Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Stage 4 Esophageal Cancer

Shanney70
Posted by

Morning Martin 

glad spain was nice for you both 

my husband is having more chemo again since his hand/foot syndrome that has now fully cleared. He now has herceptin as part of his treatment and they have reduced his chemo tablets from 8 aday to 4 a day. He only feels sick a couple of days after chemo but steroids work well for him. He is eating very well considering I don’t feel he is eating enough calories but he is filling himself up at every meal which is good. 

He had a scare on Friday feeling like his stent had blocked as he was struggling to get anything down ended up in hospital but once I found out that he had eaten a punnet of strawberry’s because they were “irresistible before I knew it they were gone!!” The Drs realises an endoscope wasn’t necessary but IV antacids was and cleared his inflammation of his oesophagus within minutes and eating and drinking as normal within the hour !!! I’m now banning strawberries he he 

We are seeing the oncologist tomorrow so fingers crossed all will be ok. His biggest problem at the moment is his feet because of his diabetes he is also waiting for half of his foot to be amputated but he needs to be stronger  before that can happen. Although I think the closer to summer it gets he is starting to think about summer foot wear said the other day “how am I going to wear flip flops in the summer”? The fact he is now looking forward rather than just trying to get through the day is hopeful that his mindset is changing. 

Considering all of it he is feeling ok but tired. He takes Morphine but I am getting him to reduce this because I don’t feel he is in enough pain for it now and want him to be pain free and not too used to the drug also fatigue is the side effect he needs more energy 

He won’t come into these forums but I tell him everyone’s story and he asks me every now and again how people are on here head in sand syndrome is still evident !! 

Keep well, days are longer now so always improves mind set 

cath 

Cath 
Auldfarrt
Posted by

Hi Cath,

It starting to sound as if your husband is on the up, which is great. Hope he continues to improve, and beats it in the end.

You say he's got "head in the sand" syndrome, to be honest if that's how he feels he can cope with it, there's nothing wrong with it. I've probably got it myself to a degree. I'm a firm believer in doing whatever works for you.

Sorry to hear about his diabetes and having to wait a while for an op. Interesting possible read across to me because when they did the PET scan, they also noticed I had a hernia, which I wasn't really aware of before. However, it seems to be starting to act up a bit and I was wondering whether I should try and get it repaired during, before or after chemo. I suppose I'll just have to talk to the oncologist about it when I see her in April. 

Interesting little story about the strawberries too, I need to watch the volume of food I eat at one sitting. I have had a tendency to over eat, but I'm, now aware that my appetite isn't as big as it used to be, so I do trying and control it. Although I did overdo things in Spain one night, I tried the half roast chicken (very Spanish I know, but I just fancied it) and it was lovely, great flavour, so I ate too much and suffered that night and the next day. So now we're home we've take to eating the main meal at lunch time and then just snacky type things. 

I suppose I'm lucky at the moment as I don't seem to have half the symptoms a lot of people have despite being diagnosed with Stage 4. I think things will change, especially when chemo. starts. Not looking forward to that.

Sounds like you're doing a good job looking after him. 

Take care, and I hope things continue to get better for him.

Martin

Gibbo9
Posted by

Hi Martin.

My son doesn't do washing up either but has turned out rather well, he's a good kid?bloke?

son? I don't know quite how to put it but he's turned out alright which I'm sure yours has too so what's a bit of washing up?Annoying at the time though! 

Youve really been through it haven't you what with prostate problems as well. Can I ask what sort of lifestyle did you lead prior to all this starting?Did you smoke or drink heavily and what was your diet like? 

I have led quite a toxic lifestyle but there's lots of people who have been worse than me that have not got cancer. Is it totally indiscriminate, what

Buddhists refer to as the unreliability of the body?

I am off to Exeter in a min to have lunch with my step-daughter, I raised 5 kids,  2 of which are biologically mine. One of my stepdaughter had cystic fibrosis and died at the age of 21.

Do you like listening to music?I am playing a lot of old stuff at the moment and attaching tunes to  memories. I love doing that. Yesterday I was in church and we were singing an old hymn, I could place myself in primary school and secondary school singing it and the words came right back, it was quite something. 

Hope you have a good day.

The chemo may not knock you for six, it could be that you will cope with it alright?Lets hope so. I am seeing the oncologist a week after your appointment and will definitely give the chemo a go, I have been on it twice and it was not very nice but I could function? 

Take care

Pete. 

Auldfarrt
Posted by

Hi Pete,

To be honest our three kids have all turned out fine. We think so anyway. We've got the lad with us at the moment while he's sets up and starts running his own business. He was living in London previously, so at least we're contributing by saving him London rental costs. The girls are both married with two kids each, and they both seemed very settled. I think I said before that one of them lives in the same village as us so we do a little bit of the school run (walk really) with the eldest whilst the youngest is only about 20 months. The other daughter lives up in Grantham which is a bit of a drive but do-able even for a day trip.

You ask about my lifestyle. I was an accountant within a large manufacturing business (United Biscuits, to be precise) so pretty sedentary. I used to smoke quite heavily until about 1991 and then gave up. Drink probably more the the recommended levels (but I think most do) but nothing OTT. Wine at home, beer down the pub. Diet was pretty well balanced, I think (or probably like to think), although 5-a-day wasn't always achieved but we tended to grill rather than fry if that type of cooking was called for. I am overweight, about 14 and a half stone and 5 foot 10. 

I don't know whether my past medical history has contributed, who can tell. I had a mechanical aortic value in 2005, then the prostate problems I mentioned before. In 2017 I contracted endocarditis which put me in hospital for 8 weeks on intravenous antibiotics. One of the antibiotics has left me with balance issues  so that I can't walk too far without the comfort of a stick, and affected my eyes in that they "jiggle" when my head moves. This has meant that driving is nigh on impossible. So there you go - I really am a healthy bu@@@r.

I've never been really musical. I listen to Radio 2 now and again, and occasional play a CD or two, but music has never really been a big driver in my life.

Thanks for your thoughts on the chemo. I'll give it a whirl and see.

I hope your have a good lunch with your stepdaughter. I'm sorry to hear about the one that died. Not nice kids dying before you at all.

Take care, yourself. "Talk" soon.

Martin

Gibbo9
Posted by

Hi Martin.

Thanks for the post.

I am 5 11 and 13and a half stone but was 15 stone before all this started.

I have a brother who is 18 months older than me 

who had a brain tumour about 7 years ago, he cannot work or drive and has memory and balance issues. We are a right pair, I was talking to him last night and said why us but again it just seems to be what Steven hawking referred to as random pitiless indifference .

I never had a bad day yesterday but it hurt when I lay down last night, the cancer is in my bones and the pain is controlled with meds. Have you got any symptoms at the moment?

That seems to be how they initially measure how the cancer is progressing. And everyone says how well I look!!!

What are you up to today, any plans? Walking your grandchild to school sounds great.

I have 3 grandchildren, I lost contact with my other step-daughter who lives in Australia.

My background is in industry, not sedentary, some days my legs were dropping off when I got home, I was a magazine printer.

I see Line of duty is back on TV. Have you watched any of the old series?Its very good.

Well, must stop waffling and get on with a few things

Have a good day.

Pete.

Auldfarrt
Posted by

Hi Pete.

Nothing wrong with a bit of waffling - can be fun.

This  all started when the oncologist I see for the prostate cancer said I was anaemic and sent a letter to my GP. The GP took another blood test, confirmed I was (although I felt fine) and sent me for an endoscopy both "up and down". The up was was fine, just a case of diverticular disease but the down one identified the cancer. I've got an hiatus hernia so any symptoms / bloatedness I was putting down to that. Initially the cancer guys were talking about surgery but further test showed that it had spread to a couple of lymph nodes so they said that surgery was a no-go, and that I was terminal. It hadn't got into my bones just the lymphatic system. Even now, the only symptoms I have are a bit of regurgitation occasionally caused by coughing. I don't have any pain. I think maybe why they said to go on holiday for a bit, before Brexit too. How long have you had this problem?

Granddaughter now at school. I think I'm being dragged of to Sainsbury's shortly. Then I'll probably get on with a bit of genealogy. I find it quite fascinating. Nothing special in my background though, all farm labourers in the past. 

I think Line of Duty is a superb programme. This latest series has got of to a good start too. 

OOPS - Sainsbury's calling.

Have a good day yourself.

Martin

Gibbo9
Posted by

Hi Martin

My brothers put me on to line of duty and I put my sister onto it, haven't seen the new one yet but ted is my favourite character .

It all started for me a year ago, I had trouble swallowing, increasingly food was getting more and more stuck. I left it and left it, went to see a nurse for a copd  check and as an afterthought said oh and by the way .........

I had an endoscopy a week later and lo and behold there it was.

Initially I responded really well to chemo, it shrank the rumour , the consultant seemed really positive and I had my gullet removed and my stomach stretched to provide a new one. I had post operative chemo but a routine scan after showed the cancer was in my bones and goodnight Vienna

Thats my story, I know the cancers progressing as I can feel it, a lot of pain around my right shoulder and down the right hand side today.

I have been to see my daughter today and done some shopping. My granddaughter is nearly 2 , its awful to think I will never see her grow up but I am not gonna get dementia or heart disease , will not be a burden on my family in any way and my kids will sell my house and both get on the housing ladder

I find it fascinating that the oncologist says that chemo could give me another 3 months but may impact on my quality of life. As I said before 3 months is three months and what the oncologist said is something someone would say who is not faced with that choice.

Anyway, hope you 'enjoyed' Sainsburys

I am gonna watch the chase then go to a prayer meeting. My ex-partner was a Christian and encouraged me to go to church. I was a Buddhist when we met although I disliked that label. Anyway, we split up, mainly because I got ill, she couldn't handle it, but strangely something pulls me back to church. I am not the most devout of believers but do possess a mustard seed of faith.

What else do you like doing apart from watching line of duty and studying gegeology. Sorry to learn that you can't drive, my brother is in the same boat.

Meeting an old mate tomorrow for a pub lunch.

Take care

Pete.

BrentS
Posted by

We have just watched all the previous four series of line of duty on Netflix (again). Can’t wait for the next series but waiting to start watching it till we come back from holiday as we could forget some details while we are away.

Following you guys with interest and enjoyment, if that’s the right word. You are certainly an inspiration and give me lots to think about.

Counting the days, making every day count.

Brent

Shanney70
Posted by

Brent I was thinking exactly the same. The internet brings so many people together for so many reasons. 

My husband has faith being Portuguese and catholic but he was losing his faith until Sunday when I was sick of hearing him say what had he done to god to make him suffer like this .... I told him god had given him lots of warnings but he ignored them and carried on his poor lifestyle drinking unhealthy diet no exercise. I told him god gave him diabetes but he didn’t change his lifestyle, a hiatus hernia but he didn’t change, trouble swallowing still didn’t change so tried him with cancer - he has now stopped drinking and eating healthy he now wants to do the best by his body. And has suddenly decided he will prayer again and wants some holy water although his holy water was a pint of Guinness or red wine. Everything has changed !! 

We seperated 13 years ago but are now best of friends again and see each other every day. He now has a purpose to live we go out I take him to all his hospital appointments and chemo and he is stronger. Fingers crossed he has more time now. He will probably move back in with us because I’m shattered keep going to see him and doing his washing shopping and cleaning he he 

I feel you cope with something like this in so many different ways there are so many different stories of miracles - a friend of mine mother had stage 4 breast cancer she refused all treatment because she had COPD as well so was adviced nothing could be done she is very religious and went home and said to everyone “I will control my COPD and god can take care of the cancer within 6 months the cancer was gone her oncologist thought scans had got mixed up. We are all still stunned over it she is a very strong lady but has strong believes. 

I don’t think it matters what your religion just whatever feels right for you and that can help your emotional well-being is good 

now that line of duty has been recommended I will go and have a watch 

Cath 

Cath 
Auldfarrt
Posted by

Hi Pete,

Sorry to hear about the pain, but I'm glad it's not stopping you getting out a bit and seeing family and friends. I must admit I try not to think about missing the kids and grand-kids, it doesn't do me any favours. Although it's difficult not to at times.

Sainsbury's was "exciting". Never realised there are some many doddery old folk going round supermarkets in the day midweek. Then I thought hang on, you're one, your stupid old sod.

I must admit religion has never played a big part in my life. We had the children christened shortly after they were born, but never really followed up on their religious education. I go to church for weddings, funerals and occasionally at Christmas but that's about it. I sort of believe, but not quite sure - probably like most people in this country. What drew you to Buddhism, and how long were you a Buddhist? 

Are you a Game of Thrones fan? I'm looking forward to that coming back in a couple of weeks. I love the fantasy of it all, and a great story line as long as you can keep track of all the characters.

I used to try and play golf 2/3 times a week, with the emphasis on try. I wasn't particularly good but the crowd I played with were a nice bunch of blokes and we all got on well. We used to have short breaks (2/3 nights) away playing different courses, and then a week in Portugal golfing every year. But that's had to go by the board with this balance problem, amongst other things.

I'm a big football follower. Given the opportunity I'll watch most matches on the box, although I have to give way to my wife occasionally. I've been a life-long Manchester City fan. Followed them since the early Sixties with their heart rending ups and downs. It's great to see them doing so well at the moment. I still try to get up to see them once or twice a season but it's about a two and a half hour drive each way, and may be longer depending on the joys of the M6. 

I really miss driving. I used to drive between 15,000 and 20,000 miles a year between business and pleasure. Even after retiring, I was driving 12,000 to 15,0000 a year. Now I have to rely on my wife, and the number of times I have to bite my tongue is nobody's business. Sometimes my son will drive me. It's him that takes me to the Etihad these days.

I've got myself a little part-time job. I work two mornings a week (3 hours each) for the Parish Council doing the bookkeeping and bits. The village hall is only just round the corner, and it gets me out of the house. It's been useful as well, in that we only moved into the village 18 months ago so it's helped me find out what's going on and helped me meet people. I'm lucky really there are three pubs in the village, there's one that is more of an eating pub, there's a "lads" pub and there other one hasn't made up it's mind what it wants to be yet. 

Anyway, I'm rabbiting on a bit so I better stop now. To be honest, Pete, I really enjoy our little "talks". We talk about the cancer and it's effects and treatment and stuff, but we get on to other things as well. Obviously the cancer is the big thing, but it's not the only thing.

You have a cracking pub lunch with your mate.

Take care, and "talk" soon.

Martin

Gibbo9
Posted by

Hi Martin

GlD to hear you are holding down a part time job, that's really good, I find myself thinking what if all this had gone the other way, I had already been in cancer research shop offering my services, was gonna help with the church youth meetings and was even gonna pursue a lady who I liked with a view to a date but alas it's all gone now.

Not into game of thrones, tried it once but there was too much sex in it for me.Couldnt watch that stuff with my ex-partner as she was a bit prudish?

I was hopeless at golf and believe me I tried, I never broke a hundred Martin , the closest I got was 104 I think and that was on a net 68 course. Can't even try to play anymore as my shoulder hurts a lot of the time. My Dad was quite good and my brother got down to playing off of about 5 I think.

Football though? Now you're talking, am a lifelong 

Arsenal fan, went to Highbury school, being a north Londoner and was watching them from the age of about 6 in the clock end with my Dad and uncles. We are not having a bad season but are miles behind Man city, less Liverpool I would say. My Son told me an amazing stat the other night apparently, the last time someone successfully dribbled past Virgil van dijk was last March.

I think the titles your to lose but I predicted months ago when Pickford made that howler against Liverpool that that would be the difference in the end, Liverpool to win it by 2 points but it's yours to lose I think, you are the better side .

Spurs playing in their new stadium tonight, wouldn't it be great if they lost? Ha ha.

I remember the great city side of the sixties, was it the sixties? Lee, Bell, Summerbee and I remember the scrap between Lee and Norman bites your legs.

I also remember the mediocrity of Arsenal in the sixties, I was there for most of it!!!

Got to get on

Take care

Pete

Auldfarrt
Posted by

Hi Pete,

ARSENAL!!!! lol

I started watching City in the early 60s as a said. They were in the depths of the old 2nd Division. George Poyser was manager (who, did I hear you say). Then later on Joe Mercer came in and started to build the team and then brought in Allison. I remember one time playing Arsenal, they were always close games 1-0 either way, and we got a free kick half way into your half. I forgot who took the kick for City, probably Summerbee, and Ian Ure was standing about 10 yards away, and he got straight into his nether regions. The cheers that went up in the Kippax Stand were huge. Not sure why that sticks in my mind but there you go.

My son-in-law is a Spurs fan. When they've been playing at Wembley whilst building the new stadium, he took me along a couple of times to see them play City. City won both times so he said he wouldn't take me again. It'll be interesting to see how the qtr finals go in the Champions League.

Have a good day, catch up again.

Cheers

Martin

Gibbo9
Posted by

Hi martin

 Sorry to hear that your son in law is a Spurs fan, that must be horrible for you, ha ha 

Ian Ure. Or what Nick Hornsby in fever pitch called and I quote ' the spectacularly useless Ian Ure', remember watching him, think they may have got him from hibs but not sure. Anyway, if reputation is anything to go by, the ball hitting him in the nuts probably constituted good defending. Arsenal had lots of mediocre players back then but titter ye not my friend, the thierry Henry stroke bergkamp team were amazing. They call them the invincibles but in truth they drew loads of games in that season but they were great to watch and Robert pires tends to get overlooked, he was amazing too.

Anyway talking about mediocrity Tony Book? What was that all about? Expecting a response from that observation Martin . In truth I wanted Liverpool to win the title this season but now please accept me as an honorary man city supporter. 

You asked me about my Buddhist past. Well to start with it irritates me when Buddhism is referred to as a religion? It's not, there is no godhead and especially in the west it is definitely not a religion. I was trying to recollect how I got into it. Not sure but think I attended a meeting of some sort but I dunno what flavour it was, Tibetan, zen, therravadan, I can't remember. Sorry, I'm not showing off using all those labels but there are different strands. I was a Buddhist for about 12 years then met my Christian partner who never liked me going to the meetings so it fell into disuse. In truth I was probably a bit soft with her and should have stood my ground a bit more than I did. In saying that Buddhist teachings are a bit bleak in my opinion, Christianity is a bit more optimistic in my opinion but I know a few Buddhist who would explode at the very thought of that argument. 

I must stop waffling. 

Did you have a good day today? Not long before your oncologists appointment, how you feeling about that or maybe you don't need reminding ?

Anyway, I shall definitely be here tomorrow and look forward, should you feel inclined, to hearing from you

kind refards

pete

Auldfarrt
Posted by

Hi Pete,

Cheek, Tony Book was "steady". I can't remember whether it was Joe or Allison that brought him in from Plymouth, I think. He was pretty mediocre but he must have made a good captain because he held for a good while. 

You're accepted as an honorary City supporter, as long as you don't put the mockers on them. My son's a Liverpool supporter - where did I go wrong. I'm not sure how he ended up supporting them, I think it must have been a playground thing when he was at school. I tried to bring him up to support his local side which, to be fair, he did. When we lived over in North Lincolnshire we used to go and watch Grimsby Town, then we moved south, so we went to Wycombe Wanderers occasionally. Don;t go to see footie that much now, although our local side is Oxford United and we went to see them last Autumn when they played City in the League Cup. May go again, if possible.

Not a bad day. I was due to go into work for the morning but the Pariah Clerk got her diary mixed up so I didn't go in the end. So as it was her fault, she told me to put the 3 hours on my invoice. No problem.

An uncomfortable evening, I can't remember whether I said when they did the PET scan they noticed I had a hernia as well. Anyway, that was playing up a bit last night. I don't know if I can get it repaired if I'm undergoing chemo I'll have to ask the oncologist next week. I'm seeing my GP tomorrow morning so I'll ask her as well, I expect she'll have to get me put on a waiting list. Other than that, a pretty uneventful day. Although, my wife went up to see her mother so I was left to my own devices for the day, after sorting out the granddaughter. We tend to eat the main meal at lunchtimes these days since all this blew up, and my wife doesn't like offal which I do. So I did liver, bacon and onions for my lunch and it was superb, not had it for ages. Fortunately it didn't seem to upset things too much.

In some sort of bizarre way, I'm actually looking forward to seeing the oncologist next week. She'll have the recent CT scan results and the echo-cardiogram results from January (having moved house, we changed health trusts so she had to get the echo-cardiogram results from the previous trust). So we can actually plan what they are going to do to me and when. I'm naturally impatient so having made up my mind (I think), I just want to get on with it now. I hope I'm mentally prepared for the crap that going to come my way. We'll see.

I think you said you were due to see your oncologist soon. Two weeks away is it? Or shouldn't I remind you? Maybe we can compare notes, in due course. 

Did you have a lunch (liquid) with your mate? 

Into to work this morning, if she's got her diary straight. So that should be OK. The year end was 31st March so I've got to start pulling that together, which I'll enjoy - sad sod that I am.

Anyway speak soon, all being well.

Cheers

Martin

Gibbo9
Posted by

Hi Martin.

I understand what you're saying about wanting to get on with it re: oncologist etc, it's funny how these things pull us this way and that way, the very best of luck my friend, I don't think I have ever wished someone good luck and meant it so much .

I had a hernia repair a few years ago so understand what you are going through with that one.They probably won't want to risk your getting an infection if you are on chemo when they operate to repair the hernia so that's probably a no go I would think but Not sure to be honest. 

I bought a euromillions lottery ticket, haven't checked it but thought if I win I can fly all over the world in search of a cure, mind you George Harrison did that, bless him, and it still got him. I also asked my oncologist if there were any trials going , that was nearly a month ago and he hasn't got back to me yet.

The lunch was OK yesterday, good to catch up with the old git. I am like you, have to watch the quantity I eat as I have no stomach?I tried to order scrambled egg on toast but they said no as it was gone 12. My mates wife wanted to intervene and make an issue of it but I couldn't be bothered so had a small brunch. Liver and bacon?Absolutely but only with the finest ingredients.

My local team is Torquay?seen em a few times, Neville south all signed for them and commuted every Saturday from South Wales , he was over 40 at the time, still had it thigh.

Been to Plymouth a few times too,, saw them play chelski years ago in a friendly, Vialli was in the stand opposite behind Ken bates and spent 90 minutes practically chain smoking, Dennis Wise was by far the best player on the pitch and my son, spent the whole match under the seat, I dunno why, he was only young.

Ultimately I just felt the football wasn't good enough to draw me back to either club

batteries going on phone

whoops

t.c

Pete