Surviving Oesophageal Cancer

Hi everyone

Grace - Im so pleased Jonathan is managing to eat some foods and i hope he continues to improve.

Roy seemed to be doing fine and had the drain removed yesterday but i have just phoned the hospital and he seems poorly this morning with breathlessness and coughing so back on the rollercoaster!!!  Thank you all for your support - sometimes it just helps reading others experiences.

Gill x

Thanks for all your thoughts and good wishes.  The danger is that he tries to do too much.  He is so frustrated by being so weak, that as soon as he has a little more energy he is doing the chores.  He is paying for it today.  He is 5' 9" and now just over seven stone.  Let's hope that the weight, and the energy levels, soon start rising. 

A particular thanks to Marianne.  I think of you both often.  I hope you had a lovely day at Center Park.  Take care.  

Steve - I had no idea that you had been through so much.  I think I understand what you mean on being able to focus on your own fight with your Demon.  Thank you again for your kind and very beautiful words.

Gill - I hope that things improve for Roy today.  

Leisha - I hate shopping too!

Thanks for the candle, Crystal.    Here's lots of hope to you all. 

Hi Grace

I can perfectly understand Jonathan wanting to be up and about doing chores and so forth, but moderation is the key, otherwise he will exhaust himself.  I’ve no doubt you’re telling him that and that he’s just doing it regardless Lol.  Did you manage to establish any sort of menu yet, or is it still pretty much trial and error?  I remember also, that as soon as I could swallow again, oven chips strangely enough went down very easily, as did baked potatoes without the skins.  Also, I lived on quiche for quite a time which I made myself, as well as poached pears, weetabix and hot milk and lots of soft things in tins or jars such as asparagus, tomatoes, stewed steak and so on.  Once Jonathan is able to eat these things he will hopefully progress to a more varied and healthy diet in time. xx

Hi Crystal

Yes,  I have tried to tell him not to do too much, and yes, he is ignoring me!   The diet is still trial and error  but the idea of a quiche appealed.  I will hunt out the rolling pin.  I am hoping that we will be able to get him back on some really healthy things soon!  

Many thanks from us both - you have been so very helpful. 

xxx

Hi Crystal, Grace and Leisha,

Thank you for your replies and advice it is really appreciated and I will check everything out when I've posted this.  Just when I think I've worked out what is causing Joes problems he seems to have another episode for no apparent reason.  Joes definitely not tolerating lactose though he can drink (but does not like) soya milk and is managing to drink Maxijul 500 .  Homemade soup, chicken, mince, and most starchy foods dont appear to upset his bowel but he suffers wind and 'churning' straight after eating and drinking regardless of what he has. He's currently taking cyclizine tds, buscopan tds, oramorph prn, diazepam nocte, and regular paracetamol but we are trying not to use cyclizine or oramorph unless absolutely necessary because they just knock him out which makes it harder to get anything in to him.  We will soldier on, it is early days I know.  Wishing you all the very best, 

Zoe xxx

Hi Zoe, I can relate to what you say about" no apparent reason"" . I think episodes happen just because of the major trauma the body has sufffered and it has a long recovery to make. The drugs can hinder the food system as there is no stomach to help digest anything so it really is a long road to settling into a routine which is never 100%. Anything homemade is great as you know what is in it with no additives or rubbish. I hope things continue to go well, love leisha xxx 

Hello everyone  - i hope everyone is doing good.  Just to update - Roy isnt eating or drinking very much at all and is very sleepy.  He has deteriorated a little since being admitted but has been the same for the past two days.  He is now on an air mattress which helps.  Its heartbreaking to see another human being go through this and sometimes i think it is worse for loved ones to see but he keeps fighting it.

Take care

Gillxx

Hi Gill, yes watching our loved one fight tears us in two. We dont want to loose them yet we dont want them to suffer any more. Still when I thought " this is the beginning of the end" Ed bounced back. I pray you get more time together but without the pain for Roy. I refused to leave Ed when he was in hospital and they let me stay with him during the day anyway. I think it helped him relax and get some quality rest. Hospital visiting times are not enough for cancer patients with such deep ongoing suffering. I hope your hospital staff are sympathetic for you. Thinking of you, love leisha xxx (((((((((((((((((((((((((((((h)))))))))))))))))))))))))))

Hi Gill

Really sorry to read about Roy, it must be a very hard time for you and the girls to see him like this,  I will pray for you all,  he has been through so much and is still fighting he must be a very strong man !. 

To everyone else hope you are well, and staying positive x

Quick update on my dad, he went in for his either 7th or 8th oespohageal stretch on Tuesday, again not made any difference, what puzzles me about it all is, back in July when he had his op the surgeon made his new oesophagus from dads stomach so obviously he made it too narrow ?, whenever I suggest this to the surgeon or the nurses the just say this is not the case ?  Anyway he is still here and aseems to be getting better very slowly,  although he still chokes quite a bit on food.  His next big hurdle is his CT scan on 26th Jan, will keep you posted.

stay strong

Janet

hi all,

ive not posted in a while gerald had his ct scan and its not good news its in his stomach and possibly one node but they are not sure they have said he has a year left they have let him deside his treatment. which is strange and the oncologist was smiling as he gave gerald the news and he dont seem confedent and im not just picking it just seems od as dr parry gerald sergeon said he would throw every thing they can at it regardless of how bad it was as any one got any advice?