No interest in my life, everything is so hard

I have a fabulous life. I live on a canal boat with my amazing husband and I've been able to 'retire' way before most people. I don't have pressures on me, my kids are grown and happy, and up until my diagnosis my life was filled with joy and I felt so lucky. But I'm going to start my proton beam therapy in a week and a half, and I've virtually come to a standstill. I don't want to go out and 'do' anything, I can barely force myself to take the dog for a walk. All I want to do is stay indoors and I'm beating myself up about it. I know I sound depressed, I'm on meds, but they've always worked before.

I've had to wait a long time for my radiotherapy due to my referral for PB therapy. I know my tumour has grown back after resection and I'm scared it's got bigger than ever and invaded my bone. I emailed my hospital contact 2 days ago but she hasn't replied and I just don't have the energy to hold a phone conversation. I don't really know what she could say anyway, it is what it is and words won't change anything. I guess I'm just in limbo. By the time my radiotherapy and chemo start I'll have waited 15 weeks since surgery and it's dragged. I know it was better to wait and have Proton Beam therapy because I have less likelihood of damage that will reduce my quality of life, but I'm just counting the days until I can get to the next step of treatment and hopefully be cured. I've been very positive and accepting of it all, but now I've just run out of juice. I'm trying not to feel sorry for myself (when I was last at the hospital I was talking to the dad of a 3 year old with a brain tumour. That gave me some perspective!) but I needed to just tell people who understand. We all know how that can help.

  • I know exactly how you feel. A shock diagnosis of cancer does cause mixed feelings. When I was told about my breast cancer in March, I took it well despite being surprised that I had it at the grand old age of nearly 81! The surgery which involved a lumpectomy and axillary clearance seemed to go well until I received the pathology results which showed that the lump was bigger than expected and more lymph nodes than the original three were cancerous. Then a bit of apprehension set in especially as I had a bad allergic reaction a few weeks later. My radiotherapy treatment has been delayed longer than I thought would happen because of the seroma under the armpit. However I am forcing myself to do the ordinary things I would normally do because my consultant told me to expect a long, cancer-free life! She told me that I am more likely to die of something else in due time rather than from cancer! I am holding on to that thought and although I know you are feeling low I think it should reassure you that life can go on

    Don't worry too much about the delay in further treatment. I am sure your oncologist knows what is safe so please continue your dog walking and enjoy the fresh air!

    Best wishes

    Anne

  • Offline in reply to afd

    Thank you Anne for replying. I will get back to being positive again, just not today! It's hard waiting and being in limbo. I just want to get going...but patience is a virtue...and dogs don't walk themselves, so I am on my way out! I'm glad you're positive again after your news and allergic reaction and I hope treatment goes well for you and you get lots more years of happy life. I will hold on to those thoughts too. Thanks again x

  • I have days like that quite often So don’t beat yourself up, it’s the rollercoaster of cancer/treatment. Sounds like your body is telling you to rest. I found it really helpful to just go with the flow. 
    I found when I had questions about my treatment I got better results contacting the Oncology Nurses. And I joined the local Secondary Breast Cancer Support Group. I found out about it through MacMillan. And I have asked for counselling. I love the massages:aromatherapy through my local hospice. Might be worth looking at what’s in your area. You’re certainly not alone in what you are feeling, tbh it would be weird if you didn’t feel overwhelmed at times. 

  • Be kind you yourself, you’d be a very unusual person if you didn’t feel stressed under these circumstances.

    Trust me, these feelings are absolutely normal in your situation. That’s why I get so cross about the “cancer warrior” rhetoric - that “every cheerful in the face of adversity” nonsense. EVERYONE gets scared, stressed and tetchy at times.  None of us choose this fight. Feeling forced to live up to stupid stereotypes isn’t helpful to any of us.

    Good luck!
    Dave

  • Thank you for this. I start treatment Monday so I'll definitely look into what's on offer. Aromatherapy massage sounds divine. I needed to get all that off my chest, but the rollercoaster has me on an  upward swing now, so I'm a lot better. And yes, I try to go with the flow, it's just that sometimes...

    Anyway thanks again and I hope things are going well for you.

  • Offline in reply to davek

    Thanks Dave, I totally agree with you about the cancer warrior rhetoric! I have friends who have said that they know I'll 'smash this' and to 'stay positive' and it just feels like extra pressure, like I'm not allowed to wallow  now and again! And that's why it's so great to have this forum to talk to people who actually know how it feels. I needed to express how I was feeling, knowing that id be understood. Now I'm past that and on the up, grateful for these replies.

    Good luck to you too ️

  • Offline in reply to davek

    Hi Dave, I just read your profile and what an encouraging story! I'm so glad you're still well and I hope your good health continues! 

  • Offline in reply to Beepa

    I’ve just been incredibly lucky … I wish I could say it was due to my personal grit and determination!

    A researcher at CRUK told me that the bog standard chemo was far more effective against my particular cancer than it was supposed to be - a random genetic twist. 

    Despite all the scientific advances, as a patient, it often feels like a game of Russian roulette. 

  • Offline in reply to davek

    Well whatever the reason it's great to know you got through it and you're well and enjoying life! I'm going for supplements and diet changes alongside my treatment in the hope of adding to my chance of getting cured. It makes me feel as if I'm playing an active part in my treatment rather than just playing Russian roulette! Just setting off for London as it happens. Proton beam therapy starts tomorrow. I'm glad to be starting treatment after a long wait and I'm feeling far more positive than I did in my original post! 

  • contact Macmillan or your oncology nurses to find out where you can get complimentary treatments (massage, reiki, reflexology. They are free as well