The saddest day ever

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Today we found out that my husband is not for surgery as the tumour is advanced. It's the worst news possible. Feel numb and lost the one thing I clinged onto which was hope. How long we asked, maybe they knew but wouldn't say. Life's a bitch and the hope I had is worth nothing. why why why we had a life, we had plans, we had dreams, and it's all been taken away from us. We are young, we have kids, how do we tell them. I feel sick, sick of knowing that the best thing in my life is sick and it hurts.

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  • Posted

    It is a terrible situation, but you will find strength from unexpected sources.

    ​Sometimes patients respond well to the chemotherapy in these situations and it does make things a lot less difficult than otherwise.

    ​They tend not to predict length of time;  the onus is on you in a way to mak the very best of whatever time you have left together, whether that be weeks, months or many years, but it does take a lot of coming to terms with.

     

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    • Posted

      As if it couldn't get any worse. Today we go to the hospital again, but this time the cancer unit. We had questions, how long are we talking, I need to know. Reply less than 2 months if he doesn't have chemo? 6 months if he does.He really doesn't want to have any treatment, he doesn't want to be a weak, ill man, who he says will be a burden to us all. He doesn't want that. His in pain, his sick, his bleeding profusely , his tired, his given up. He talks about all the things his going to miss and never being able to grow old and see his grandkids grow up. See their 1st school play, put a pound under their pillow when their tooth falls out. His saying all this and it's life a knife deepening in my heart. My only wish was that it was me sad

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    • Posted

      There should be counsellors attached to the Cancer Unit, or perhaps a Maggie's Centre and you would both probably find that a session with these good folk would be really helpful.   Your reactions are quite normal, by the way.

      ?The other thing you might like to bear in mind is that hospices really are excellent places for helping you get the most out of remaining life, and are also very good at managing pain control.   The earlier you make contact with them the better.   It is their job to help you in these situations.

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    • Posted

      Thankyou for your message Alan. We have now been made aware that the prognosis is < 2 months. So I have a plan B as plan A wasn't an option, which was for him to do a sky dive for one last time. So next weekend I'm booking us to go to Devon or Cornwall for a few days smile

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  • Posted

    Hello Tina, so sorry for this news. I have to recommend brachytherapy as the first treatment,,I couldn't even eat but after 3 treatments I could eat and my tumour shrunk 60%. This gives you time to try chemo. Brachytherapy is done sound asleep so no pain. I took crushed up oxycodine in honey in very tiny doses. That enabled me to eat pretty well. Please find out why they haven't started that.

    All the best,

    Nancy

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    • Posted

      Hi Nancy.

      They haven't mentioned any thing about brachytherapy. They did a CT yesterday this time of his head. Today we are having 2 units of blood as his HB is very low, due to the bleed. His lost 4 lb in under a week sad we have both been put on 50mg sertraline as we having been coping at at well. He is having a PET scan tomorrow. And Thursday we are back to see the consultant. We have both been signed off work and not sure of anything. He is only 50 and I don't want to carry on without him. I'm scared for him, I'm scared of being left on my own. I don't want to be without him. sad

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  • Posted

    Tina having just read this made me feel so sad.  I do have massive problems with my oesophacus but so far for me it is a case of living with it and just hoping it doesn't turn into cancer.  You sound like a wonderful wife and mother just try and be strong for him.  Long felt life is a struggle but we have to somehow keep going I hope you have family around you to support you.

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    • Posted

      Thankyou Lois for your message.Well what a rolllacoster we have been on. To get told Trev has less then two months, to Thursday receiving results of pet scan. How can they of have put us through this emotional trauma.

      But the news is just heartbreaking. On Thursday we got told that the PET scan revealed that the cancer hadn't spread, next the consultant says it's treatable. I jumped up and said what did you say. We just bust into tears, she said with chemo and radiotherapy we are not now just going to give chemo as a palliative option, we are going to treat. We sobbed all day and the following day. We have been emotional traumatised by being told that it was a rare cancer, not operable, make your arrangements. TO u can be cured. Think my husband is still in shock. Y y y y y y put people through this without getting all the results back. The PET scan should be the first test after an endoscopy, why mess around doing CT scans. I know because life isn't worth carrying out the most important scan first £3500. I'm so upset with everything, the false information we were given. How can they one min say u have 2 months then the next min say we r treating u tonne cured. It's not right wr should rever of been told anything until all the results were in. But we are so so happy his alive, all we need to do now is get through the chemo and radiotherapy which isn't going to. be a breeze, but we will get through this.

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  • Posted

    Hi Tina,  

    i do understand what you are going through. I too have an inoperable easophageal tumour at the junction. My problem was that although the tumour was operable , because of other medical conditions I am not. I started a very heavy 5 week course of radical Chemoradiation 3 weeks ago today . I cannot swallow at all and take all my nutrition through a peg tube. Whilst the treatment is very hard, I know it is given with curative intent much as your husband. It is important that he listens to his body. Some days I am much like my old self , others very low but each day is a new one. If he or you would like to reach out ever, I am just a message away. Happy to share his journey and he mine. Stay as positive as you can but stay real. Big hug. Terry x

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    • Posted

      Thank you so much Terry. I really appreciate your message and as we are both going through similar,

      We could be a good support for each other x

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    • Posted

      Hiya How are you doing Terry.

      My husband has very similar to you. He has small cell in the junction from oesophagus to stomach. He is having 2nd lot of chemo Friday. He starts radiotherapy early December. How did the radiotherapy make

      You feel. I know everyone is unique, and side effects vary to everyone.

      It's just that I've had like 6 weeks off

      Work and have only just gone back to work on a reduced schedule,

      three days a week. But I'm thinking when he starts the radiotherapy,

      Depending on how he is,

      I may have to take more leave.

      Have you had a scan to see how if there has been any improvement to the tumour.

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  • Posted

    Tiny, how is he doing? If you need to talk to someone we have a friend who did lose her husband and they were super close like you guys are and it might be nice to have her to email?  I will give her your contact info if you would like.  She is doing okay but still misses him very badly.  Hasn't even been a year yet.

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    • Posted

      Hiya.Thankyou for your message. I'm so sorry to hear about your friends husband, I can't imagine what she is going through. I can't even think about that happening to us,

      I just can't. I think when his better we

      Will take some time out. We have been saying for some time we would like to drive down the west coast in USA.

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