Hello Dean

Welcome to the forum although I am so very sorry to hear about the news that leads you to find us. It's obviously an incredibly difficult time for you all at the moment but from your post, I sense there is some positivity in your mindset to hearing this diagnosis and undoubtedly this will stand you in very good stead. 

Can I ask what type of cancer you've been told you have? Hopefully, we can then signpost you to some information and possibly connect you with others who have a similar diagnosis and are undergoing treatment. 

If there's anything you'd like to talk through with one of our nurses you're most welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

Keep in touch Dean and let us know how you're doing. 

Best wishes, 
Jenn
Cancer Chat moderator 

hi jenn, 

thanks for the warm welcome and wishes. 

I've been diagnosed with lower food pipe/ stomach junction cancer. quite advanced and incurable. no chance of surgery just yet. was losing alot of weight and having terrible heartburn. so the tumour had reached the point of me not eating anything but shakes and soft foods. 

3 weeks ago I had a stent fitted so nearly straight away I was at least eating much better. now I'm 1 week into chemo and I feel alot better. 

Deann

Hi Dean,

I’ve not been on here for a couple of days - tied up with other stuff. 
Welcome to the forum no-one really wants to join. 
This is an awkward question to ask but has anyone on your care team actually used the word terminal? 
I ask because sometimes people interpret Stage 4 and inoperable as terminal. I certainly did when I was diagnosed with Oesophageal/Gastric Junction cancer at Stage 4. Apologies if this is an insensitive question. 

The fact that you’re starting chemo is a positive in itself. Good luck with the chemo, don’t hesitate to tell your care team if you start having side effects. I left it longer than I should have done and suffered longer than was necessary. 

Good luck!
Dave

Hi Dave , nice for you to reply..yeah theve mentioned terminal..was as subtle as a brick..just came around from the camera procedure and next thing I know the witch of doom was hovering over me with a satanic tattoo in my face saying its cancer, looks  incurable and terminal..nice. I'd imagined it was a cyst

You imagine some compassionate doctor telling you over a leather bound desk or something whimsical  haha..I'm learning tho..most other nurses have been my new angels of course cheers Dean.

Hi Dean,

I had a similar experience with the Upper GI surgeon - “your endoscopy showed a tumour, the biopsy shows it’s cancerous, the CT scan shows you’re at stage 4, it’s grown around your aorta so it’s inoperable and we can’t use radiotherapy. I’m referring you to an oncologist for palliative chemo. Without it you have 2 to 6 months, with it maybe up to 18 months. Any questions?” 
It was the Oncologist who said it is unprofessional to use the word “terminal” because there’s no formal definition but it usually means death is imminent - certainly within 6 weeks. Unless that word is written on any patient letters or your care plan ignore it - especially when filling in any travel insurance applications! 
It proved useful in getting my PIP claim fast-tracked by MacMillan, that’s about all. 
All that was in 2013 - if I’d believed the surgeon I might not have bothered with chemo and I would not have survived. 
In 2013, less than 5% diagnosed with OC at Stage 4 survived - my logic was that 1 in 20 survived, so why not me? At 55 I was younger than the average cancer patient, I had nothing else wrong with me and I was physically fit, so better able to endure chemo. Chemo was my lottery ticket which gave me hope. 
Survival rates are higher now than they were 11 years ago, but the stats are only released every 5 years so are always out of date.
Stats are great for predicting average outcomes for hundreds of patients but are worse than useless as a predictor at individual patient level. 

Good luck!
dave

Dave,

you and others who contribute to this forum are going to be a god send to someone like me. 2013?!  Wow, that's just what I need to hear, although of course I do realise everyone is absolutely independent when it comes to diagnosis & prognosis ( see.. I'm getting good at this!   ) I also understand survival is also totally individual and I'm not clutching at straws by any means....I would for sure have been ..at best pessimistic,  at worst dismissive about chemo. In life I'm touch of a conspiracy theorist and listened to many friends who "say" they would not put such toxins into their sacred bodies! All the while smoking roll ups and drinking home made mushroom wine!    . So I am what you might call an anti vaxxer.

Unfortunately, there was a letter saying "terminal".

I have other signs/ tiny nodes showing up in my liver apparently. (I'd imagine its in my blood )I would,like you, have struggled with benfits (ie a old railway pension 

we've found& macmillan for fast tracking things) The power of that word can be quite top trumping I've found  .

So my medication at present is..

1 monthly hospital visit to administer IV

Capecitabine 1300mg daily

Metoclopramide 30mg daily 

Ondansetron 24mg daily 

Zormorph 20mg daily 

For 23 days a month for 6 months.

Oramorph as and when required. (Not so much

as I find, you spend much time in life staying away from other horrible self soothing drugs only to discover its all bells and whistles (possibly even encouraged)to get into a Churchill the dog nod when it's terminal! )

I still haven't been given a departing time. I'm sure if I pushed or asked the witch of doom she'd have a fast track date in mind

I'm very much taking it 1 step at a time. The stent has been excellent for me,im slowly gaining weight and enjoying my food again. I was a qualified chef in classic French cuisine once, so not to eat was mental punishment.

My medication hasn't been a big deal at all..in fact quite the opposite. My humour is bordering on the ridiculous to the macabre. And I'm getting a brand new hybrid car in 2 weeks ! 

After years of living in buses, enjoying a free life in india for most of it, this is something I'm very excited about ! 

So Dave I thank you muchly.  I also realise you do this from the goodness of your own heart after 10 years! Indeed! Not all hero's ect..It also gains many karma points in Hinduism

Respect brother 

D

Crikey - that’s a real bummer. It sounds like you’re well organised.

What's a bummer Dave? The word terminal or the meds? I don't get you mate.  It's all a bummer to me I suppose 

My oncology team have always maintained its about containing, preventing and controlling  these/future tumours.so im not expecting a miracle but sustainable life is the aim 

And goa yeah. Our business was all in the North until my wife fell pregnant with my daughter then we decided to settle back in Newcastle. We went back last November to complete our house sale. It's unrecognisable to us now 

Guys I'm having the most intense  diarrhoea. Could this be down to the chemo? Before treatment I was having major constipation thru taking too much protein shakes, but it was the only thing keeping my weight on.

I am getting very concerned about the morphine medication.  After only 10 days I was using it as a crutch for quick cancer pain relief. I'm not impressed with my behaviour and was beating myself up out it ,so Yesterday decided to have a full day off it all..pills and liquid. I was doing fine then I started with the toilet visits..12 times later and I'd lost alot of fluid and was very concerned bout salt loss so I had electrolyte drinks to compensate. Still within 10 minutes of consumption I'd be on the toilet evacuating everything. I had no choice but to revert back to the morphine based ds. Within 30 minutes my bowels settled down and the gas and pain significantly reduced . This is terrible news for me. I feel horrible, sleepy and groggy on this medication.  Can anyone advise me a alternative please  thanks D

Hello d23

Your post is hard to read with all your suffering, Im really sorry to hear this.  Im not sure that I can help with any advice.  I remember my husband was given a synthetic morphine, I think it was because of reactions to morphine,  I think a lot of thngs my mind shuts down on.  I hope others come along and can be of help to you.

I would say though that you can call the Nurses helpline on this forum for advice.  

I hope this is resolved quickly for you d23,

Take care.  Thoughts and best wishes to you Leigh60

Hello d23

Your post is hard to read with all your suffering, Im really sorry to hear this.  Im not sure that I can help with any advice.  I remember my husband was given a synthetic morphine, I think it was because of reactions to morphine,  I think a lot of thngs my mind shuts down on.  I hope others come along and can be of help to you.

I would say though that you can call the Nurses helpline on this forum for advice.  

I hope this is resolved quickly for you d23,

Take care.  Thoughts and best wishes to you Leigh60

Leigh I thank you, 

The suffering is nothing really, im expecting things to get alot worse than this. I don't know why, but you imagine to be bed bound, exhausted, lifeless even. So, im super glad it's just a bit of pain and toilet trouble! 

I did in fact call my care team and they informed me that if I stop using morphine sulphate then I also have to halt treatment on all fronts. I explained that I'm already using it as an easy go to pain killer, they replied that's the whole point! So I'm back using again and it has improved my situation even tho im a sleepyhead within 10 min. I'm just going to take the zomorph 10mg less per day.

Thank you for the support  leigh,  I was getting a little paranoid that I might have said the wrong things in previous posts because it went a bit quiet on the replies for a day lol.. 

Dean