I have 13xm Barrets diagnosed some 8 years ago , my specialist hit me with some options last week that scared the life out of me. RFA , cryo and finally an oesophagectomy to remove half my oesophagus. The oesophagectomy scares me somewhat as YEP I googled it and the prognosis doesn’t look great . Can anyone give me some advice either way please ?
G W
Hi Geo
I was just thinking about you and your caravan and whether you’ve been able to use it since having completed your treatment? I’m only asking this as I have a motor home that I really like but am wondering if I will be able to enjoy using it post OPP or is this me being to adventurous
I realise I shouldn’t be thinking about going away post op but I have to occupy my mind with something other than oesophageal cancer or I’ll go off my trolley
I hope your are well
Best wishes
Paly
Hi Big Al
I am lying here at this ungodly time in the morning contemplating the next chapter in the treatment program ( Oesophagectomy) at the beginning of May
I was going older posts and remembered you were contemplating giving it all up and then decided to go for it, so how is it going are you coping with the Chemotherapy?
I look forward to hearing from you
Best wishes
Paly
Hi Paly
Well, completed Cycle 1 and started Cycle 2 yesterday so far so good. First two weeks were an eye opener, 7 hours siting in the chemo chair along with 6 others at various stages. After much chemo belly and then getting a workable routine with all the anti this and that tablets, and of course regular drinks to get my 2 litre per day, thing not too bad. Best of all are the Steroid tablets supplied by the hospital to take the before the start of cycle 2, spent the day before treatment, in the garden Hi Hi.
BEST WISHES Big Al
Hi Paly,
I had my operation on 29th Feb and was discharged from hospital on 15th March. On the 22nd my wife packed up the car with all my medications, JEJ feeding supplies, etc. and we headed away to our holiday home for a few days together. The 3hr journey was tough (especially with all the potholes on the roads these days) but worth it just to get away and spend some time together just the two of us. And I definitely felt better for it. So don’t give up on the idea of getting away in your motorhome if that’s something that makes you happy. There is a psychological as well as physical aspect to your recovery. Good luck with yours
Hi Cool Blue
Glad you seem to have got through the surgery ok so far. That is my biggest worry when the time comes. Having been told how they will remove a large amount of food pipe and stretch what’s left of my stomach up to remaining food pipe, having to collapse one lung in the process etc. I have been told I will be in Intensive Care Ward for maybe 6 weeks. What tubes and things have you now got for feeding etc during the recovery stage at home?
Best regards, Big Al
Hi Big Al,
I would be very surprised if you were in ICU for as long as 6weeks. 3 or 4 days seems more common. I had post-surgical complications but was still only there for 7 days followed by another week on the ward. At the moment I just have a JEJ feeding tube which goes straight into my duodenum (where the stomach enters the small intestine). I connect myself to my feeding pump each night. Initially this was for 1800kcal over 12hrs, then 1500kcsl over 10hrs and now cut down to 750kcal over 5hrs so, at the moment, I’m trying running it from 10pm until 3am to see how that goes. If I can manage to increase my oral intake and maintain my weight, then the next step will be to reduce it down to zero and then have it removed altogether. Having started off with about 8 drips and drains post surgery, that’ll be the final one gone and I’m looking forward to that (before they put my PICC line back in for my post-op chemo! Not looking forward to that at all. The surgery is undoubtedly very major and the road to recovery is long and slow but, if I hadn’t gone down this path, I know that I would be dead or dying by now. Not much of a choice, huh? Two of my grandkids were down to visit today and I want to be around for them growing up. It’s tough and I have days when I feel a bit down and frustrated with what I see as my lack of improvement (my wife tells me different) but I know I’ll get through this in the end and hopefully have many more years ahead of me.
Hi Big Al
I am glad to see your coping with the chemotherapy as I mentioned before my worst cycle was the last one (fourth) diarrhoea nausea neuropathy and fatigue and it’s taken nearly 3 weeks to get back to a normal ish fitness level
I’m still very apprehensive about the forthcoming surgery but prior to that I’ve got a liver shrinking diet to survive (3 pints of semi skimmed milk and 300 grams of low fat yoghurt per day) for two weeks ,it’s a good job I like milk and then I have to have a small filter put in an artery in my back a couple of days before the OPP to filter out any blood clots that may occur as I had a DVT in January last year
I find it’s the waiting around that gets to me the not knowing what’s going on from the full on four cycles of chemotherapy and recovery to nothing just almost clock watching
I hope you manage to cope with the rest of your treatment
I’ll keep in touch
Best wishes
Pally
Hi Pally not been too good this last month. Completed third cycle and things went bad. All the chemo belly stuff and I ended up in A&E due to an infection. Was in hospital for 18 days, only released once social care at home organised. Got bed downstairs etc and can access toilet. Doctor cancelled Cycle 4, PICC line removed so now just waiting for fitness test. Now have chest infection treatment via antibiotics tablets so still a lot of waiting to see how I improve. I will keep updating when things get more interesting.
Best wishes Big Al
Hi Paly
Well, I had my pre-op fitness test on 4th July, having now managed to get from just over 9 stone, when I came out of Hospital, now back up to nearly 11 stone, but of course I “failed” the test. Surgery planned for 18th July was confirmed by the Consultant as postponed, so I now have 5 weeks to get fit again. Managed to get a second hand exercise bike and been referred for keep fit classes so hopefully I will get my fitness back up. Having lots of high calorie drinks and eating plenty of oven chips while I can! Not sure how much extra walking I can manage, but I’ll have to work hard to be ready by the next fitness test on 19th August.
Best wishes Big Al
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