Hi from Geordie land

hello everyone,  thought it was a good idea to browse the forum now I've let my diagnosed multiple terminal cancer sink in. Hopefully I can contribute in some way or offer any advice I learn on the way thru my treatments. 

I was diagnosed with cancer about  2 months ago after losing 2 stone in a matter of months. there was no other symptoms at the time and came as a big shock. I'm totally not up to speed with all of the medical terms, etc, although I'm reluctantly getting my head around the situation I've  found myself in. I'm 56 married with a 14 year old daughter. i was a self employed chauffeur/ tour guide until I had to retire a couple of weeks ago. thanks guys Dean.

  • 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

  • Offline in reply to d23

    Hello d23

    I just wanted to send a huge hug and positivity to you and your family.  Im so sorry you find yourself here with your diagnosis.  This forum has been a tremendous support to me over the last 8 years.

    Do you have a local hospice, ours was amazing, they can do so much to help on your journey.

    There is a man who is on this forum who had a diagnosis of junctional esophogus cancer, called Davek.  His journey has been truly amazing, hard but so positive.  So much hope. 

    Im so glad to hear you have had a stent fitted, started chemo and are feeling alot better.

    I wish you the best and your family on your journey.

    Best wishes, take care  Leigh60

  • Offline in reply to Leigh60

    that's very kind and considerate Leigh. yeah it was a proper kik it the whatsits! didn't show any symptoms and only found out 2 weeks after the camera. you'll excuse me if I don't know the medical terms..im sure I'll learn. I'm a very positive lad and luckily surrounded by amazing love and support. I've had the most amazing trip in life and would never complain if I had to move onto the next plain. I'm a bit of a hippy so me and my wife have been living an alternative lifestyle since being very young, so I'm not hung up on striving towards a pension ill be lucky to complete. People like you will help me alot, I can tell thank you Leigh xx

  • Offline in reply to d23

    and yes I have a hospice locally and will be visiting as soon as I can. they already provided me with transport to the hospital and I will try and be a positive energy around the place once every ing has settled down. my life feels a bit manic atm tho ‍

  • Online in reply to d23

    Hi Dean and a warm welcome from me, so sorry to hear of your diagnosis i know how tough it is to take. Was told i was terminal aged 56, advanced prostate, 2 years ago. It's great to hear you have a wonderful family to support you and a positive attitude as well, which is so important, good to know your hospice is helping, their amazing, best wishes to you and your family and with treatment. take care.

    Eddie

  • Hello Dean

    I've read some of the posts that you've shared in the last day or so and I wanted to post to say what a great approach you have to the awful situation you find yourself in. I'm really glad to hear that you're surrounded by the most amazing love and support and that you've been in touch with the local hospice as well. All of these things will help you through whatever lies ahead. 

    I also wanted to let you know about another thread that may be of interest to you, and perhaps your wife, where quite a few members who have been diagnosed with oesophageal cancer, or who have a loved one with that diagnosis, have shared their stories. If you think it may be of interest to you then the link is here.

    I'm also going to tag in to my reply (hope you don't mind Dave!). I can see that Leigh has already mentioned Dave in their post and Leigh is right in that Dave's story is very positive. You can read some of Dave's story by clicking on his name where I've tagged him in and I'm sure he'll pop by before too long to say Hello. 

    It's great to hear that you're eating better after the stent was fitted a few weeks ago and that you're feeling better after the first week of chemo. Long may that continue! 

    Keep in touch Dean! We're here to listen and will offer any support we can. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • 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

  • Offline in reply to davek

    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.

  • Offline in reply to d23

    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