Cancer Research UK main site

I'm just having to live day by day not knowing how or what to do or ask and I'm doing it all by myself it's so lonely and I'm.scared

Parker1967
Offline

How do you deal with it I'm all over the place stage 4 oesophageal cancer no cure been in treatment nearly a year and now I'm scared what future I have if any . Immunotherapy of nivolumab is keeping e going but I'm alone and on this journey and I feel so hurt and let down. Misdiagnosis from. Gp.and hospital been fighting with them and they are now making my life harder by withholding pain relie cause I made a complaint... I'm so exhausted with it all need what fight I have left in me to desl with this disease  not the people that are supposed to be there to help. I thank the lord for st lu s and my oncologist and her team.  But palatine care is none existent and the specialist nurse assigned to me also none existent... the biggest trust I have just been referred to are hopefully going o help. And get some counseling.. what advice has anyone here got that might help please any advice is good advice whoever is on this journey  

  • Hello Parker and welcome to the Cancer Chat forum.

    I'm very sorry to hear about your diagnosis and that it is not curable. This must have been incredibly difficult news to receive but I'm really glad the treatment you've been having is managing to keep the cancer at bay.

    I really do hope the trust you have been referred to is able to get all the necessary care and support you are entitled to sorted out for you, but if you need any further information or advice, do feel free to give our cancer nurses a call on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. Our nurses are really easy to talk to and will do all they can to support you during this challenging time.

    Hopefully some of our members will be along soon to offer their support and advice as well but in the meantime, we're thinking of you Parker and want to assure you that you are not alone on this journey.

    Kind regards,

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Thank you for reaching out I really appreciate it and I don't really have a clue about what is available for me. I just get bloods done every 3 weeks then apt following to see if its OK to hsve infusion of nivolumab on the Monday. Then to scared to ask what's happening and then have ft scans every 2 or 3 months. I have used YouTube lots to holistically help with life style changes dietry and binal beats therapy but the pherifial neuropathy is now causing me problems and I have had a horrible time with the misdiagnosis and lack of support or care from that surgery..they have failed me in every way snd the pharmaceutical clinician has with held my pain relief... as I also suffer with osteoporosis Osteoarthritis rheumatoid arthritis and have done since child hood jia it was diagnosed back 42 years ago and degeneration has been traumatic with disabilities and mobility issues. I'm kind of at my wits end with it all and being an orphan. I'm not finding it easy to get the loving help and support most families give each other. So I finally reached out here after 4 bupa sessions of counselling to help with the diagnosis and shock from that. I'd really appreciate any help or advice on how to talk or open up and ask questions even though I'm.not sure I want the answers. I also have bipolar and add and neurological diversity I like to call it so sometimes struggle emotionally...

    Anyone that understands my situation I really would love to chat. 

    I'm only 56 and was so full of life and determination but this has changed me 

    I look forward to hearing back from anyone with your responses 

    Kind thanks Parker 

  • Offline in reply to Parker1967

    My cancer is moderately differentialated adenocarcinoma of the lower oesophagus with lots of letters and no.s following as I had been diagnosed with hyetis hernia 2002 gastric band put above it and never checked again by barisyric team. Even after telling then of night time reflux and what looked like cola in my sick . Then a clot gvt diagnosis and palpable lymphnodes in my neck and a Wright loss to 43kg they still didn't do barium swallow or endoscopy when repeatedly asked. Just kept making apts and cancelling them. It's been hell.lrms and pals involved with hospital and gp. But they all close ranks and do not and will.not take responsibility even though they have got rid of hp.who misdiagnosed me and wouldn't even do physical examination on me just kept giving antibiotics for her words suspected uti..even after rheumatologist asked her to as cells weren't right he had done bone scan and checked for mestateous nothing sinister found but he examined my lymphnodes and was very concerned..

    I am in Surrey they are just amazing but it's me I freeze from fear of answers I don't want but do want at the dame time. I suffer with neuro diversity and I have pherifial neuropathy from this all to. So as I was hoping to have a better quality of life things seem worse as I am also disabled through.osteo  arthritis osteoporosis and rheumatoid arthritis and was diagnosed as a child with it JIA ..because autoimmune disease I didn't have history due to orphan and so it's been a learning journey along the way. And I'm still having a terrible time with my health centre I'm at my wits end and there actually making me consider giving in and stopping chemo as this is not the outcome I was hoping for 

  • Offline in reply to Parker1967

    You hang in there Parker carnt begin to think what you’re going through l would really love to put my arms around you and give you a big hug you are stronger than you think you are sending you my love hopefully you get some good news night and godbless x

Speak to a nurse

Quick links

Follow us

Registered with Fundraising Regulator (logo)
Cancer Research UK is a registered charity in England and Wales (1089464), Scotland (SC041666), the Isle of Man (1103) and Jersey (247). A company limited by guarantee. Registered company in England and Wales (4325234) and the Isle of Man (5713F). Registered address: 2 Redman Place, London, E20 1JQ.