Surviving Oesophageal Cancer

Might need the rolling pin to slow him up instead of cooking with, I am not there yet but understand, I think  my missus will need a rolling pin to slow me down.

Oh dear Li

To say I’m saddened by this news would be an understatement.  I’m so sorry for Gerald and for all of you.  It’s such a shock to have to come to terms with, even though we all know the odds of this happening.  I can empathise with Gerald, as I’m sure all those that have had surgery can, as there have been a few occassions where I’ve had to reassess myself having thought that the cancer had returned.  It definitely seems strange that the oncologist’s attitude seems to be so negative and this should be challenged right away.  It’s not for the patient to decide the treatment protocol, unless he decides against any treatment.  I think that you should request a meeting with the surgeon, the oncologist and the Mac nurse, to discuss treatment options, as there are procedures there that can give Gerald quality of life and hopefully reasonable longevity as well.  This might be a combination of chemoradiotherapy, or radio ablation or something else, but I would certainly demand that meeting very quickly to get the treatment started.

I wish you all the very best and keep in touch.

Love Crystal xx

Hi everyone

Thank you all for your thoughts and responses.  Leisha- it is so true what you said about 'bouncing back'.  Roy had a few days of refusing food and sleeping nearly all day but yesterday he improved a bit, was more alert and asked for 6 sugars on his porridge!!!! so it now seems we have longer with him than we thought last week which is a good thing.

Janet - thinking of you today and hope you have good results from the CT scan.

Li - I am so sorry to hear the news about Gerald after so much youve been through.  It is hard to accept what the doctors say - i didnt believe them when i was told about Roy - it took a while for me to come to terms with it but we were told ' a few months' in April 09 and although Roy is very poorly now he is still here 9 months on so as Crystal says start treatment as soon as possible and i wish you all the best .

Gillx

Hi, Yes Li Crystal is spot on, push for a meeting, I have found the mac nurse good for getting results from doctors as they can communicate directly. I have also found we have to stamp our feet for better treatment. I put this down to funding and too many patients not the medical staff but we have to fight for the best for our loved one or they dont always get it, thats the way it is. I hope you get some action quickly.xx

Hi Grace, yep i can relate to rolling pin scene. Ed is always pushing himself and I get upset. He had a good weekend then started doing stuff outside yesterday. Today he is paying for it, and me! When I point out he was lifting stuff yesterday he has the gall to say his inside is playing up because it has NO chemo this week ! Am I to take it he will be fine when he starts his new cycle of chemo next week? I dont think so. MEN ! xx

Hi Gill, thinking about Roy and hoping he is comfortable, xx                                   

 Hi Janet, I hope you can spend some time with your dad. xx

To Zoe , I think about Joe every day and hope he is gaining strength from your loving care.xx

Hello Steve and Ben, Not heard much from you lately, i hope you are busy doing "men" things,ha ha. Not driving the better halves mad! xx

Hi Crystal, I hope you are rocking today, give your kitten cat my love, xx

To anyone looking in i hope you are having a good day and if not let us know and we will do our best to cheer you up, love leisha xxx

Hi all, 

Li really sorry to hear about Gerald after all he has already been through, it must be a togh time fopr you all.

Mmy dad is in now having a CT scan he is really worried and convinced it has returned somewhere else,  his rationale is 'why would they do a CT scan is they didn't think it had returned ?'  can't answer him at this point but fortunately he has an appointment with his surgeon on Monday so he will get the results then,  so not too long to wait.

Hope everyone else is as well as can be expected, will keep you posted on his progress,

Janet

x

Hi Janet

As your poor dad has had to endure so many endoscopic dilations, it would be normal procedure to offer your dad a CT scan, especially if he’s also complained about any other discomfort or pain that he’s been having since surgery.  I’ll be keeping fingers crossed that all is well and hopefully he won’t have anything to worry about. xx

Hi Gill

It is very difficult for families to see their loved ones suffering like this, but Roy should not have to suffer unmanageable pain as his pain management should be monitored and regulated as the need arises.  If he is in pain then you need to discuss this with his doctors and the Mac nurse.  Has hospice care been mentioned at all?  Hopefully he is as comfortable as they can possibly make him and the air mattress will provide some degree of comfort.  As Leisha so rightly says, and as you’ve no doubt seen for yourself, one day can seem very bad and the next they bounce right back.  I hope you and your girls are well. xx

Thanks Leisha

I’m not rocking exactly lately, more rolling Lol.  I’ve been suffering from the cancer-related fatigue a lot which generally leaves a lot of aches and pains, so I’m also fuzzy with painkillers.  Apart from that, I feel as though I can conquer the world, but not housework unfortunately.   

I’m really keen to go and visit the Van Gogh exhibition in London, so I need to get fit for that.  I hope Ed is doing well and that you’re getting out and about. xx

Hi Grace, it seems Jonathan is doing fantastically well and I’m so pleased.  Hopefully the eating will become easier still, and then you’ll be able to wield that rolling pin creating all sorts of goodies in the kitchen. xx

Hi Zoe, you and Joe are often in my thoughts and I hope that Joe’s eating and dietary issues are improving and that you’ve managed to find the cause of his nausea.  Some of the symptoms you’ve described sound like early dumping syndrome, which is equally common after gastric surgery as after an oesophagectomy. Hopefully, it’s settled down to where he can manage soft, home cooked food, and to eat little and often. xx

Hi Lou, g’day down there, and I hear that Australia Day was a bit of a wash-out.  Of course, we’re very used to rain stops play here as that happens frequently all through summer, not to mention the rest of the year.  Anyway, I hope the weather improves there soon so you can enjoy getting out and about again.   Hope you’re well. xx

Hi Ben, I understand that it’s been slightly damp in NZ too?  I hope you’re doing well and that you and Sharon are enjoying time with grandchildren and time to yourselves.  Haven’t you been on any jaunts recently?  You’re often in my thoughts.  Love and hugs to you and Sharon xx

Steve, I’ve just seen from your post that you are at work, is this the start of a night shift for you, and if so, can’t you order a small Chinese takeaway for your break later?  Now you’ve set me off wanting Chinese.  Hope all is well and take good care. xx

Hi to everyone looking in, hoping this evening is warm and relaxed.

Love Crystal xx 

Hi Crystal,

Thanks for your response, dad had his CT scan yesterday and will get the results on Monday,  we are all really hopeful because at the end of the day he only had a oesophageal stretch a week ago and this time they had a really good look around and also went deeper than ususal and they couldn't see anything un-toward, so fingers crossed that dads problems are caused just through scar tissue.

He appears quite positive about it all today and says he will just deal with whatever comes next !

Hope everyone else is well ?

Janet

x