New member introduction

I have stage 4 oesophageal cancer. I was diagnosed back in 2015. At one point I was declared in radiological remission  but 3 months later I was at the other end of the of the spare trum when another PE Scan showed it had spread to 9 diffferent areas including other major organs. Despair and anger set it at that point and it hasn't much improved emotion wise. Eating and drinking is very difficult because of the main tumour so keeping myself healthy is a struggle every day. I'm on a variety of drugs from anti anxiety to morphene patches but it is a struggle. 

Currently on a chemo break after last scan showed an improvement in some areas but still showing a spread to other organs but unable to fully enjoy the break due to exhaustion, eating difficulties, stress plus a broken collar bone. I'm having to pay for my secondary treatment because, about £60K per 9 sessions of chemo, because one of the drugs is approved by NICE but deemed too expensive for the NHS to fund. Our savings are being hit badly and that adds to the stress. But this drug seems to have had a positive affect so will have to find some more savings for another course if my oncologist says it will help. 

Overall it's difficult to get my head round the fact that I'm dying but my wife and family have produced tremendous support. 

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    Hi Wolfie,

    Welcome to Cancer Chat, although I'm sure that you would rather be anywhere else but here.

    I am so sorry to hear about your diagnosis, but am glad to hear that your drugs are having some effect. I have had 2 bouts of primary breast cancer, the first diagnosed 7 years ago and the second the following year. I have also had quite a number of false alarms. My Mum, had breast cancer too. She survived for 12 years and it wasn't until her final year that she was diagnosed with metastases in liver, lungs, bone and brain. She went downhill very quickly in her final year and treatment was nowhere as good as it is today. Pain control was also ineffective. That was 20 years ago and although I am amazed at how much more advanced treatment is, I still live in fear of getting a secondary diagnosis.

    I feel for you and your partner. You are where nobody with cancer wants to be. I wish that there was something that I could do to help you, but sadly there isn't. I am glad to hear that chemo has brought about an improvement in some areas. Enjoy the chemo break and hopefully, it will continue to shrink things when you return to it after your respite.

    I too am on Morphine patches and anti-depressants amongst a plethora of other medicines and find that these do make you feel exhausted. I hope that you sleep as and when you need to. I don't think that I was awake much throughout the day for the first 6 years, but I didn't sleep well at night. My poor hubby took me out to cinemas and theatres to try and distract me from looking things up on the internet, but he had to keep denting me throughout the performances, as I kept falling asleep. I have cut down on some of my medication due to side-effects and feel slightly better since I did this.

    How did you break your collar bone? It sounds as if you have been having a really tough time recently.

    I can fully appreciate that it must be difficult to find things that you can eat and drink. What do you survive on? I ask because there is the partner of a patient with mouth ulcers who is struggling to find suitable food for her partner. You might be able to help her? Her name is Anxiousgf and she has posted under the heading of ‘Caring for someone with Cancer.’

    I am so glad to hear that you have good support from your wife and family and hope that you continue to make some progress with your treatment.

    Instead of dwelling on the terminal aspect of your diagnosis, try to make memories with your family, while you are well enough to do so. These are something hat they will treasure for years after you have gone. Do you have some good photographs of yourself with the family? These are also something that they will treasure for years to come. It may not be the best time to take photos at present, but they are still better than nothing.

    Please keep in touch and let us know how you are getting on. There is always someone here for you whenever you feel like talking.

    Thinking of you and praying for that miracle !

    Kind regards,

    Jolamine xx

  • Wolfie I am sorry I don't have anything advice wise to share with you as I am new to all of this myself but having read your post I wanted to say to you that I am appalled by how cruel this *** cancer is and I am sending my very best wishes to you and yours and I know that's not really any help at all but I too like Jolamine am praying for that miracle for you . very best wishes Sam

  • Does the chat site have specific pages for each of the cancers? 

  • Hi Sam, I'm still quite new to this and was wondering the same thing. Welcome to the site. Cissy x

  • Hi Wolfie,

    Sorry to cut in but I think I might help. 

    If you use the search engine on the upper left side at the top of this page named 'search forum' to insert the type of cancer you are looking for, it will show up previous posts on the topic.

    I hope this helps. But if you still need assistance don't hesitate in asking us.

    Best wishes,

    Renata, Cancer Chat Moderator

  • Hi Renata thank you so much as I am very new to the site and didn't know the answer. Thanks Renata and thinking of you Wolfie
  • Hi Cissy thank you for the welcome and I too am new but thankfully Renata has answered.  Thanks again Sam x