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

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 Lee and everyone,

I hope your dad is chugging along Lee and you are OK too.  I think of everyone on here and wonder how you are all doing. I definitely agree re endoscopy as a routine check up - like we have mammograms. My mum died aged 51 from Breast cancer so it's reassuring to be checked. 

Kev had his 'check up' on February 9th it was just a chat and a weight check (he can't seem to increase his weight) 
It seems so strange that there are no scans etc but I believe this is the standard practice. Anyhows he is doing well so far - fingers crossed.

Hopefully the weather in Spain is better than here at the moment! 

Keeping the faith for everyone 

Milly
 

Hi Milly,

We are having a rough time at the moment. I don't remember my last post but keeping it brief...Dad is constantly dry wrenching and eating only a very little food and water. He is in constant pain and last week we ended up in a&e and the scans showed he has kidney stones-ffs!

So they are not quite sure but the common belief is that the kidney stones are causing so much pain which is triggering the sickness (even though there's no food comming up only phlegm) but the cocktail of medication and the cancer is also playing it's part.

The oncologist has said that they want the stones to pass naturally but would look at layering them as last resort.

Dad is on chemotherapy again but today we had to cancel the appointment as he was awake all lady night in pain and trying to be sick.

I remember you mentioned your husband being a Derby supporter and working at Rolls Royce - we were from Derby/Nottingham and my Dad worked at Cauthalds (don't think that's the correct spelling!)

Lee

Hi Lee,

I'm so sorry to hear that your dad Is unwell and you are all having such a tough time. Hopefully if they can sort the kidney stones it will help him. It's very hard seeing your loved ones poorly. I'm sure your and your families support is a huge comfort too him. I really hope he can start to feel better. 
 

Yes my husband and indeed I worked at Rolls-Royce. I left in 1988 after our son was born. My husband took early retirement in 2015 thankfully. Although some people find work helps them have a focus. We took the opportunity to do some travelling. I went back doing some supply work but then COVID hit followed by Kev's shock diagnosis. Courtaulds was a big employer in Derby and our friend Mark worked there too. Being a Derby County fan is not easy lol. You may or may not know there has been lots going on off the pitch never mind on it! We went on Saturday - fantastic atmosphere and a hard fought 1 - 0 victory. 
 

I'm sending healing hugs and hope for your dad to get rid of those pesky kidney stones and start to feel better. Thanks for being brave and replying. I think of you all often even though we've never met.

keeping the faith as always

Milly