I think everyone has a different experience, some people manage to go to the gym etc. But in my case although I feel OK I burn out of energy if I do anything strenuous after about 15 mins. Slow and steady I can maybe go a couple of hours but I will be burned out, then I need sleep. I think the issue is you can't get the nutrition in as you can't eat as much as before, just little and often, a phrase you will here often I'm sure. My op was August 2020. Has he has chemo already? They may want chemo after surgery too. Its a long process, the surgery is massive but if he takes his time, doesn't get frustrated and allows it to take its course he will be fine. Keeping positive is the main thing, depression can creep up if your not careful.
Hi. I'm sorry to hear you're on this journey. I was initially told by my consultant (in plain language and using his words) "expect a year of crap, but then you'll be cured". The pathway for me is 4 rounds of FLOT chemo, operation, then mopping up chemo (or radiotherapy) to be decided after operation. I've just finished my chemo, and my operation is scheduled for 9 October. The chemo is awful... worst time of my life. I have never felt so ill, exhausted and totally fed up with the other side effects. I only work at home with my PC, typing, but I couldn't even do that! My arms and legs felt like lead weights, and the exhaustion is debilitating. I had my 4th round delayed a week as I was still so fatigued by the 3rd round. However, I am recovering quickly, and back to work next week for a short while pre-op. If your hubby has FLOT chemo it'll be very unlikely he'll manage manual work. I know everyone is different, and he may not suffer so much with chemo side effects, but heavy lifting will surely take its toll as chemo effects are cumulative. Others may disagree, and I really hope your hubby can continue as long as he can with working, but it's a tough old journey he's on, albeit in the bigger scheme of things just a blip of a year if all works out well. Wishing you both all the very best for whatever lies ahead. Just take each day as it comes, and try not to think too far ahead. I was given that advice at the beginning, and it has helped me, especially with so many appointments etc that lie ahead. x
I'm sorry your husband and have to go through this. My journey is similar to that if NickiF. Hi Nicki.
I went through 4 cycles of chemo and each one was worse than the one before in terms of side effects and tiredness. I too work from home, sat at a computer. However, at some point I had to stop working, because I couldn't even get out of bed.
Surgery is planned for the 6 October. Then more chemo. To be honest, now that I know what's going to happen I wish I won't need further chemo. The surgery doesn't frighten me much.
Your husband will have had major surgery. It will take time for him to recover, and he will not be able to lift heavy weights straight after. Wounds need to heal. And, yes, as NickiF put it, expect a year of crap.
Yet were all different and whilst we a walking the same path we react differently and recover at our own pace
You can talk to Macmillan or talk to people at the Oesophageal Patients Association (OPA). They have lots of information.
Take care, the both of you, and take one day at a time
Thanks for posting your experience. Mine is very much like yours and I work from home too. Chemo was horrendous. The last one was postponed too, because I was too ill, like you. My surgery was postponed too, to give me a bit more time to be better.
I will have my surgery on the 6 October. Not far from yours timewise.
Good luck with that, and all the best for what's after
Thank you SeaSurf. Its certainly a tough, short, sharp shock regime isn't it? I think FLOT chemo must be one of the strongest, as friends with different cancers haven't experienced side effects half as bad. As you say, some days you can't even get out of bed. We're getting there though, one day at a time.
Wishing you luck for your operation. Are you having keyhole surgery? The treatment of oesophagal cancer patients seems to vary massively depending on where you live, both with actual treatment and waiting times. I'm being treated at Southampton, and they've been absolutely top class the whole way through, Ive been very lucky.
I've coped by focusing on it being all done and dusted Christmas - a time of year I love, and I have my post op appointment for the day after Boxing Day! Hopefully it'll all be over by then, even the dreaded mopping up chemo. I really am dreading that far more than the op and change of eating habits, much like yourself.
Wavey, hopefully hubby will recover really well from his op, but I'd urge you to speak to and take advice from the team treating him before he goes back to work.
Hi, I just wanted to add, I had 4 rounds of FLOT before surgery then another 4 shortly after. I was warned that FLOT is as hard as it gets, when leaving the hospital I felt like I had been microwaved, straight home to bed then a few hours of really bad stomach upset but by morning I was fine, weak but OK. It is cumulative and my sense of taste went but that's all, I must be the lucky one. The second round after surgery was tougher as i was weaker but again 24 hours and I was ok. Luckily I was furloughed from work for 12 months thanks to a great boss so didn't need to worry about working from home. So, it's a toss of the coin, everyone is different, I hope he's lucky, like me.
Hi So sorry to hear about what your husband is going though ..and you too .It’s challenging to say the least isn’t it ! My husband had his surgery in Dec 22 ..he finished his adjuvant chemo in March 23 ..He’s been a self employed Painter & Decorator for over 40 years ..He’s now 65 and he can’t even think about going back to work at this present time as he simply hasn’t the energy levels to do his job .If he over exerts himself he finds his energy levels drop and it can sometimes trigger a dumping episode ..He was always active …ate well and he’s been slim all his life . I think he’s now had to come to terms with the fact he won’t be returning to work ..He's said he simply doesn’t know how he would factor the little and often eating into a working day as well as coping with the practicalities of his mobility issues with his osteoarthritis! in his leg joints ..He’s 66 in Feb so he will be of retirement age in five months time anyway ..For a man who didn’t plan to retire at 66 I think it’s been another reality check he’s had to deal with .
Everyone is different but I do think age is a factor with recovery ..For my husband the surgery was never an issue ..he recovered slow and steady without complications and has learned over the months to adapt and live with the consequences ..but he found the chemo very difficult and to be honest I don’t think he’s recovered from it yet .
Life changing it certainly is but we’re very thankful for all that has been done for him . regards J
