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 

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

Sorry for the slow response, I’ve been offline for a day or two. I was thinking about the loss of appetite as much as anything. Capecitabane really b*ggered up my taste buds - single malt whisky tasted like petrol! 

Oh that's a relief  Dave..haha I had a horrible feeling I was doomed from what medication and symptoms I'd mentioned! Thank u so much for clarification