Surviving Oesophageal Cancer

Thats good news about Ed at least he wont be living at hospital!!only having to go every three weeks thats brill.  Roy stats are improving but he hasnt got much strength and hes hardly eating but fingers crossed he will be home soon.  Take care everyonex

Gidday Leisha,

Not quite sunbathing down under just yet but temperatures are now in the teens and should be over 20 in a week or so. All the best with Ed's chemo - everyone is different but in general there is a lot of bad press about it and with a good oncologist most side effects can be kept under control.  I'm still awaiting appointment for my radiation treatments. Meantime have had further pain management adjustments and am on methadone along with oxycontin/norm - now on 10mg methadone and about 400mg oxy daily(plus other odds and sods)  and I'm pretty good during the day but still can"t get through the night without at least 2 very noisy wakeups!! Anyone else have any experience in this area?  Apart from the pain I'm great so I'm hoping the radiation will sort this out.

To Steve and Crystal gidday to you too and I trust life is good for you.

Take care All the best from Ben. 

Hi Ben, good to hear from you. how does the radiation go then, is it  a course of lots of visits or one big blast? Do you have to travel far as I guess you will be lucky to have a centre near you in that big country of yours, only joking! Still we are lucky in that our unit is litterally 5 mins away by car so at least we dont have tiring journeys to add to everything else. Take care and i hope you dont have to wait too long. xx

Hi gg, I sympathise with the not eating situation. When Ed was in hospital one Doc said that Ed could only go home when he was eating properly. I pointed out Ed would never eat properly in hospital as

a) food only offerred 3 times a day when he needs at least 5 meals

b) Ed has no stomach so little and often

c) can only eat certain things, non of which are on the menu

d) eats whenever he feels like it, NOT at set times

Doc would have non of it and insisted Ed stay put so I got the surgeon who really understood that we had coped at home for nearly 2 years and Ed had done so well. He signed Ed out of hospital within 2 hours and i got on with my soups and fish that build him up. Hospital dont offer a liquidised diet  either so if they are not actually giving medical treatment prhaps Roy will be better off with you at home. I shall be thinking of you and hope Roy picks up soon, (((((((((((((((((((((((((hug)))))))))))))))))))))))) love leisha xx

Hi Leisha,

Planned radiation is 5 daily treatments with a break then 5 more. Do you have any experience with radiation? We have a 20 minute drive to the hospital and the road winds it's way around the waterfront  only metres from the waters edge - truly picturesque - it is the same route taken by the tourists on their way to the albatross and penguin colonies. It's hell living in paradise!! Check out Portobello Otago peninsular NZ on google earth.

Cheers Ben.

Sorry make that Portobello Road Dunedin Otago nz

hi Ben, will be looking at that. No personal experience with radiation but brother in law had it for his inoperable lung cancer. His was one blast! He said it just made him sleep non stop and he is just starting o feel more normal after a month. He is very cold though. Still yours will be different and the weather will be on your side so i hope you get good results quickly. when do you start it/Let us all know how you are getting on. We like to hear from paradise then at least we can dream!

My sister is in wellington now waiting to see how their applications to stay are going onlove leisha xxxxx

Hi everyone hope all is ok with you all.  Just a quick update - Roy is now out of hospital but still not brill.  Although his heartrate and temperature are now normal and he is on antibiotics what i thought was odd was in the hospital they said basically it was up to him if he wanted to go home or not which confused me - perhaps they think he is going to be back in soon???but at least he is home for the time being but he is just so weak.

Hi Everyone, It seems as though I haven’t posted for ages, but with all the events that have been happening lately I’ve been struggling with the fatigue, which sometimes feels like an illness in itself as it seems to penetrate to cell level, and I literally get sick with tiredness.  Today seems to be a good day so I always grab these days and happily run with them.

Ben, I always think about you and I knew you’d be making hay and taking every opportunity to get out and about in that lovely weather and countryside.  I hope that you and Sharon are really having a wonderful time so that you can conjure up those images throughout impending treatment, and plan similar trips out in the near future.  All I know about radiotherapy is by speaking to others, and whilst they say it’s painless, although some do get some mild, local irritation, they all say they feel very tired and have to sleep a lot.  Do you have a start date yet?  Take care Ben, we’re all here for you.  Love to you and Sharon xx

Leisha, I always admire your fighting spirit and lovely humour, essential to my mind for getting on with the things that we have to.  I’m sure that Ed is doing well under your care and I hope he’s feeling better today.  It sounds as though the chemo regime might be the ECX, especially as he has one infusion in hospital and then has the rest at home.  Thanks for your messages Leisha, and as I wasn’t notified about posts and messages I’ve got a little bit behind and have stacks sitting there.  Big hugs to you and Ed. (((((((((((Leisha & Ed)))))))))) xx

Hi gg

I’m glad to hear that Roy is at home at last.  I think the hospital probably meant that because Roy has been very poorly, it depends upon how he feels now as to whether he wants to go home or not.  In other words, they were saying it’s his choice.  I know how worried you are and we tend to read things into remarks that make us worry even more.  Take care gg and I hope Roy has a pain-free and reasonable day today. xx

Hi Steve, Thanks for your support and I hope all is well with you.  I know that you too have been tired a lot so I hope that you can muster some energy this weekend and use it to have some quality time with your family or just having some much-needed ‘me’ time.  I’ve just read your latest post on Demon, Mystical day, and think it’s beautiful.  It resonates with me and is very evocative of these autumn days where the sun competes with the moon.  Lovely Steve. xx

To Everyone looking in I hope today is as good as it can be and that you have something happy lined up for the weekend.

Love Crystal xx

Hi Crystal

Lovely to hear from you, I have not been on here for ages as my dad has not been too good he has had a futher 4 operations since his big one in July consequently he is very down, he thought he would be back at work by now but some problem always seems to pop up.  He was advised that he was going to be made redundant last week so that has not helped, but hopefully things will start to improve for him soon.

Hope things get better for you Crystal, and hope everyone else is as well as can be.

Janet

x

Hi Janet

It’s great to hear from you too and although I haven’t posted for a while, that doesn’t mean to say I haven’t thought about you.  I’m really sorry to hear that your dad has had further surgery, what on earth has happened that he needed to have four operations?  Was it infections, leakage or dilation or something else?  Please send him my very best regards and I send him healing thoughts. 

Whilst it’s a blow to be made redundant, I doubt that your dad would have been fit enough to return to work yet even had his recovery gone to plan.  The surgery, as you know, really does take many months to recover from and there are nearly always setbacks amidst the recovery progress.  I hope he can treat this redundancy in the light that I see it, and that is that he should use the opportunity to get better, rest and build up his strength ready for the next chapter in his life.  There will be other things he can do once he’s fit enough, and his health is the important issue.  I hope you are well Janet.  Take care and keep in touch.

Love Crystal xx

Good night to All and Good morning to Ben and Sharon in NZ.