Surviving Oesophageal Cancer

Hi All

This is my first post on the new site due to technical difficulties, but am glad to say that I am now up and running!

Leisha

I am sad to know Ed has been ill, I hope his condition has improved; it is a shame you had to curtail your holiday. I hope you are not too stressed out over recent events and life returns to some normality very soon.

Take care

Crystal

I hope everything is well with you and your energy levels are retuning. I see you have been extra busy setting up groups and alike, you are a little dynamo aren’t you, however you need to take time to rest and not take on too much and burn yourself out.

Ben

I see you have been dealt another bad hand; Christ does this disease ever let up! I just want to let you and Sharon know that I am thinking of you, and truly hope your medical team can take good control over your pain relief.

Try and stay active to enjoy that wonderful spring weather down under.

Very Best Regards,

To everyone else looking in, I hope this day will be a kind one.

Steve

Hi, good to hear you found your way back Good Year, we missed you! just shows we are all returning, be it slowly.

Ed is home now but the cancer has returned. No details yet but will have proper appointment with Surgeon in post. He should get some chemo and then, i hope, he will be able to eat again. So we are a bit down at the mo but hope to be on the up next week.

Hope you are ok Ben and fighting the next round, champions the lot of you kicking this wretched thing in the teeth. my sister is in Christchurch and loves it, she hopes that is where they will finally settle if imigration allow it. I want her to be happy but if NZ dont want her then at least i would get to hug her again. I could do with that right now. And to think we used to fight tooth and nail as kids, lol.

Hope you are not doing too much crystal, curl up with kitten cat and purr for a bit!

Love to everyone out there, leisha xx

(((((((((Leisha))))))))  I am just so sorry that your worst fears were confirmed, but try to stay calm because any appointment with the surgeon sounds like it could be operable again, and on that thought we have to be positive and keep fingers crossed that surgery might again be a viable solution.  Even if it isn’t, we know that cancers can be controlled for a long time with combined modality treatment and also with chemo alone.  Stay strong Leisha, we are here any time you need support and some encouragement.  It’s good to know that Ed is now at home, and as long as the pain remains under control, he should be alright until his appointment.  My thoughts are with you both. xx

((((Steve)))) welcome back and I’m happy that you’ve returned to the fold.  How are you lately, any sign of putting on weight yet?  Yes, as you’ve noticed I’ve been busy in the Group, so please come by there and join us on the Sofa for tea and nonsense.  xx

((((Ben)))) Are you still haymaking? I am, as we’re enjoying an almost perfect September here in Yorkshire.  It’s been the best month of the entire year and I think that is why my energy levels have crept up.  So tell me Ben, are you celebrating your 70 years this Saturday?  And you know what?  You are definitely going to be celebrating your Golden Wedding next year. Wow Ben, 50 years!!  Please let us know when your treatment starts and we’ll be here for you. xx

To those I know who are looking in, you’re in my thoughts.  To anyone else, have a pleasant afternoon and a peaceful night. xx

Kitty!  I found you!   lol, having real problems with new site.   Couldnt remember your new name and lost all my old emails and posts!   Anyway there you are!

my dad's surgery went okay, he was in high dependancy for two days but sadly last week was taken into intensive care as he has pnuemonia and blod clots.  They assure us this is quite normal but the night he was admitted "doctor doom" more or less told us he didnt think he would make it!  What do you know, more than a week later the auld bugger is still holding on!.....he is a wee fighter.    It is very distressing for us not knowing what to expect, every visit is different, conflicting stories and ups and downs.  I would appreciate your advice (again!) and how you coped after surgery.   Got to rush now to take mum to hospital but will check in tomorrow.

so happy I found you again

Love Netty x

Hi there Crystal, Steve and Liesha, plus any other folks who have found your way here.

I'm gradually finding my way around this site and using quick reply for this as it seems to be the only way to see all the responses as you reply. Seems more laborious than the old site but may be just getting accustomed to it along wtih my usual impatience!

Liesha , my no.1 daughter lives in Cristchurch and she will be here for my 70th this weekend. We also lived inn Chch for 18yrs prior to moving south. It is a very english town just as Dunedin is very scottish except that there are far less people to clog things up!!

We have had word from hospital to say I'm on the semi urgent list for treatment by the oncology team and we are seeing our GP tomorrow to discuss this. He has a good grip on things and main aim at moment is to get on top of the pain, It seems to have escalated in the past week so may have to review the priority. I am on paracetemol, codeine,ticotil, oxycotin and oxynorm. Trying to get the dosage right and stay comprehendable is the tricky bit. Can make it through the day ok but breakthrough pain in the night is horrendous and wakes me up every 2-3 hrs and I have to leave the marital bed and come downstairs as I keep waking Sharon up with my incoherent burbling and  gobbledegook -  hence this note at 5.55am.

Apart from that I'm a box of fluffy ducks - putting aside the pain this is the best I've been since the op.The codiene and oxycontin is a wonderful cure for dumping!! Am having to eat 2 kiwifruit a day to keep things moving in the plumbing dept. now!!

Anyway we are in very good spirits and making the most of our wonderful spring weather. Daylight saving starts here this sunday so summer is just round the corner. Well the happy pills are kicking in so may catch a few zzzzzzz's

Take care everyone.

Cheers. Ben and Sharon.     

Oh, dear Ben, you poor things, I feel so sorry that your pain has increased like this, and it must be bad to disrupt your sleep.  You must talk about this with your GP and certainly with your oncologist because you shouldn’t have to suffer like that.  They can give you stronger meds, or even patches, so do mention it to the medics.  You’ve got quite a cocktail of medication there, and I know and agree with you that codeine, or co-codamol are great cures for dumping.  Unfortunately, they are also addictive, so although my doctor has prescribed them to me for various aches and pains, I tend only to take a couple of tablets a week.  I think the codeine with the oxycontin must be quite a combination.  Enjoy the warm weather with Sharon and I’m so glad that you’re in good spirits. Let us know what your GP says Ben. xx 

Hi Netty

I’m so glad you found me again.  I don’t have an Inbox of mail anymore, now it’s just a long list of almost a thousand messages, both In and Sent items all mingled together with all the same date, so it’s impossible for me to find anyone now.  I always keep the same photo so that people will be able to find me. 

I’m so sorry that your dad ended up back in the icu.  Unfortunately, although quite rare, complications can arise, especially chest infections.  This is because the nature of the surgery involves collapsing a lung and the length of surgery increases the risk.  It’s one of the reasons why, especially after the Ivor Lewis procedure, the physios insist on you getting up and walking about as soon as possible, and doing those painful breathing exercises.  Usually, most people do get over this but it seems to take a long time.  One chap I know spent 12 weeks in hospital, but then he did have every kind of complication, including an anastomotic leak, (the surgical join).  However, with very skilful nursing, he too recovered.  It varies of course for everyone and lots of people have less serious problems and some, like lucky me, had none at all.  One thing is sure and that is your dad will have the utmost attention and they will be scrutinising every single development very closely and acting accordingly.  Your dad sounds like a strong man, so I hope that he will pull through.  If you want to learn more about other people’s experiences you might want to look in the Gullet (oesophageal) group where you might post questions and hopefully receive more answers.  Anyway, keep us posted Netty, let us know how he was this evening and we’re always here for you, Love Crystal xx

Hi Crystal,

Thanks for your concern. We saw our GP 24/11 and he has upped the doseage again to 60mg oxycontin twice daily and 10mg oxynorm whenever needed. (it is 1.45am as I write this and have just taken 10mg oxynorm)  I thought the doseage I was on prior to this was high but my GP has treated 2 other OS patients  and has been more informative than any of the hospital staff. I have always been concerned about addiction and he continues to reassure me that as long as I'm taking it for pain I wont 'get addicted. The only benefit an addict gets is the "high", whereas a pain sufferer's benefit is pain relief. Definitely need to come off it slowly though  --  that's the part I'm looking forward to!! Anyway, received appointment for CT scan for 8th august so things are marching along.   

The tribe start arriving today so may be out of touch for a while until the party is over. Did I tell you we will be seeing our great grandson for the first time? Looking forward to that.

Cheers Ben. 

Hi Ben, I'm happy that your doctor has increased the dosage of the painkillers, and of course you are right that pain relief is paramount and to be considered above the possibility of addiction.  Anyway, now to the Party.  If you won't be online for a while I understand, as naturally you will be spending lots of time with your family celebrating 70 happy and great years.  It will be wonderful for you both to see your great grandson and I really hope that you can post some photos of him here in your profile when you come back to join us. 

I want to take this opportunity Ben to Wish You a Very Happy 70th Birthday and to wish you Many Happy Returns of this Day.  I send you and Sharon hugs and kisses and say have a lovely time surrounded by your family and friends.  Love and All Best Wishes, Crystal

A little something I made earlier.

Hi Crystal,

You are too much!!!!! love the birthday cake and thank you so much for the birthday greetings this has made my day. Will definitely have some pics taken - planning to have a 4 generation shot so remind me again when I'm back on air.  4.22am here  and just had another lot of happy pills hoping for journey to zzzzzz land shortly.

Goodnight. Ben.