Hello

  • 13 replies
  • 66 subscribers
  • 1078 views

Hi my name is Karen and new to the group, just got my news on Friday and I feel devastated as you will all know. I joined the carers group recently as my husband has stage 3C lung cancer. I was diagnosed 3 years ago with stage 3 melanoma which was successfully removed following 12 months of immunotherapy, unfortunately 9 months into my treatment it had to be stopped as I developed colitis and them polymyalgia. My scan follow up was Friday and got the devastating news it has spread to my lung and can't be cured now. My oncologist is reluctant to start immunotherapy again due to the previous reaction but has given me a week to have a think about it. I have so many questions I have when he calls later this week. I feel defeated already and terrified of leaving my husband to deal with his cancer alone. I just feel lost and numb, thank you for taking the time to read my story so far.

  • Hi Karen

    Sorry you have had to come here, i understand where you are coming from, in one aspect of your situation.

    I was diagnosed March 2016 with stage 4 lung cancer, and like you i did treatment, every three weeks, and last one was Christmas eve 2018 and my hubby got his diagnosis on the 20th December 2018, i was devasted, i thought this is not fair,, i never ever thought that he would lose his battel, though he did, will be four years this Sunday.

    I found strength from i have no idea, write down all you want answers to for your oncologist,.

    Would i start immunotherapy if it was me, i would really think about it,  it is so hard, and i really fill for you.

    How is your hubby doing and how does he fill regarding your situation regarding yourself,

    I just has to welcome you, and i hope others come a long, with better knowledge than i. 

    xx

  • Hi Karen so sorry to hear you diagnosis while your caring for your husband. I hope he is coping with all this and can also give you a bit of support . Good luck to you both.

    All I'd like to say, this is your body and your life, you know what you think you can take, it's uour decision  to make nobody else's . As Ellie  said make a list of all your questions. Have sombody with you, as it's a phone call put it on loudspeaker and they can take over with the questions if you get emotional and make a not of your oncologist answers. I find sometimes the answers go right over my head and out the window so my husband takes notes and butt's in. (Thank god). Sending hugs to you both xx

    Moi

  • Thank you Ellie, I'm so sorry your husband lost his fight. You will appreciate my situation and what a blow it is when both are going through the same battle. I'm still numb at the moment and my husband has just gone very quiet. We have an appointment with oncologist this afternoon, I feel we should make him aware but I don't want to intrude as this is his battle too. 

  • Hi Moi thank you, I agree I need to write everything down as nothing is going in at the moment. I'm currently reading the paperwork they have given me and the possible side effects. I find it difficult to make a decision until I have answers to my many questions and I can take it from there.

  • Good,I hope you get the answer you need and you make the decision that is right for you Pray xx

    Moi

  • Hi Karen (Chub's Carer), I want to welcome you to the Group! I went straight to Stage 4 Incurable Malignant Melanoma with spread. My oncologist found me a Drug Trial of a Target drug and although it has been a long hard road sometimes I'm still here many years later.

    Last month my husband was diagnosed with Bowel Cancer (no stage yet) and is currently in the Surgical High Dependency Unit after having a large part of his colon removed. So I can empathise with your situation. I hope your call with your oncologist went well and you got to ask all the questions you had written down. I started a notebook to take to appointments and wrote down questions & answers, I now have a Pile of them and I have started another new one for my husband! I wonder if you have decided whether to go ahead with more immunotherapy or if you have been offered a Trial or anything else!!

    As someone already said, only you after a discussion with your husband can decide what's right for you. All you can do is gather as much information as you can so you can make an informed decision. Please let us know how you are doing, we are here to support one another!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hello Annette my heart goes out to you, it's such a heartbreaking situation.  I've still to have the call from my oncologist, most likely to be Friday. I have started my list of questions and one of them is 'are there any clinical trials I could be eligible for ' 

    Your story has given me a little hope as I've had it in my head I might not see Christmas x

  • Hi Chubs Carer, Please remember where there's life there's Hope. I was told I would be lucky to see Christmas but would probably NOT see New Year 2014!!! I told my oncologist that I would see  New Year because we had our holiday booked for February as we always went away for 4 weeks at that time of year!

    We did go on holiday to Spain but for 3 weeks not 4 because I couldn't get insurance to go for 4 weeks!

    My dad used to say, "if you think you can't, you won't but if you think you can, you will"!  I think that's where I got my positive attitude from!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Annette this is certainly giving me some hope. I have a holiday booked for next August in Cyprus for my niece's wedding and missing has been on my mind and upsetting me so much. They spoke about cancelling Cyprus and moving it to gretna green this year, I said absolutely not but appreciated the sentiment. I am going to tell them about your story Annette and hope and prey x

    Karen

  • That is good. When I start to feel down, I sing (sometimes just to myself!) "Always look on the Bright Side of Life, ah, tee tum tee tum tee tum"! It always makes me smile! 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!