Stage 4 Esophageal Cancer

Hi Auldfarrt. 

Cant believe that's your real name!

I have sent you a friendship request in case you would like to communicate privately or even have a chat on the phone at a future date. 

I am in exactly the same position as you and believe me it is ok to feel sorry for yourself.

I get all sorts of responses from people but ultimately no one knows what to say and nothing anyone says is resonating. Maybe this adds to the sense of isolation, the sense of feeling alone although you are absolutely right, we come into this world on our own and have to leave it on our own

My ex- partner wasn't very good at dealing with this stuff and left last July just before I had my gullet removed in what was to be, alas, an unsuccessful operation.I saw the consultant a couple of weeks ago and he said the cancer was really advanced when they took the gullet out?

So I live on my own which makes it easier in a way as I don't have to put on a performance when I don't feel up to it.

I am waffling now, which I assume is allowed, so gonna sign off.

Do get in touch if you feel inclined

That said, I've got 3 kids and some good mates so I often have company

Best wishes

Pete G

Hi Pete,

It's not my real name, but probably an apt description these days. I'll sign off with my real name.

I'm really sorry that your operation wasn't successful, that's a real shame.

I was told that after a PET scan which showed that the cancer had affect a couple of lymph nodes, that they wouldn't operate as it would not be successful having got into the lymphatic system. That therefore left chemo as the only course of action. I've not started that yet, I've got another meeting with the consultant on April 10th to try and make a decision as to whether I go for it or not. 

When I was first diagnosed at the end of December, and was told it was terminal, and that if I had chemo. it would give me 9-12 months as opposed to 6-9 months if I didn't. I was thinking what the hell was the point of probably feeling absolutely rubbish (crap was the word that first came to mind) for maybe 6 months for the sake of maybe another 3 months. 

The longer I've gone on ( I was told that I had maybe 3 months to make up my mind) the more I've thought I might try it, and see what happens. They've said I can stop at any time, and that after 3 cycles they'll scan me again to see if it's having any effect. So we'll see. I think I've probably decided to give it a go because of my wife and kids (kids, huh, they're grown adults with their own families, I'm getting on for 70). Plus the fact, the medics can only predict on averages with things like this, so who knows.

Fortunately, two of the three kids live in the village, and and generally try and keep my mind off thinking about it too much. Trying to live as normal a life as I can. 

I think you can probably tell I'm feeling a bit more positive about things at the moment, but we'll see how long that lasts.

You take care, and good luck. If you want to "talk" more, no problem

All the best

Martin

Hi Martin and thanks for your post.

I hope you enjoyed your week in Spain. Apparently, the spaniards are developing a reputation for being anti- British , did you find any evidence of this?

Yeah the chemo, what to do. My Oncologist said exactly the same and I'm gonna do the same as you , that is have the first lot and see how it goes but I don't think an extra 3 months should be sneezed at. Ultimately when it's my time it's my time, that's the way I see it.

I have been really content today.

When I first got the bad news I hit the bottle and  started smoking again. Although I am still smoking I no longer drink in huge amounts. When I told the cancer nurse I was drinking heavily his exact words back to me were,' pete, whatever it takes'

I find that this disease is hugely up in the head. Every night before I go to sleep I say to myself that I am going to be here tomorrow. 

I have just had radiotherapy but it is only for pain control.

I know that the cancer is up to its mischief but my first goal is to get to June 8th so I can give my daughter away at her wedding.

We lose an hour tonight Martin as the clocks go forward. As if we can afford it!!!Ha Ha

I am 63 so only a few years younger than you. My best mate is 69 .

Take Care Martin, enjoy the rest of this beautiful day. 

Best Wishes

Pete

Hi Pete,

Spain was very good thanks despite my little self-pitying episode. We've been going to the same place at least once a year for the last 20 years, and the Spanish have always been pleasant and friendly.

I'm slowly getting used to the idea of what I have, although I've also got prostate cancer (had it for the last 5 years and it's controlled via hormone treatment). I have moments of reflection but generally just try to carry on as normal as possible. That probably won't be possible once I start chemo. but we'll see.

When I was first told I had this cancer, I was shell-shocked and struggled to believe it. Even now I don't think it's real. I can eat generally quite normally although I need to stear things I can't chew easily and just watch the portion size. If I find I'm getting "bloated" if that's the right description, I find that a can of lemonade helps.

We've a full house today as all the family are around with my two daughters cooking Sunday lunch for my wife (and the rest of us, I trust) and I assume my son will do the washing up (huh). 

Anyway, "talk" soon and take care.

Kindest regards

Martin 

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 

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

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. 

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

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.

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