Surviving Oesophageal Cancer

Hi leisha my husband Tom is half way through his 6 courses of chemo and is doing really well with no side effectsat all apart from hair loss .I will keep my fingrs crossed for your Ed  that he has as easy a time as possible.I am new to this site but will be keeping a look out to see how Ed is getting on .

love mariannexx

Hi Leisha im glad Ed has been quite upbeat and chatty and getting on ok with the chemo and Marianne i know we have never chatted before but im glad your husband is doing so well.  I dont seem to come on here and chat very often because i feel as if i have nothing positive to say but i am always on here reading and getting comfort from others stories.  It was my daughters 18th birthday yesterday and Roy got a friend to drive him over to see her. She was nervous due to getting upset and as he got out of the car she went to the bottom of the drive and threw her arms round him whilst my youngest daughter just stood and watched.  They both cried which was sad to see on her birthday but it was also lovely that he came.  He came in for a bit and my husband was shocked to see him as he hadnt seen him since Feb although i had told him what to expect.  He now looks over 70yrs although he is only 41.  I think his tumour must be growing as although it grew to his windpipe(he has 2 stents in his windpipe) it must now be growing the other way through his gullet as he now cant eat solids which is a worry because we have been told he cant have a stent in his gullet as it is too high up towards his throat.  Im so glad he is still here for my daughters although i know he wont be here for my youngest turning 18.  See here i am again with nothing happy to report!!! Sorry  but at least the sun is shining today which is loads better than the rain we had yesterday.

Hope everyone else is doing great and lm slowly looking forward to christmasxxx

Hi Ben, I’m glad that you appreciated the pic of my kitten cat, he’s into everything and is a constant source of fun. 

You should have finished your first five treatments now and already you seem to be benefiting from it in terms of reduced pain.  Do you know when your next treatments are scheduled?  In the meantime, I hope that the tiredness doesn’t prevent you from getting out and about with Sharon.  “The Big Tired” that I have, as you succinctly called it, is a big head ache as it causes a big sleep, so sometimes things are a bit of an effort as I can’t sustain energy and lack stamina.  The docs recognise it for what it is, but can’t do much about it.  So, I’m trying to help myself and for the last two weeks have been able to control it to some extent by totally changing my diet.  Whether it’s due to this new diet or just coincidence doesn’t really matter to me, because at this very moment I have more energy than I’ve had in months.  Hope all is well today, (this evening for you) and that you’re feeling pretty good. Xx

Hi Julie, it’s great to see your post on this thread, so welcome.  Yes, unfortunately the sleepyhead image is hardly synonymous with Rock and Metal is it?  I have to say though, that it’s this type of music that seems to imbue me with short-term energy and I just can’t resist being the lead air guitar Lol.  I hope you’ve settled into your new home and are now surrounded by your family and old friends.  It must be a huge change from Austria and will take some getting used to I imagine.  How was your trip to Torquay and did you go on your Harleys?  How I love the growl of that bike.  I hope today finds David feeling good and his positive attitude is such a good thing for him as it provides strength.  Hope you’ll pop back here from time to time and update us on how you and David are doing.   Take care Julie. xx

Hi Leisha, if you want to post pics it’s so easy.  If you don’t have any stored in your computer, it’s simple to download from the internet.  You just have to ensure that the pics don’t have copyright ownership that’s all.  I’ll tell you how to do it in my next post here, if you want to do that?  Anyway, the main thing is, how is Ed coping with the chemo now he’s a couple of days into it?  I really hope that he will feel the benefit of it without the sickness.  How long is this course for, is it three weeks and then back for an infusion?  With your lovely attitude and sense of fun I’m positive that you keep Ed feeling the best that he can.  ((((((Hugs to you))))) xx

Hi Janet, It must be very difficult for your dad to maintain morale with all these ops and dilations he’s enduring.  I have to say though that it’s quite typical after this surgery to have really good days such as your dad being able to shop, and then the very next day feeling very ill with all manner of ailments.  It’s still often like that for many of us two years or more down the road.  It does get better, it does ease and we do learn to adapt to it and learn new ways of dealing with it.  It can be exhausting and amazing to those that care for us to quite understand about all these odd symptoms we keep getting, but in time everyone seems to adapt.  I hope all is well with your dad today, I send him a big hug to keep him going strong.  Hope you are well too Janet. Xx

Hi Marianne,

I’m glad that you’ve found our thread here so welcome to you too.  I know I posted to you in the Oesophagus group, but here is where we exchange info and also have a laugh and banter too, so feel free to join in any time.  I’m so glad that Tom is doing well on the chemo so hopefully the cancer will be controlled as a result.  You mentioned his positive attitude and it strikes me that you too are a sunny person, so I bet you each manage to support the other really well.  Take care and keep posting xx

Hi Steve, I laughed at your image of the kitten making his own cat flaps in every door and swigging ale with his mates rofl.  He does strike me as that kind of cat.  I hope you’re feeling good today and that the acid reflux is being contained.  Since taking the  zantac you recommended I haven’t been woken by the acid reflux either, so fingers crossed that this is actually working.  Hope your day is a good one.  xx

Hi gg,

Congratulations for your daughter’s 18^th birthday and I’m so glad that Roy made it for her special day.  It’s terrible I know to see someone so ill and it must be awful for your daughters to see their father like this.  I’m sure they get a lot of comfort and support from you, and in turn, your husband gives you the support that you need.  All you can do in your turn, is to give as much support to your ex as possible during his illness, which I know you have been doing.  Take good care.  xx

To anyone looking in, I hope today is as good as it possibly can be.  Love Crystal xx 

Hi everyone, im not going to try to name you all tonight,lol. i think you are all great , patients and carers, one and all.

Crystal, you are my super hero and i have to know what this magic diet is! I think you must share it or are you going to publish it and make a fortune! I still think you need some guinnea pigs first. From the length of your post it is working or you really are practising for a book.

I would love step by step instructions for the pics but I warn you I am useless. A son bought me " Computers for Dummies" but I couldnt understand it , lol! Just make sure you have lots of energy that day, ha ha.

Ed ok so far, not turned into superman or anything yet. I have had to make a chart so I get the tablets right and I can tick them off, i have senior moments, the memory is not what it was!

Nite nite all, sleep well and lets hope the sun shines tomorrow, love leisha xxx

Hi Ben, I think of you in paradise and smile. Here the weather is shocking. There is terrible flooding and your heart goes out to people who have lost everything and just before christmas too. My loss is just a tree we planted 5 years ago but it made me sad as i thought it was well rooted and now it is flattened but i will get my grandson to try and rescue it. 

I hope your treatment is bringing you some relief, thinking of you

Hi Steve, hope you are ok and safe from the weather we are experiencing here.

Hi Crystal, You never complain but I think of you and hope you are spring cleaning ready for christmas whilst rocking away with your kitty cat.

Ed seems to be coping better with the chemo after a horrible week he is now getting out again although only for half an hour it makes life better. I have to tell you he frightened me yesterday when I heard the JCB revving up outside. I rushed out ( remember when he nearly destroyed my new gates) but he was just sat in it and said he missed the sound of it ! which is a shame as those days wont return.

Well look forward to hearing how you all are and anyone else looking in. Hope you are all comfortable and cosy, love leisha xxx

3rd time lucky !! where are you all? Just thought I would look and see what you are all up to and no one at home, lol . Not much to report but in a way that is good for Ed is ok and slowly eating more and trying to get out in spite of weather. Actually sunny today which helps and Ed got someone to come and service the JCB. I dont think it needed it but he talked non stop to the fella so he earned his fee, lol. 

Well christmas is not far away. Anyone got anything whacky planned? What do they do in paradise Ben? I fancy turkey on the beach. I just hope I dont have to watch Wizard of Oz on the box AGAIN !!!!!!!!!!

Hope you are all happy and cosy, love leisha xxxxxxxx

Hi Leisha

Well here I am, but I don’t know where the others have got to.  I reckon they’re hibernating.  I’m so pleased that Ed is eating again and managing to get out, and hopefully he’ll even be able to manage some Christmas lunch.  Wouldn’t it be lovely to have turkey on the beach as you suggested?  Watch out Ben, here we come.  I’ve never seen the Wizard of Oz, simply because I couldn’t stand the sight of the character Dorothy or some of the silly dialogue I’d heard.  But then that’s just me, as I know what a popular film it is.  We don’t know about Christmas yet.  Now that we have no responsibilities we’d considered perhaps having a snowy Christmas in Austria or a sunny one in southern Italy, but my fatigue was a problem at the time we should have booked.  Would you have normally spent Christmas in Spain?  Anyway, I hope that you’re having a nice, cosy and relaxing evening together and that you’re both feeling well.  I’ll pm you tomorrow.  (((((hugs)))) xx   

Hi Ben

You have been in my thoughts almost constantly because I’ve been hoping and praying that the radiotherapy is doing its work and reducing that pain.  I know you’re probably far too tired to be posting here and that’s ok because we understand.  Once the treatment’s finished and you’ve had time to recover some energy, I know you’ll drop by here and get us up to date.  In the meantime, do what your body tells you, not what your mind says, as physically you will need to rest up quite a bit even though your mind rebels. I’m sending big hugs to you and Sharon and sending you strength and healing thoughts to keep you going. xx

Hi Steve

I’m thinking of you too and hoping your weekend is a happy, cosy and peaceful one.  I hope too that you’re having some relaxation time for yourself because I know how hard you work and how you love the DIY and car maintenance.  In fact, I bet you’re busy doing something around the house right now Lol.  Take care. xx

To Everyone looking in, I hope your evening and the rest of the weekend is as good as it possibly can be.

Love Crystal xx

Hi Crystal

Your right, I have been over doing it a little, but everything finished and tools packed away and right now chilling out to the sound of Nat King Cole easy listening after working to Led Zeppelin; will take it easy Sunday ready for work on Monday.

I hope everything is well with you.

Hi Ben

Will reiterate what Crystal has said and to wish you well with the ongoing treatment, be sure to let us know how you are getting on as soon as you are ready.

Give my best to Sharon,

Hi Leisha

So pleased to know Ed is coping a little better with his treatment, it’s good he has an interest in the JCB, boys and their toys you just can’t separate us which is a good thing!

Take real good care of yourself,

To everyone else looking in I wish you a good night.

Steve

Hi All

Wish us luck - results day tomorrow! 

Julie xxx

Hi Julie good luck for tomorrow  will be thinking of you both.

                                               Marianne x