Posted by Nadian on Sep 16, 2020 8:05 pm
I thought I would feel a sense of relief once the chemo was over but I am worried about this lymph node dissection coming up. Still a long road ahead for both of us.
Posted by Brighty on Sep 16, 2020 8:41 pm
Posted by Essjay on Sep 17, 2020 8:01 am
I remember when I was being prepared for chemo, the nurse told me ‘it will change you’. I didn’t have any idea what she meant at the time, but I do know I am different to the person I was. Like your husband I have physical changes after surgery, but also some long term side effects from chemo which I deal with every day. Mentally, I cope with the fear of cancer daily, memory issues that really frustrate me sometimes, concentration issues, but most significantly my attitude towards life and death has a new perspective. I have no idea if this was what the nurse meant, but I am changed for sure.
As Brighty says, is it depression in your husband that you are seeing? Or is he really struggling with fatigue? My husband doesn’t talk to me about his feelings much, but during my treatment I had the support of one of his friends who would take him out camping every so often and bring his experience of supporting his sister through breast cancer to encourage him to talk. I don’t know what they talked about, but my husband would come back from trips more relaxed and sometimes he would open up to me a bit, and that brought us closer. Does your husband have friends he could spend time with?
And how about your mental health? What do you do as self-care?
Your husbands team will give him a break between chemo and his surgery, and then he will have a break before radiation. Could you plan a break for the two of you? I know travel is a challenge with COVID, but there may be something you can do to make a holiday for both of you, or do some of the things you liked to do before. His taste buds are going to recover pretty quickly so he will be able to enjoy food again, and his energy levels will start to recover.
Have you accessed the psychosocial supports at your cancer centre? They are available to both of you. Talking through your worries and feelings with a professional who understands what you and your husband are going through is really helpful.
How are you both doing today?
best wishes, Essjay
Posted by robegree71 on Sep 17, 2020 11:46 am
I don’t smoke, worked out a lot and bang.
I am not on chemo thanks to whomever but lost 24 kg which almost killed me. Couldn’t get the VAT procedure here, much less invasive and 2-3 days in hospital. They took half my lung and 10 days in hospital all paid for with cash because insurance at my age is over $1000 a month. I am a Rescue Diver and can’t do that anymore and just trying to golf again, working out kills me and the fatigue is unbelievably frustrating. Worry about cancer daily and never thought of it much before. I was a very strong man mentally and physically and not much scared me.
All I need to hear from my partner is how she is scared sometimes too. How she loves me and is afraid of being alone without me. Just what she is thinking. I don’t always respond and that doesn’t mean I don’t care or love you back. Unfortunately men are brought up not to cry and be seen as ‘weak’ so we struggle with saying those scary things because then we are admitting we are scared. !! You really don’t know what it is like with cancer until you have it.
I was talking to a male friend last week and I was waiting for my 4 month CT scan results. Terrified to see the report. I made a comment to him, which I am getting better at. He said, ‘ I know exactly how you feel, my wife had Breast Cancer 12 yrs ago and every year we go through that.’
I am never going to be the same, my job is to protect the family, can’t even protect my self now. You struggle with being a weak leader of the group now. You can be gone tomorrow and it doesn’t matter what you do. You don’t control anything. You worry about having a good sex life again. All things important to a man.
That person you fell in love with is still there and scared. Tell him how you are feeling and he may not respond, he may even put blame on you but doesn’t mean it. It takes a lot of time for this to heal , terrible disease for the whole family. Hang in, he’ll be back. He doesn’t want to where he is for sure. Keep talking and talk to people on here, so much experience to be shared here. If you know someone who has had cancer in their life, talk to them. See if you can get him to read some of the stories on here.
Hope this has helped and willing to talk from a male perspective anytime.
Stay safe, Bob.
Posted by Lianne_Moderator on Sep 17, 2020 12:54 pm
I am glad you posted. It is absolutely a safe space . I have been on both sides of this coin so I understand somewhat what it is like on either side.
Being a caregiver can sometimes feel helpless, and you can often be the recipient of the dark hours and the bad days. I watched my dad go through cancer and thought I had some idea of what that meant. Fast forward 17 years later and my own diagnosis and I realized I had no clue. I worried about my own situation but I also worried about what my diagnosis was doing to my partner and my family. There was a lot of weight on my shoulder, much of which was put on myself, not by my caregivers. A few years later, my mom was diagnosed, then my sister. While I would like to stop getting the chance to get better as a caregiver, I also learned we all go through it differently too.
Some excellent responses from others here so far.
robegree71 has given an excellent perspective from the husband side. Thank you robegree71 for sharing that perspective. I think you have so beautifully expressed the thoughts of a partner wanting to be that person they were before diagnosis. We all have an identity we assume or is assumed of us in a relationship and it can be difficult when we don't feel like that person anymore.
Continue to reach out as you need. We are listening.
Posted by vic777 on Sep 18, 2020 10:23 am
I'm with everyone else, without any doubt this is a safe place to express your fears, concerns or any questions, etc.
Although I now have stage 4 lung cancer, I want to talk to you about my partner who had a brain tumour and cancer. The same things happened as what you had described and I was devastated with the lack of love and compassion that my partner had suddenly lost. My sister had to keep reminding me that she was still in there, it was the cancer and all the medications that were screwing up her brain and thought process. I still remember how many times I would come home and cry, it hurt the kinds of things and the way that things got said, almost borderline cruel.
As a result the best thing I can say that I hope might help is that it will help you tons to realize that he isn't behaving this way because of anything that you have said or did, its the drugs and he doesn't even realize how different he has become. Hang in there, remember the love you had, its still there and you still deserve it.
Posted by Laika57 on Sep 18, 2020 11:47 am
Coming to vent here has been one way for me to retain my sanity.
my husband had what looked like a bad reaction to morphine, but could easily also have been a mental breakdown after his diagnosis, and hasn't been the same since. He has good moments, where he is almost normal, and others where he is a selfish manipulative b****** without noticing it. Really skirting mental health issues for most of this journey. Just had delirium for the last 3 months since his surgery, got better for about a week, and now he is back to caring more about jello than the hospital having lost his phone and ID...
be sure to get in touch with the social worker at the cancer clinic, they can assign you a counselor. Also, the ontario caregiver association has webinars on how to deal with stress and communication issues . And then there is the bounce back program as well.
Posted by Nadian on Sep 19, 2020 11:38 am
Thank you for your kind messages of support. Psychosocial resources are minimal where my husband is getting his treatment That is why this board is such a lifeline.
i will put into practice these great strategies that you each have shared.
one area where I am falling down is in self-care. COVID is a wrinkle for sure. But so far medication, meditation, yoga, counselling, and off-loading some tasks have helped only minimally. I feel better knowing this community is so supportive.
Posted by Lianne_Moderator on Sep 19, 2020 12:24 pm
So good to hear back from you.
I am glad you have found this community so helpful and we will continue to be here for you as you need.
Kudos for trying all those self care ideas. Minimally helping is a start for sure. Continue to seek out ways to be kind to yourself. Easier said than done I know.
With all that is going on in the world, there are some virtual psychoosocial options available now that might be worth checking out. You may want to contact our Cancer Information Helpline on Monday at 1-888-939-3333 to see if they can point you in the direction of those types of resources.
Please continue to reach out here. We are listening.
Posted by Laika57 on Sep 19, 2020 2:06 pm
Just wanted to point you to this webinar
it helped me quite a bit and raises some good points. There's also a good follow up about communication. And a whole slew of others...
in a nutshell, as it relates to self care, is identify why you're feeling a certain way, what NEED that feeling is making you aware of, and to find a (creative) way to address that need. I.E. if you are feeling lonely, ice cream or a bubble bath will not help fill the need for social contact. So while it is nice and all, it won't help as much as calling a friend and going out for ice cream with them would. Call it targeted self care 😉
For example, my anger is actually an expression of feeling helpless, because i have no information and noone is giving me reassurance. Yelling at the doctors vents the anger, but doesn't give them incentive to provide me with information (hospital policy prevents them from promising positive outcomes, so information on status and treatment plans is as close as i will get.). Maybe not the best example, acting less angry to get (only part of) what i need to be less angry is a tricky one...
Posted by robegree71 on Sep 20, 2020 10:46 am
I am in Mexico so couldn’t get back to Canada in a timely manner so had old style surgery, lost 50 lbs. almost killed me. So why me ? Never worried much about cancer at all, now think about it most of the time. Mentally you are taxed to your limit, drugs, confidence, is there a future ?
You need a strong partner for sure and have to focus on the little positives. I am alive, first check up was normal, blood and CT scan. I have yelled at my Doctor, sister and partner. Getting much better though.
Started working out at home which has helped me feel better about how I look plus burn off some stress. Our social life is much reduced because I am so cautious with Covid and having given up half a lung. One step at a time which is tough for me so finally learning some patience after all these years.
The anger is all part of this journey so it is ok and good friends and family will get it.
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