Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

hi,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

Hi Andi 

i have had the same problem with the lifting your arms high enough to get a tshirt or jumper on and off for the first seven or eight months , i also had the dreaded bingo wings but now i am at the gym i have managed to sort the muscle loss problem , i am still working on the turkey neck if anyone has any tips let me know , anyway take care as always.

regards

Douglas

Hi Andi,

Good to hear from you! You made me laugh re the dress!

My husband has been part of the NHS Active Recovery Programme that has been on zoom. They do a gentle chair exercise one day and a slightly more energetic one on another day. Maybe worth asking the consultant if your NHS Trust does something similar for cancer patients? Do you swim? Doing gentle exercises in the pool with the support of the water may help?

Your team know you so they would be the best people to ask re your arm and swallowing. I know some people need a small procedure to stretch the oesophagus sometimes due to scar tissue forming.

You have come such a long way since your op and extended weeks in hospital. Well done! I guess if someone had told you when you were very poorly about your dress episode you'd have found it hard to comprehend that you'd be trying a dress on let alone cutting a dress off! Lol.

Hope your appointment goes well and they give you some help/advice.

keeping the faith

Milly
 

Hi Tracy,

Yes it does make it difficult not being able to see your husband. I must say the Consultant Surgeon and ICU staff were very good at keeping me informed but still not the same as actually seeing them. He did get his mobile back after a couple of days but the Wi-Fi was useless so only managed a FaceTime once during is extended stay. Hopefully your hospital's Wi-Fi is more reliable!
 

The time will pass and he will be extremely busy with all the care they give. My husband can't praise the staff enough for their care and compassion. Yes fingers crossed for good biopsy results - it's a very tough time for you all. There are positive stories and my husband is doing well so far (fingers crossed). We are thinking of you and sending healing and positive thoughts your way.

keeping the faith

Milly
 

Hello y'all and to Tracy, 

Gosh we really are all moving on. I am no longer 'checking ' every day for posts, just one a week.

ye, the cough arrrg. What to,say, I do think some it is 'psychosomatic'- I know myself, if I think I'm in a situation where I really don't want to coughing- well guess what. And I know that once you start , it is really really difficult to stop! I wonder if that is why the beer helps, relaxing the old brain etc. 

MIllie- you WILL get to Tenerife, those bones need to be warmed, We are off to US in April , come what may (:.

Tracy- yep, oesophagectomy is about as massive as It gets, they take away most of it. Pain after is compulsory, but mine had one of those self administered pumps and had top up opiated etc. The right shoulder pain is a fascinating one for many reasons. I was a nurse back in the day (left 1990), when laparoscopic surgery was just taking off and right shoulder pain was par for the course and it was always down to get this - wind- trapped and making a nuisance of itself. Of course all laparoscopic surgery involved pumping patients full of co2 , so they could see inside. Mine had laparoscopic oesophagectomy so FULL of wind. Even though Ivor Lewis in not laparoscopic, he would have been seriously pulled about, lung deflation, turned over, bits and pieces moved about,his body will be well miffed. so yes, pretty normal, but unpleasant nonetheless. On top of pain, there is the added 'bonus' of discomfort, being in the same positions etc, BUT, as you move and heal it gets better and better. Mine was pain free totally after about 3 months.

As for visiting and covid. Still a total pain. I was allowed in (dec 20), but then hysterics started again and was no longer allowed in. Honestly, this really does need to move on now- if one has a negative LFT, then why on earth are visitors not allowed. Not masses, but just one blooming relative. 
Anyways folks, until next week

keep keeping that faith

Hilts.x

Thank you all, means a lot knowing I can come on to this forum and express my worries.  
You  all are a very supportive  bunch.  I will no doubt be asking more questions. But for now all take care. And keep living life to the full.

Tracy

Hi Back again,

Ive had my review with both the surgeon and the oncologist and both have stated that there was no need for me to have post op chemo.

From the research they believe the most efficient method is Pre Op Chemo FLOT and then the Op, there was very little evidence to show that post op would have any material effect.

They did say that if they gave me any more chemo it would make my neuropathy (nerve damage) and its wouldnt be worth the risk, they will continue to keep me monitored.

My operation was 9th November and I'm recovering well, back at work and walking the dog. I can eat almost anything, however smaller plates and not eat too late.

Ive been asked to go onto the aspirin trial as they believe aspirin can help stop cancers returning, fingers arms nd legs crossed thats the case.

Wishing my fellow OC's the best of health and to those that are new, yes its scary but there is loads of support out there and you will come through just like me.

Regards

Tipo

hi Tipo 

that's good i have been on the adaspirin trial since November 2020 its aimed at preventing bowel cancer only downside has been any shaving cuts and i am bleeding like the proverbial sheep lol , i have learned just to be more careful !! , i like you didn't need the post op chemo , take it easy.

Regards

Douglas

Oesophageal Adenocarcinoma

My Journey

I have had GORD constantly for more than 30 years, together with an hiatus hernia. Four years ago, it was particularly persistent, and so having a forceful chat with my GP, managed to get him to refer me for an endoscopy. They discovered Barratts, about 3 inches long at the bottom of the Oesophagus. Having been reassured that it was nothing to worry about, was told to have a surveillance endoscopy in 2020, just to keep an eye on things. However, they forgot about that and so, in August last year, I reminded them. Finally was seen at the beginning of November, and the usual biopsies and polyps were removed for checking ️ 
Two weeks later, at the end of November, I was given another appointment for yet another endoscopy, after which I was subjected to a CAT scan. Saying goodbye   to the endoscopist, he said to go to another hospital for an EUS. (Endoscopy plus ultrasound examination. He also gave me a business card which, he said  might be useful. I subsequently discovered the name 'Macmillan' printed on the back. All of this in just about 4 weeks. Following the examination, on 15 December, I had a telephone ️ call on Christmas Eve from my cancer specialist nurse to tell me that I had been diagnosed with Oesophageal Adenocarcinoma, situated at the Gastro Oesophageal Junction (GOJ).
I quickly established a friendship with Vicky, my cancer specialist nurse, who has been a mine of sympathetic and accurate information. I had a PETscan which told them (and me) that the cancer had been staged as T2 N0 M0, which is very good news - it hasn't spread outside the Oesophagus
So, after an appointment with a surgeon, and 2 with an oncologist, I have loads new friends, some new pipework in my arm and chest called a PICC line, and a quantity of poisonous chemicals swanning around inside me, hopefully killing off all these nasty little cells instead of them killing me I am now just coming up to my second load of chemotherapy.  It is not a lot of fun, but if it saves my life, it will be all worthwhile.
It is not my intention to frighten anyone with my story. Rather to say this dreadful disease is not the end of the world. The NHS staff and organisation, once I had escaped the GPs, has been nothing short of exceptional, providing caring, sympathetic and unstinting help 24 hours a day. The Macmillan nurses likewise  offering help and advice whenever I have needed. My wife, in spite of what she has had to put up with (me), is my rock. A final major thanks to the members of the Cancer Research UK forum for Oesophageal Cancer. Although, to my shame, I have never posted there, I have read every post that has ever been added. At my last count, there were 65 pages, and the contributors to those pages I feel are friends that I will likely never meet, but are people to whom I owe my thanks and praise without limit.
Finally, to anyone who has had the determination and fortitude to make it this far, please take heart from what I have written. You will meet many truly wonderful people in the course of your journey through the disease. Everyone's journey is different, but the people you will meet will remain your friends all the way by your side. For my part, I am here 24/7 ️for anyone who wants to rage, rant, cry or just chat. I promise you my support in any way I can

to worry about, was told to have a surveillance endoscopy in 2020, just to keep an eye on things. However, they forgot about that and so, in August last year, I reminded them. Finally was seen at the beginning of November, and the usual biopsies and polyps were removed for checking ️

Two weeks later, at the end of November, I was given another appointment for yet another endoscopy, after which I was subjected to a CAT scan. Saying goodbye to the endoscopist, he said to go to another hospital for an EUS. (Endoscopy plus ultrasound examination. He also gave me a business card which, he said might be useful. I subsequently discovered the name 'Macmillan' printed on the back. All of this in just about 4 weeks. Following the examination, on 15 December, I had a telephone ️ call on Christmas Eve from my cancer specialist nurse to tell me that I had been diagnosed with Oesophageal Adenocarcinoma, situated at the Gastro Oesophageal Junction (GOJ).

I quickly established a friendship with Vicky, my cancer specialist nurse, who has been a mine of sympathetic and accurate information. I had a PETscan which told them (and me) that the cancer had been staged as T2 N0 M0, which is very good news - it hasn't spread outside the Oesophagus

So, after an appointment with a surgeon, and 2 with an oncologist, I have loads new friends, some new pipework in my arm and chest called a PICC line, and a quantity of poisonous chemicals swanning around inside me, hopefully killing off all these nasty little cells instead of them killing me I am now just coming up to my second load of chemotherapy. It is not a lot of fun, but if it saves my life, it will be all worthwhile.

Finally, to anyone who has had the determination and fortitude to make it this far, please take heart from what I have written. You will meet many truly wonderful people in the course of your journey through the disease. Everyone's journey is different, but the people you will meet will remain your friends all the way by your side. For my part, I am here 24/7 ️for anyone who wants to rage, rant, cry or just chat. I promise you my support in any way I can

Hi Snaggie,

Welcome and I'm glad the diagnosis was at a relatively early stage... that's good news.

Unfortunately your story is all too familiar and there is big room for improvement in the process of getting a patient from the first stage of visiting a GP (if that's possible) to actually having the endoscopy.

As this disease is getting more common and attracting younger people, it would be nice to see an endoscopy as part of a regular annual checkup for the over 40's/50's...I think it's only in one or two countries where this happens-Japan may be one of them if my memory serves me well.

We are based here in Spain and the process was similarly slow here at the initial stage (COVID also playing it's part).

As you would have seen on here, chemotherapy isn't nice but in lots of situations it has a certain amount of success.

Good luck with your journey.

Lee

Hi Snaggie,

Welcome - you are at the beginning of your pathway and sound very upbeat and positive which is good. I'm glad we have all helped you during the initial turmoil of diagnosis and staging. As you say the NHS staff are brilliant and it's good to hear that yiu have seen the surgeon. My husband didn't get an appointment until after he had finished the first FLOT. Everyone is treated as an individual and each case varies.  However the care is wonderful and the specialist nurses are such a support. 
You have clearly 'done your homework'  and read all 65 pages! So you will know we have had different stories and outcomes., Stick with it - my husband went through some unexpected twists and turn but is doing well - fingers crossed. He saw the oncologist for his 'check up' on 9th February (he was diagnosed end Oct 2020 and so far so good. We see them again in 3 months.

So keep drinking that water to flush out the toxins and please, if you feel able to, keep us informed. Any questions just ask - no medical expertise just experience. 

keeping the faith

Milly
 

Hi Snaggie,

Welcome - you are at the beginning of your pathway and sound very upbeat and positive which is good. I'm glad we have all helped you during the initial turmoil of diagnosis and staging. As you say the NHS staff are brilliant and it's good to hear that yiu have seen the surgeon. My husband didn't get an appointment until after he had finished the first FLOT. Everyone is treated as an individual and each case varies.  However the care is wonderful and the specialist nurses are such a support. 
You have clearly 'done your homework'  and read all 65 pages! So you will know we have had different stories and outcomes., Stick with it - my husband went through some unexpected twists and turn but is doing well - fingers crossed. He saw the oncologist for his 'check up' on 9th February (he was diagnosed end Oct 2020 and so far so good. We see them again in 3 months.

So keep drinking that water to flush out the toxins and please, if you feel able to, keep us informed. Any questions just ask - no medical expertise just experience. 

keeping the faith

Milly
 

Hi all.

Went for 2nd cycle of FLOT today. Disaster struck as they were a wee bit worried that I had lost 9 kilos since the first cycle 2 weeks ago. Personally, I was delighted as I  have been trying to lose weight for ages, but they did not seem to be equally pleased! It is something to do with being sick as a parrot and not getting enough sleep   apparently 3 or 4 hours a night is not good. Also, a bowl of porridge a day does not count as eating either. One plus is I get to see the consultant oncologist tomorrow at 1025hrs. Anyway, had a great time with all my new pals in the Oncology Suite .

Keeping the faith here in Lincoln.  God bless  

Snaggie 

Hi y'all.

Bit of difficulty logging in this morning. I forgot my password!!!!! That is a very good 'moving on sign' I reckon, must be about 10 days since last log on - anyways........

Big welcome to the club Snaggie- bet you thought you were the only one out there with this until.........

yep- we have all been living the dream for +/- 18 months now.

Husband diagnosed with EXACTLY the same staging as you in July 2020.

we have all referred to this as the rollercoaster, so here you are.

Weight loss and vomiting - yep, compulsory part of the ride. BUT, you must speak to your team. They can give you different anti sickness etc etc. also eat whatever you want whenever you want. You don't want to be turning into the invisible man LOL.  Those suplime t thingys are RANK, so find normal stuff and 'adapt' it. How bad was your swallow before the chemo started, my husbands was pretty bad, gagging and vomiting after everything,BUT after the second chemo he was very much back to being able to scoff anything- once the nausea had gone down a bit. My husbands weight loss came a bit before, but mostly after, it is going back on now though, I have no idea why that might be.........

As for us- well , husband just had his 2 nd scar tissue stretch- bingo coughing stopped - big clapping emoji's. What did he do to 'celebrate' ***, peas, chips, white sliced and 3 pints !!!! Arg , I had to have it as well though ( yuuuuuummmm). I have said to him, it might be a bit of a pain, but if that is all that we have to put up with maybe an annual stretch, then I will certainly take it, considering what we have been through and what might have been.

snaggie- we LOVE Lincolnshire, went on hols there last year after post op chemo and we Loved it a place called sutton on sea- Millie is also familiar with it. Mablethorpe was just how I like it - totally unspoiled and traditional- bit like my old Barry island stomping ground.

We are busy getting prepped for USA IN 6 weeks. It's gonna be expensive, but as we learnt you can't take it with you so may as well blow it,LOL

Good to hear from you Lee. Sorry stuff is not so good. Form my ex nurse days, kidney stones is about as close to childbirth that men get, no consolation though. Not much treatment apart from passing them. Your poor Dad. Do tell him and you remember , we are all cheering for you and like to hear from you.

Still windy here in central England city of Morse

off now to Marshall kids ( teens) and husband, will come back later when no one bothering me

keep keeping the faith folk

hilts xxx

Thanks Hilts, good to hear you're all doing well.

Lee

hi snaggie

your T2NOMO diagnosis is very good news , the bowl of porridge ! , well must try hatder , i lived on flavoured milk and sugar free sweets throughout my chemo and lost about the same but over 8 weeks not 2 , the real weight loss happens after the surgery so it's good to have a bit of reserve fat for the healing process , the rest you seem to have under control as for your new pals i had a couple of chemo buddies who i went through my treatment with which made it less boring and i still keep in touch with them , anyway take it easy and before you know it you will be sitting at home wondering what all the fuss was about.

Regards

Douglas

Hi Hilts,

I'm pleased to hear that the latest 'stretch' has worked for the cough! Impressed with the 'diet' too!

Interesting re weight gain, my husband seems stuck no matter what but everything crossed the 'dumping' seems to be less frequent so hoping it lessens and eventually isn't a problem. He has cut out chocolate and will gradually introduce a bit at a time. He had half a chocolate orange quite a while ago with bad results lol! Beer definitely helps apparently!

Please keep posting even if it's less frequent as it's good to hear how your husband and you of course are doing.
 

keeping the faith

Milly