Not coping well

I'm Holly, and my mum was diagnosed with stage 3 oesophageal cancer on 5th July. My dad just told me on Friday, because me and my mum are so close she said she couldn't handle telling me. I feel at the minute like I'll never be happy again, the thought that she might not make it through is beyond devastating. She's the most amazing woman, she's so kind to everybody and is my best friend. I can't believe this has happened to her. I don't really know how to cope with it, I cry all the time and it's effecting my work. I just can't imagine being without her and it makes my chest physically hurt. She said she is going to be strong and brave and she wants to keep laughing and be normal, but every time I look at her I just want to break down. I don't feel like I'm being fair to her and going against her wishes but I just don't know how to accept it.

  • Hi Holly, my dad is eating better now and his weight is stable. I'm glad your mum has put on weight and is doing well with the fortisips, my dad couldn't get on well with the similar drinks. 
     

    Have you heard anymore about your mum's treatment? I found out that because my dad's prognosis is poor, both oncologists we have been to are refusing to give him anything more than palliative treatment. I had a massive conversation with the oncologist today but she wouldn't budge, I feel like they've just given up on him. In the US they give intense radiotherapy and immunotherapy for his stage/type of cancer, but England seems very behind in this specific type of cancer. I'm going to see if I can speak to some other oncologists to see whether they will give him a more effective treatment plan. 
     

    He seems to be doing okay at the moment, he's dealing with the chemo well.

    Ive just been to centreparks with my friends for 5 days. I didn't want to go but he was upset that I wasn't going to go and my therapist made me see that going was for the best otherwise he'd feel guilty. I had a nice time but I'm so glad to be back. I do have another holiday in England booked but I've cancelled it because he doesn't know about it. 
     

    How are you doing? 
    I've come across this clinical trial, you might want to look in to it: 

    www.cancerresearchuk.org/.../a-trial-of-pembrolizumab-for-oesophageal-cancer-keynote975

  • Hi,

    My mum found out yesterday that she starts chemo in 2-3 weeks, which will last for 8 weeks. Then 6 weeks after that she'll have surgery, followed by more chemo. They didn't say anything about radiotherapy so I assume that isn't happening now. She's really scared at the minute and worried about losing her hair. We're going to go wig shopping soon. I'm also going to see if I can work from her flat while she's having chemo because I don't want her to be on her own, especially if she doesn't cope with it very well. She hasn't been able to eat this past week so has started trying baby food.

    How are you doing, and how is your dad? Did you manage to speak with any other oncologists? I didn't know about the treatment in America, it's shocking really. Thank you for the link to the clinical trial, I'm going to have a look at that tonight. 

    I'm glad you had a nice time in Centreparcs. We all need a break sometimes! I have some time off work soon so I'm going to have a few day trips and try to relax. It's unfortunately the first week my mum starts her treatment so I won't be too far away. She wants me to go with her for the first session but I'm not sure if that's still allowed. Does your dad go with anyone?

    How is your therapy going?

  • Hi Holly, I'm so glad that your mum has the date to start chemo. I bet that's a massive relief for you and your family. 
     

    It must be awful loosing your hair, I really feel for her. Luckily it wasn't something my dad was overly worried about (probably because he's a man) but he does always wear a hat out so I think he may be a bit self-conscious.  I'm glad your mum has you to go wig shopping with and to be with her. 

    Unfortunately my dad has deteriorated a lot in the past few weeks. He's coughing much more, trying to clear his throat more, struggling to eat and drink more and is having trouble catching his breath. I think he's also starting to realise that the tumours aren't responding to the chemo and are growing, so he's very down at the moment. 
    I've spoken to two other oncologists but they won't give him anything other than palliative radiotherapy either. 
    I just feel like this is such an awful situation to be in and I feel so sad. I'm really struggling to concentrate at work and to be social. It's awful knowing the situation will get worse and I'll have to see him suffering, and then I'll have so much grief when he dies. 
     

    At the moment I'm trying to practice breathing excercises as I feel like they really calm me, and I'm trying to meditate more. I'm actually considering taking a course in breathing techniques at some point in the future because I feel it's been so beneficial to me. My favourite (I doubt this is an official technique, It's just what I find useful) is to breathe in for 4 seconds, hold for 4, and breathe out for 6 seconds. I'm not doing therapy every week as it's quite expensive and I think I got out all of my feelings in the one off session I had. I did find the session I had to be very useful though. 

    Unfortunately my dad isn't allowed anyone at his chemo, maybe your mum's hospital will be different though? 
     

    Let me know how you're doing 

  • Hi,

    Apologies for taking a while to reply.

    I'm sorry you've been feeling so low. How are you doing? How is your dad?

    My mum starts chemo on Tuesday so that's a relief (in a way). No one is allowed to go with her unfortunately so it's the same as your dad's hospital. She told me about the surgery she's scheduled to have afterwards and it sounds awful. The doctor told her there's only a 25% chance that it will all go right. I've not stopped thinking about it and I feel this huge weight in my chest again. I've been trying your breathing technique recently and it does calm me down so thank you for that. 

    We got a great wig for my mum last week so that's a big weight off her mind. It doesn't look any different to her normal hair which is what she wanted. It just seems so real at the minute and I'm in a bad place. Do you have any tips for what to expect with chemo? I'm working from my mum's next Wednesday and Friday but I'm not sure when she'll need me the most.

    I know what you mean about struggling to concentrate. Are you still having difficulty? I feel like work is just in the way at the minute, like I don't have the capacity to deal with it right now. My colleagues often moan about things which just seem so trivial and I wish I could tell them to just stop. 

  • Hi Holly

    My girlfriend has just had a bilary duct cancer diagnosis. About to start chemo. Not sure how it will go. My work has really suffered recently. I don't seem capable of caring that much. Someone was moaning about me not doing something and it took a lot of effort not to tell them to do one! I know exactly how you feel. 

    Mike

  • Hi Mike

    I'm really sorry to hear about your girlfriend. How is she doing? I hope her chemo goes well. My mum was ok the day after her first treatment (Tuesday) but today she's very sick. I'm here with her today. Have you found anything to help with how you're feeling? Our situation just puts things into perspective, I think maybe we all care too much about our jobs anyway but does it really matter? As long as I can switch off at the end of the day I can focus on what's actually important, like my mum.

    Holly

  • Thanks Holly. Sorry that your Mum is not feeling great. I hope she will feel better tomorrow. 

    I feel less bothered about work, possibly I had anxiety about what is to come with Samantha.  She starts next Wed.  I got jabbed for Covid today she has has had her Ct scan so we are all ready.

    Take care. 

    Mike

  • Hi Holly, I'm sorry I haven't replied in so long, my dad began deteriorating quicker and quicker. After the radiotherapy he couldn't eat or drink so they've given him a NJ tube that goes through his nose and to his lower intestine. His tumours have spread much further very quickly. He struggles to walk from one room to another now as his lung mets have gotten much bigger and are inspecting his breathing. The doctors have given him until Christmas but these past two weeks he's gone downhill so fast that I think it's more like a week. It's been really awful seeing him so ill. He was going to be considered for a clinical trial but now he's too ill. 
     

    How are things with your mum? Did the operation and chemo go okay? How are you coping? 

  • Hey,

    I'm really sorry your dad is not doing well. Is he able to stay comfortable? Is he in hospital or is he at home with you?

    My mum is currently waiting for her operation as she only finished chemo a couple of weeks ago. She did quite well considering but it was hard seeing her so poorly, like you see with your dad. It's the first time I've ever seen her look frail and it was really sad. 

    I'm thinking of you and sending love x