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My husband, 30yrs. stage 3 Testicular Cancer 
Started by Fox4Lilly
11 Jul 2017, 4:48 AM
Hi, my husband and I are 30, we met when we were 16. Almost half of my life has been spent with him, and it feels like half of me is soon to be torn away. In late February he was diagnosed with cancer. He battles Testicular Yolk Sac cancer with mets in his lung and bones. This past Friday he had a seizure before my eyes. They found more mets in his brain. This is so awkwardly written, sorry for that. He responded well to the chemo and radiation, but that was all before the seizure. Everything inside me feels like it is preparing to face the worst. We are at the hospital now, hours from home, and as we drove away from the house I couldn't help but think about how different things will be when I get home again. 

I should say that while we struggle we are dealing better than most people expect, at first anyway. We don't wear fake strength or pretend everything is alright. We cry, get mad, and feel sorry about things together and then we move onto the next terrible obstacle his cancer throws at us. The obstacles are getting the best of me and I know it is getting to be a lot for him too. While we are honest when we feel hurt, I am starting to feel less positive. He is so strong, even after getting kicked back down when things were looking up. But, I read lots of forums from people who are in his position and they say they feel alone and I don't want him to feel alone. Or they get frustrated by their spouse. He has never been one to say no to me and, he is not always great at telling me when I have crossed a line. So I worry he is annoyed with me and won't say anything. He loves me fiercely and I him.

I just want to know if anyone has advise for me. I cannot get seeing him seizing out of my head because in that moment I thought he has dying. When it was happenin, I was sure it was the end. My heart is hurting. What can I do or what shouldn't I say. I feel like my he is slipping away from me and I am scared. Thank you for listening.
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Reply by KathCull_admin
11 Jul 2017, 1:41 PM
Dear Fox4Lilly
You have been through a lot in a very short time.  The seizure sounds like it came out of nowhere - and they are very frightening to see watch.  I am not sure about you but for me knowledge and understanding can help me deal with what life hands out.  Has a plan for care been sorted out or are you still waiting on test results?  

From what you describe you and your husband know each other well and love each other. You are both doing your best in a very hard situation. 

Are there emotional supports in the hospital you could get support from? Are there family or friends where you are now who can come by, talk, bring a meal, stay with your husband while you take a walk? 

It's scary - we are listening.
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Reply by JennJilks
12 Jul 2017, 11:27 PM
Hi there!
You are having a difficult time, no question. You must know that no one else could do the wonderful job you are doing. And you are!

You soundlike you are in a really good space. You are doing all the things you should be doing: being honest, and recognizing your emotions. 

This is a suggestion from the counselling degree I was working on. When you begin to think of his seizure, put it out of your head. There are many people who have more than one seizure a day, with certain illnesses, and it's not something that will harm your husband, per se! Know that.

This isn't the time to change the way you two interact. You've been successful so far! 
He knows he isn't alone, and that you will continue on with him.
There is no right or wrong to how you behave now. While his body is fragile, his mind, his heart and his brain are not. He's still the man you've know all your adult life.You need not be afraid. There are a great many professionals who will help you with the medical and bilogical aspects of this part of your journey. Ask them about the disease trajectory. This will help you understand what to expect physically.
You two are the experts in the psychosocial aspects of your journey and your relationship. You will be certain to do the best you can at the time. Don't be afraid of mistakes. Just do what you feel is right, and that will be the right thing.

All the best. take good care of YOURSELF, as well. 
Love him, continue to love him, and his frail body.  
Managing illness is frustrating. All you can do is keep him as comortable. I have often read about others feeling frustration, but that doesn't seem to be your case, as you both are realists. You are strong. You will get trhough this. Deep breath.
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Reply by Fox4Lilly
13 Jul 2017, 2:15 AM
Thank you both so much. 

I feel more encouraged and confident in myself.

Today he had another two seizures because of one of his brain tumours are bleeding a bit. I felt as though I was more able to be calm during the seizure. It is true, I reminded myself that there are many that live with seizures. As a result of his seizures today, a solid plan was formed and tomorrow he will start radiation of his brain. I just wish the seizures didn't cause him so much pain.

Every doctor (I lost track how many) visited and provided lots of information. As for the the disease trajectory, his cancer is complicated by it's quick growth, he is not able to walk because of damage the disease did in his bones (fracture on his pelvis and damage to his spine) and various blood clots, which he cannot take blood thinners for since his brain tumour is bleeding.

I have learned how to pull myself from spiralling into thoughts about him passing away when we receive difficult tests results, because the next test always seems to provide greater clarity. For him, his lung disease has remained the same or reduced, which even with his brain tumour complications, feels positiv. I am worried for when he is no longer high as a kite and comes to terms with today's events, we will see. 

Again, I am grateful to you both.

I will keep taking needed deep breaths and stealing all The hugs I can from him.

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Reply by KathCull_admin
01 Aug 2017, 11:53 PM
How are you doing Fox4Lilly? And your husband? 

Glad you are taking advantage of the hugs - they are precious.
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Reply by Fox4Lilly
02 Aug 2017, 10:47 PM
Hello Katherine,

My husband and I are doing well. He was discharged from the hospital after his 10 brain radiation treatments (5 full brain and 5 boost targeted treatments). He is on medication to hopefully prevent more seizures and we are now waiting. We know he will have his right lung removed (they are hoping to keep the upper lobe), and he will also have a complicated hip surgery in his future. All of which depends on weather or not his bloodwork continues to indicate that his cancer is controlled.

No one seems to have a prognosis for him, which is terrifying and somehow encouraging. Some doctors have indicated that someone with such wide spread and aggressive cancer, especially when cancer that spreads after chemotherapy treatment, does not have a favourable prognosis. While other doctors have said that because his lung tumors have stopped growing or have even descreased in size, that if they can control his brain tumours his outcome could be more positive. 

It does feel as though I am living in limbo, not knowing what could happen in a month (or tomorrow) is discomforting. He swam 14 laps in a pool today despite what his cancer has thrown in his path, he does not let it stop him. I am so proud of him, I would not be able to do this if he was not the amazing person that he is. It will be so painful to lose him (hopefully I do not have to lose him for awhile yet). 

I have learnt to live with nervous butterflies in my stomach and the quiet worried whispers that stay in the back of my mind all the time. 

Thank you for your thoughts, and listening to my worries.
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