making some lovely memories before tomorrow, 99% of people on here have been making the most of every day, when i tried to explain this, just didnt go down well. so thank you for all your support and wise and kind words on here, think i will need them more than ever. maybe the sight of me with all the tubes etc after surgery may make a difference to husband.
but for now trying to get my mind set right, hence on this forum grabbing hope, support and hugs. would love to report back that op went fine, home is now fine, but baby steps right.
love to you all and CB cant thank you enought for your help and honest feedback, going in with eyes wide open has really helped. hope the ties are good on the back of those hospital gowns in the churchill!!
love julesxx
I know we are all different in our responses and recovery, but for me I didn’t really have any set backs (apart from a possible food poisoning episode which landed me back in hospital in April, but to be honest I don’t know what it was exactly). I just made a slow and gradual recovery. Initially, I came home with a food pump and thankfully I was able to stop it after about 3 weeks and rely on normal food. Obviously at the very beginning I was very careful with what I ate, only eating foods that were very soft and mashable. I think that probably lasted for a month at the most. I was careful with toast in the early days, making sure I’d chewed really well before swallowing small bites. I do remember visiting relatives about 10 weeks after the operation and going out for a meal; I chose Salmon, noodles and some stir fried veg, and then later in the evening I also had some fish and chips!
I think the constant thing that still happens is that I get full quite quickly, and I doubt this will change, as the food gets backed up until it is passed through the re-worked digestive system; it makes me feel like I can’t swallow anymore. However, I was never a big eater and I think it must be so much more difficult for a man to adapt to this operation, having to get used to smaller amounts of food, yet not dropping too much in weight.
After the operation, I started walking as soon as I could, feeling breathless to begin with, but I don’t remember it lasting too long. I just listened to my body. I went to Copenhagen in the Feb (to see my son and his family) and then went to Bologna in the March for my birthday, so for me I was lucky that I felt fit enough to do such things. However, being retired (I was 63 when I had the operation) must have helped an awful lot as I had nothing to worry about, other than getting better.
I hope this gives you a bit of insight into how things might be Sarah and if you ever want to contact me directly to ask anything you feel uncomfortable with posting, please do not hesitate.
I wish you well and will be thinking of you. Julie
Ah Julie
thanks so much for all of that really helpful information - it sounds like just how I will hopefully be, although not the food poisoning lol
I shall be celebrating my 55th Birthday in hospital recovering from this op this year, the consultant said we will have a party, and my first thought was well it’s not going to be much of a party with no food or drink lol
also thank you for saying I could get in touch with you personally- that means a lot and I may well take you up on that after surgery
Thanks again
bestest wishes
Sarah xx
Hope all goes well for hubby will think of him while I’m plugged in at BHOC. xx
Hi
I just wanted to wish you all the best. I had my op 2 years ago on 11th Jan. I remember the incredible anxiety I felt but also the wish to just have the tumour out of my body. Like others have said - the size and commitment of the medical team was humbling. I still marvel at how serious the op is and really how quickly I recovered even with some minor complications. Just after the surgery I was struggling because I don't respond well to some of the painkillers so they made me quite drowsy. I made a choice that I would live and not just survive. There is such power in making a choice.
Practically I'd suggest headphones, phone charger and downloaded entertainment - hospitals are loud and boring
Yes 2 years on there are some adjustments but fairly minor really- I sleep on a low emwedge pillow, I eat dinner early and my body doesn't tolerate some foods as well (I think that was always true but the surgery just enhanced it).
Sx
Thank you and all the best to you too. It’s going to be an icy drive for us down to Taunton
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