So far he's wanted to just live life as normal and be positive which really is for the best. I find myself becoming emotional when we're having a happy or fun moments, thinking that what if this is the last time we do said thing. I suppose I'm wondering how people have worked at being in the moment and not becoming overly emotional.
It's distressing to my partner to see me so upset, I'm just not sure how to get a handle on my emotions. My partner and I are both in our early 30s and this was very unexpected, we've been talking about kids and our life and it all just seems to be crumbling. Any advice on how to enjoy the happy times would be appreciated, without becoming a crying mess.
@Waffles I'm so very sorry for what you and your partner are going through. So heartbreaking, just starting off your life with someone and getting this type of blow. I can relate, because I was about to be married a few years ago, when we were given the news my fiance had stage 4 esophageal cancer. I feel your anguish and pain . Im so glad your partner is trying to remain stoic and positive, and I believe it will serve him well while going through treatments. Cancer treatments have come such a long way in tbe last few years, and many members are living well with cancer , even advanced cancer if that should be the case here. Have you received any information yet from doctors that to make you believe there will be a bad outcome? does he have a treatment plan yet? Once a plan is in place, some of the fears and anxiety will start to lessen a bit… He will need your support , and you will need support as well. You will need to care for yourself in order to be a good caregiver to him. I hear you, oh do I hear you on the crying mess part…..I've said many times I could have filled an ocean with the tears I cried. And its ok to cry and get it all out. Hit your pillow and scream into it. I would always try not to cry in front of my partner if I could help it. Not always possible of course. This is when you reach out. Reach out to family, friends, and a counselor. The cancer center will have a counselor you can talk to , both you and he, as well as which ever family members feel they could use it. Support for you and him is best when the whole family and group of friends you decide to confide in work together to support one another and help out with whatever tasks need getting done. Both emotional and practical ones. Feeling alone with the sadness and the fear, and feeling like you have no one to turn to can feel like a very lonely place. Make a list of people and their numbers and have them handy when you are feeling in despair. Crisis lines, friends, family, anyone. Now as for living in the moment with happy times. That's a tough one and it takes a concious effort to keep the focus on the here and now. Sometimes I had to talk to myself in my head and remind myself he is here NOW and I'm d*** well going to have happy moment with him. No one knows what the future brings or how much time we ever have with anyone. Give yourself permission to be happy and enjoy those special moments. When you find your mind wondering, bring it to the here and now ….to THIS moment and how special it is, what a gift it is that you get to be with him now, get to be there for him, and make this time happy for him. It brought me comfort to know that even if this WAS the last few times I could be with him, (not saying that is the case with your situation) but I knew I was there, doing everything I can to make his last moments happy as possible and let him know he was loved. The present moment is all we really have. The past is gone., the future we dont know what it will bring. So all we really can do is try our best to be happy in the moment. Do fun things together and have many happy moments. You deserve it . I'm wishing you years and years of happy moments. I know from experience what a difficult and heartbreaking time this is. It's not an easy road but just know you arent walking the road alone. We are here to guide you, cry with you, listen to you, and offer support.
I read your post and I am sorry to learn of the situation. You need to give yourself some slack here. The news you have received is a shock and there is still so much information to come out as to the situation, complete diagnosis and treatment plan. Have you expressed your feelings to your spouse? Being honest with them may help stimulate greater understanding, as I am sure your spouse is still processing this news. As @Brighty suggested, social workers are not just for the patient. Reach out for some counseling, talk to family and friends and keep active both mentally and physically. News like this can cause us to freeze and keep ourselves isolated. Being on this site and sharing with others certainly helps us feel less alone and isolated.
I'd like to share a resource from the Canadian Cancer Society that may offer you some assistance: https://cancer.ca/en/living-with-cancer/helping-someone-with-cancer/caregiving/taking-care-of-yourself
I hope this helps.
@Waffles cancer sucks, doesn’t it? you‘ve been given great advice already and I don’t have much to add. My experience is as a caregiver for my mom. She died in 2021. It’s a hard thing to got through, watching someone else struggle. Doesn’t matter if it’s cancer or depression or a bad day at work. We all want to make it better for those we love. And then if it’s potentially life threatening, we want to make it better for ourselves too. @Brighty is right, focus on the here and now as much as you can. And @ACH2015 is right too, that you are at the beginning and who knows how it will turn out?
Take some deep breaths. Get outside. Don’t google anything related to cancer right now. Feel the love and support that we can offer you. You will get more information in the future and that will give you a place to start. Hang in there!
Waffles , as the others have said, it sounds like you’re in the very early days, and your reaction is normal. You’ll be sitting there laughing at a movie, and a dark thought will drift in like a cold, drizzling rain, and ruin the joy of the moment.
It can be hard to be kind to yourself, and even harder to hold it together sometimes. Like you say, you want to be stoic for your partner, but you get so very sad you can’t hold it in. A lot of people find a “bolt hole” like a trip to the corner store, or to the downstairs bathroom to “have a moment” when they need one. As a caregiver, you’ve going to have a lot going on, and it’s going to take a while to find a balance between sharing your feelings with each other and being strong for him. As a spouse, you need to do some of both and both are necessary. (My “patient” was my dad, so it was a different situation.)
Over time, I’ve tried a lot of mindfulness books and exercises to try and train myself to be in the moment and banish unwanted or scary thoughts. I was about your age, actually when I started that journey. One of the best authors I found was Jon Kabat-Zinn. He’s a Ph.D. In the US who has written two very good books that get mentioned on the site often: Full Catastrophe Living and Wherever You Go, There you Are (I have that one in hard copy and audio format.) Wherever You Go includes some guided meditations that really helped to ground me.
I also did a LOT of journalling in those years, and even today I keep journals for various things, from cooking to sewing. You might want to start a journal to record something you did to be kind to yourself every day and something that happened that made you feel grateful. You could have another book to write out some of your other emotions - that works for some people, too. Cancer Connection has a blog function right in the site, if you want to journal publicly, but I recommend doing something longhand - it seems to help you process things better, I’ve learned.
Reading a book or starting a journal could be the last thing on your mind at the moment, and if so, go another route that will work for you. I encourage you to be kind to yourself, and on the days where kindness is too hard to achieve, just do something that is “more gentle.”
#caregiving #emotions #mindfulness #journaling #selfcare
Thank you both for your kind words and suggestions. It helps being able to talk about this with people who have experienced similar things.
They've told us some basic histology things from the biopsy's and were supposed to hear later this week specifically what it is. I'm in medical school and could not stop myself from looking into what they told us despite knowing I shouldn't have. The most likely thing based on his presentation and what we do know from the biopsy is that he has desmoplastic small blue round cancer. I don't even really know what it is and hadn't heard of it before, but the outlook doesn't seem very good. At this point I've made myself stop looking into things as its just upsetting me more, and what benefit is that if its ends up being something else. I'm hoping so much for it to be something else. We've started looking at fertility saving options in the hopes that we may still be able to have children if the outlook isn't so bleak.
I think reaching out to supports will be helpful for me, my friends have been having trouble knowing what to say and my family doesn't actually know yet besides my mom who isn't helpful with how she tries to be supportive. We've been waiting to tell them until we have something definitive to say. I'm going to try and reach out to my local support groups to see if they have anything in person along with using this as a resource.
I have talked with my partner about how I'm feeling and he understands how I'm feeling, its just not helpful for him me breaking down every 5 min some days. I don't want to make it harder on him then it already is and will be, he says he just feels bad by how upset I am. I think talking about it with others and having a space to feel how I feel without him having to be my support will be helpful for both of us. Even just having messaged in here I feel better and was better able to cope this morning.
Any advice from anyone going forward on how to navigate both the emotional side and medical side of this? Neither of us have ever had to cope with something so serious, beyond looking into fertility options were mostly waiting on cancer care to get back to us now that the biopsy results are back (they just came back yesterday). Even being in medical school its very different being on the other side of the conversation and I want to be able to advocate for my partner when I can.
@Waffles hi again. I've never heard of this type of cancer so can't help on that one, but I can suggest calling the cancer info line . They have all the knowledge and compassion too. 1 888 939 3333. Looking things up just adds to anxiety sometimes and a lot of stuff on line is outdated. Oh ya, of course. My friends didnt know what to say either, and I hope they would never have to know of such things! My friends took me out as sort of distraction from the situation,which helped in itself. I'm so sorry your mom isnt helping the way she is trying to be supportive. She probably just doesnt know how either..its so hard when you've never experienced this to know what to say. Sometimes all we really need is a hug and someone to not say anything but 'I'm sorry you are going through this'. My mom was very supportive in her own way too but sometimes just said or did the wrong thing too. But I knew everything was out of love. Besides the oncology social worker, i saw my family doctor and basically told him I'm in crisis and he fast tracked me into a hospital day program. It was a group, plus a daily one on one with a social worker. The social worker gave me coping strategies. I'm so glad you are already feeling better this morning. I'll give you my 2 cents about both the emotional and medical side. I cant comment on the fertility stuff because we were in our mid 40s at the time and children was never on tbe table for us. He had a daughter from a previous marriage and didnt want more children, and I was already kind of old for kids. What I can comment on is what helped me get through. Medical: keep in touch with tbe medical team at all times. This includes all doctors, secretaries, nurses, dietitian, and social worker . The entire team. Communication, keep them aware of symptoms, ask questions, keep track of his weight, his diet, have a binder to call with emergency numbers, 24 hour nurses, chemo teaching binder if he needs chemo, a calendar for appointments, a calendar for medications to take and when….write down things to ask in appointments.. dont be scared to ask for second opinions. Sorry I know this is a lot. I would divide these tasks with other family members. I tried to take it on myself at the beginning but it was too much and I feel apart. As well, split up the driving and taking to appointments so you can have self care time. The thing is its impossible to do all this when you are in emotional turmoil. Here goes for the emotional. It's going to a wild rollercoaster and you will need support . Social worker, family, friends…..tell them what's happening and what you need. Do you need someone to take you out? A hug? A time out? Prepare meal or two for you both….drop off a care package??? I also had to give my workplace a heads up. I didnt want them to think I was some crazy lady who cried under her sunglasses all day. Sometimes I needed a time out to cry in the bathroom. I told the principal and vice…and they would find someone to cover me until I collected myself and could return to class. (Im a special needs assistant) . Work got my mind off things sometimes and made my life seem a bit normal for a few hours a day, but yes.. communication is key. Others were supportive Thats what worked for me, support, communication, being open and honest. Some people think they can keep it to themselves but eventually you will explode. And of course I need to mention I got a pet. Everyone on here knows about my Vinnie tabby cat. He got me through the roughest , toughest days. Made me smile and laugh where I didn't think it was ever possible again. I. so sorry you are going through this. I really wish I had the magic and could take the pain away from you. But ill do the next best thing, support and guide you so you arent alone.
It's good to know that posting here helps, and that you plan to reach out to your local support groups as well. Sometimes with friends we actually have to break the ice to get the conversation started. As you suggested, talking with others and creating some space may help both of you.
As far as navigating the medical side of this, having questions prepared and written down for consults will help you keep on track, and give you some control over the situation. I'd like to share a resource with you from the Canadian Cancer Society that helped me; https://cdn.cancer.ca/-/media/files/cancer-information/resources/publications/questions-to-ask/32099-questions-to-ask-en.pdf?rev=26f3c4a6d167438ca6180bab12fb0e91&hash=39C84E258A87131132C7205055DF449F&_gl=1*vbr72t*_ga*OTU1Mzc5OTkzLjE2NzM0NTExMTA.*_ga_23YMKBE2C3*MTY3MzQ1MTEwOS4xLjEuMTY3MzQ1MTE2Mi43LjAuMA..
As far as coping with the emotional side, your posting here and the ideas of reaching out to supports, friends and family will help you cope. Like I said earlier, this is so fresh and new, both of you need time to come to grips with what you've been told and finding some acceptance of the situation.
I had zero medical background, so it was a steep learning curve for me.
Your mom sounds like mine: she had some “interesting” ways of supporting you at times, but, you know, there was that one time when she surprised me, so you never know!
Thank you everyone for the kind advice. I think I will start journalling, its not something I've done since I was quite young but I think it might help, even for the future to look back on and help process. I'm also going to keep posting on different forums, I'm very glad this resource exists. Also @ACH2015 thank you so much for the link to that booklet, its incredibly helpful and I will be taking with us for future appointments. My dad has been going through kidney cancer since the summer and going to appointments with him half the time I just didn't know what to ask.
My mom means well but her set response when things aren't going good is that its happening for a reason, which I usually can tolerate but in this situation just makes me mad. I don't find it helpful thinking that theres a reason for this, I feel like life is just unfair and this is one more way of life showing that. I have tried to set this boundary and ask her not to say this, but now and then she forgets and gets into her old spiel. Honestly my family in general even once they know won't be a very good support. I think finding a local group therapy will be the most helpful.
Thank you again everyone for listening and offering advice, it has been very helpful to be able to have someone to tell these things who I feel actually understand. It feels very alone trying to share these things with friends and feel how uncomfortable I've made them because they just don't know how to relate.
Hi Waffles, I think the journal idea is a good one. I know when I write something down, and read it, there is more sense made of the situation. I am glad that the CCS booklet I sent will assist you. I used it myself to help get the questions I needed answered, and I am sorry to learn that your father is also dealing with cancer.
Sometimes our family and friends aren't the best at offering support, and we need to find groups like this one, or 1 on 1 counseling or group supports with people that understand what is involved with a loved ones cancer diagnosis and all that is involved mentally and emotionally. Keep posting here on the site, and you will find many that can relate and offer support and suggestion.
@Waffles I'm so, so sorry for what you're going through. And so young. I can't say that I have any advice to offer as I'm in the same boat as you in that my mum was just diagnosed a month ago and got her biopsy results today.
Have you thought about counselling for yourself? I'm looking into it as well in order to try to process everything and maintain some semblance of positivity.
Big hug and prayers. 💗
@Waffles - So many good ideas to help you cope from others already but I can tell you what helped me when I was feeling overwhelmed.
- Accepting that I can’t stop the pain but can manage it.
- Crying in the shower.
- Trying hard to not think about the future. Taking it one day at a time. Deal with only today so you don’t use up all of your energy.
- Immersed myself in my favorite things such as art and crafts or facials and pedicures whenever I could. Doing something that required my full attention was a break from the worry.
- The more we knew about diagnosis and treatment, the easier it all became.
- I joined a number of caregiver support groups. The most helpful was this one where I learned to cope with the stress of it all: https://ontariocaregiver.ca/scale-program/
- Wishing you all the best. We will always be here for your family.