Long term coping

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I haven’t used the forum for a while because I think we have been so lucky with how my husbands diagnosis and cancer progression has gone. We were told in 2020 he had 12 months to 2 years because he was stage 4 renal cell carcinoma.  Fast forward 4 years and he is still here and relatively well. So what is the problem? I ask myself that every day.  Right now I just keep waiting for the other shoe to drop. Rationally I know this is normal because dealing with his long term prognosis is stressful and I know what is triggering these feelings but rationality doesn’t come into it at three am in the morning. I know I have been through a lot in the past 3 years. My mum was diagnosed with advanced lung cancer and passed away really quickly and I nursed her at home.  Our daughter was really ill with Covid and my beloved grandmother passed away, but I thought I coped really well. Recently though I feel really stressed and anxious. My husbands cancer has started to grow again and his blood tests aren’t as reassuring as they were. He had a repeat CT last week and being honest I am dreading the results. I feel I out on a reasonably good face to all around me but I find I’m snappy with everyone, the lack of sleep doesn’t help either. I have so many feelings and thoughts I just want to scream most of the time. I know my good friends husbands passing hasn’t helped as I see her and think, that’s going to be me soon. I have seen my GP and they increased my antidepressant’s but they haven’t helped the anxiety. We have both retired and I have two adult daughters living at home right now who work shifts and I am never alone to process things, although I don’t really like being alone as it gives me time to think, contrary or what? I don’t want to feel angry, but I do. I feel angry at him, at cancer and sometimes at the world in general and that’s what scares me the most. If this is the road to the end of his life I don’t want to feel like this because we have made so many good memories in the past 3 years ( the first year of his diagnosis was rough) I don’t want them spoiled by what I feel now. Is this normal, how have others coped with spouses with long term palliative care of a loved one? I just feel like running away right now . 

  • Hi  

    Janice has had cancer now for over 10 years. Her initial treatment was - eventful - I ended up doing a living with less stress course with Maggies 

    A big element was the learning to live in the moment - I was really good at coming up with worries about how I would cope in the future and could imagine things much worse than they actually turned out. The controlled breathing exercises were great too for helping me relax but also for when we got some disappointing news, perhaps that old saying of step back and take a deep breath. The transcendental meditation bit though did not really work for me.

    Recently I had issues at work too and something my GP suggested was some green walking therapy - fortunately we have a park fairly close to us so it was quite good to get out and listen to bird song.

    One thing we often see on here is carers talking about feeling selfish for taking some time to care for themselves, actually I find if I do not look after me I can rapidly become helpful to nobody and so it is really good for everyone.

    <<hugs>>

    Steve

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  • Thanks Steve, that’s very helpful I’ll look into it. I do use a calm app which helps but because I’ve not been sleeping I’ve had difficulty concentrating. You need energy to do these and I just haven’t had it. Since I posted I actually had a full nights sleep which is a miracle. I think writing it down was cathartic and helped. That’s what so great about the forum, you can write it all down and know there will be no judgement. I do have two dogs but we always walk them together, again I’m so lucky he’s well enough to do this but I do see I need time on my own. I think I’ll start swimming again, this is something I’ve always enjoyed but gave up. Again thank you for reaching out. It’s been really helpful 

  • Hi Riley2021, funny how you say you feel like running away. Since my husband's prostate cancer became metastatic in Apr 2020 I now get why people feel that way. You can never judge until you're in someone's shoes. That aside I relate to a lot of what you say. I am struggling juggling working and dealing with his illness which sadly has progressed and he will now be getting radium treatment starting in the next 10 days. It's like there are two ways of living, with illness and without it. One of my colleagues was saying the other day how they are looking forward to their holiday next week and have already booked their next one. I can't imagine what that must be like...it's like la la land to me right now to be in a position to do that.

    I understand you also saying you are being snappy. I found myself lately feeling more angry towards people about ordinary things..I don't feel angry at my husband but I do at the world in general and all the rubbish people moan about. I do my best to keep it inside but I still have these angry conversations in my head to vent. 

    There is a lot of talk about self-care. Tbh I struggle with that because no matter what we do the brutality of cancer will always be greater. I know that sounds very negative but hey it's how I feel. I exercise and eat as well as I can and try to get adequate sleep but you can only do so much. The pain of seeing a loved one ill is very hard to deal with as well as deal with the multitude of our own fears and sadness. You say you don't want to feel this way. I am just allowing myself to feel the way I do. I think it helps. Fighting that will only store it away in your body. I think it's good to feel the negative feelings and write them down as you do. Allow space and time for them. They are all valid. I send you hugs. I think we all need lots of hugs even if virtual.