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Togetherness is one thing....

Togetherness is one thing....

Posted by Katrina on Feb 2, 2019 6:37 am

On January 21, I was diagnosed with recurrent lung cancer . On January 23, my husband was diagnosed with metastatic squamous cell carcinoma. I’m finding it kind of difficult to figure out what to do and how to process.  While friends and family have been supportive, they have no clue the effect this is having. Husband is a head in the sand kind of guy, doesn’t want to talk about it or know anything about his cancer, just let’s get to the next doctor appt and go from there.  So many people have said to us you must be positive, this is just a bump in the road, you’ll get through.  Seriously, what does that even mean.  I have found myself avoiding people because they just don’t get it and my husband won’t talk so I guess I just wanted to vent to people who would understand.
Thanks for listening and I already feel a tiny bit better.

Re: Togetherness is one thing....

Posted by cancertakesflight on Feb 2, 2019 7:42 am

Katrina‍ I'm sorry to hear about what you've  been going through. It's bad enough to receive your own diagnosis but to have your spouse receive a diagnosis as well, I just can't imagine. 

Unfortunately, your friends can't imagine either. The thing is, until I received my own diagnosis, I didn't get it either. Before my own diagnosis of breast cancer, I probably said the same things that I now know sound crazy. Since people don't know what to say they often say the wrong thing because they want to support you but don't know how to do it. You may have to tell people what you would like to see from them. I wrote this blog post that you may find helpful. Maybe you could share it with family and friends. 

http://www.laughterandcancer.com/blog/the-mysteries-of-cancerwhat-to-say-and-do

The other thing about cancer is that although there are things that are common, there are many differences too. Not all people deal with it the same way. I was a crying mess before I had a diagnosis but was surprisingly calm once I knew what I was dealing with. With my treatment plan, the chaos prior to diagnosis was gone and I could focus on going from having cancer to there being No Evidence of Disease (NED). 

Your husband may have a similar approach. He may not really want to deal with anything right now until there is a specific plan in place. Until that discussion about next steps, sometimes the cancer is not a reality. I can understand how difficult this might be if you are the type of person who wants to talk things through to deal with your emotions and the person you want to talk to doesn't want to talk...at least not yet and everyone else around you just doesn't get it. 

Fortunately, you've found this community where people will provide you with support and the information that you need as you move forward. There are people who have been caregivers and others who have had cancer themselves. Here are a few people who may be able to help you. 

jorolaACH2015Aly‍ 

Please keep us posted. 

cancertakesflight (Debbie)

Re: Togetherness is one thing....

Posted by ACH2015 on Feb 2, 2019 9:18 am

Hi Katrina‍ 

cancertakesflight‍ Debbie, has already said many of the things I would.

You are really dealing with three cancers: Your first, your recurrence and your husbands diagnosis. That is a lot to have on one plate.

I remember how lost I was after being hit with a recurrence myself. That took a long time to wrap my head around. Debbie is right, there is lots of support here on the site, and I want to suggest other resources for you as well. I found it very helpful to talk to one of the hospital social workers at one of the hospitals where I was being treated. Later I transitioned into group therapy where I could share with others that "get it" with what we go through.

Friends and family that have not gone through cancer themselves don't speak our language. Well meaning people don't know what to say and don't understand what we go through emotionally, physically and mentally. Do your best to let those comments roll off your shoulder, and discuss your feelings, concerns and fears with those of us that understand.

Your husbands way of dealing with his cancer concerns you. But I wonder, is his response to his cancer and his way of dealing with it similar to other life vents he has experienced?

I imagine its very difficult for both of you. You're wanting to talk and his head in the sand can create stress. Have you tried letting him know that his silence is hard to deal with?

Perhaps writing your feelings down and letting him know that you are there for him, and you want to understand what he is going through will help him communicate better. As well. let him know you love him and you want and need to share support for each other. Its give and take, its a difficult time or both of you as individuals and as a couple.

Communities like this, social workers, group and individual therapy are all excellent ways of getting through the many facets of cancer.

You aren't alone, and you've already taken the steps needed to gain support for yourself and your husband.

Keep well and keep in touch

ACH2015 - Andy.

Re: Togetherness is one thing....

Posted by jorola on Feb 3, 2019 7:55 pm

Dear Katrina‍ 
I fully agree...togetherness is one thing but this.....holy crap a duck. I am so sorry that the two of you have having to double time it.
Go vent, vent away! You are totally welcome to do that here. Here you will meet many supportive people who do get it. With any luck we might even get you to crack a smile and laugh. Goodness knows you could probably use a good laugh right about now.
Many people struggle, heck they freeze like deer in the headlights when you say you have cancer. With a double whammy like you have it is no wonder the typical phrases come out. Still I am sure most of your friends and even family do mean really well they are just so scared to say the wrong thing. .But no they do not know and that's a good thing however I know that doesn't help you in the end though.
My hubby wasn't a big talker about his cancer. He just sat back and let the dr do this thing, having complete faith in him. Actually this was a good thing. See he has severe peripheral arterial disease and up until his cancer diagnosis has flags on his hospital files as a "problem patient." He had zero tolerance for incompetence and his medical history had been filled with it to the point where his was permanently disabled from the drs and hospitals mistakes. His specialist actually admitted to this. Anyway your hubby may also be sort of de-sensitized a bit - having been through this with you already.Just a thought. I could be totally wrong too. You said squamous (stupid squamous - hate squamous). Does he know his stage and treatment plan yet? I am assuming stage 4 as it is metastatic? Where did it start?
I would always just have little talks about his cancer with my hubby. Sometimes they would be 5 mins, sometimes they would be 2 hrs. I would always keep my voice soft and gentle and just talk about various things. Like say what the dr said at the last appointment. I'd ask what do you think about that? Sometimes it would be tougher ones like" i know we don't want to talk about this but just in case I want to ensure I do your funeral the way you want it so tell me..." Again always soft and gentle. But that is how I did it. I am not in your situation where both of you have cancer nor know you or your hubby. You do. Trust yourself on knowing what is the best way of having a productive conversation with your husband, if that is what you are searching for.
Know that you are most welcome here to come vent, cry, talk, laugh and even listen to others. Like I said, here is one place where for sure there is going to be someone on here that gets what you are saying. It is a relief when you meet that someone who gets you, isn't it?
I hope you keep in touch. Let us know if there is anything we can do to help.
Jodie

Re: Togetherness is one thing....

Posted by Katrina on Feb 3, 2019 8:37 pm

Thanks Jodie jorola‍ ,  I actually just feel better getting things out. I think in some bizarre way I am trying to protect our family and friends by not talking to them about the situation. It seems easier to talk to you all of you.  We are in the beginning stages with my husband, some testing has been done and we see the surgeon on Tuesday. Hopefully will have some answers then.  Most of my tests are complete except for a PET scan which I have to wait until March for the first available appointment.  I’m finding the waiting very difficult and it does make me angry that things can’t happen quicker. Although my doctor has already told me that if the scan shows no cancer anywhere else that they can do surgery to remove another lobe of the lung. We haven’t really gone to the place where there might be more cancer, sort of a “cross that bridge” thing.  Anyway, I’ll probably post later in the week when we have more info.
Thanks everyone, Katrina


 

Re: Togetherness is one thing....

Posted by jorola on Feb 4, 2019 2:51 pm

I get that Katrina‍ . Just being able to get it out without feeling the need to protect someone and their feelings is one of the big reasons I reached out to online groups.
Sounds like there is good news for you. May good news be on the horizon for hubby. Until then yep waiting sucks. We are always here when you need us. Please let us know how you two are doing!