I am taking care of my dad who has stage 4 lung cancer, his cancer spread to his brain. He just finished 2 weeks of whole brain radiation. The prognosis is not good (6 months)… I am so broken by this news. I am a 32 year old who just got married a month ago. I know we all have to go one day.. It's never easy.
I have been doing hours of research for the second line drug he will be put on which is called Temozolomide. It's a drug dad will take to control the cancer in the brain. I hope dad has some time. Anyone has experience with this drug?
Also, I want dad to get a second opinion at Princess Margaret Hospital. The referral was send this week. Does anyone know how fast do they respond back?
Can anyone tell me how to cope? I am trying to be strong for dad and have a brave face. But, I wont lie I do cry in silence.
@sarahelpingdadfightlungcancer I'm so sorry for what you are going through. Anticipatory grief is the pits!!! I'm not familiar with this drug, so I can't comment regarding that.. hope someone else can chime in there. I'm also not sure how long princess Margaret takes to respond. but I would follow up with them on Monday . I admire you so much. Your love for your dad and the way you take care of him is so admirable. It's hard to imagine losing a parent. Its devastating, and there's no way around it. Some days I dont really even know how I got through anticipating the death of my fiance. Half the time I was in denial. Then I tried compartmentalizing my life. Work was work, outings were outings, I had to keep my routines to the point I became OCD about them because I lost control of everything else. I HAD to go shopping at 430 pm on Fridays or the world would end…I HAD to have dinner at 6:00pm. If it was 6:01 the world ended again. I had to have control over something!!!! I watched the dumbest tv shows to get my mind off my troubles, hallmark movies, soaps and reality shows. I watched videos of my cat Vinnie whenever I thought I was going to break down at work…i gave people the heads up at work about what was happening so they could give me space and time to cry in the bathroom when need be. I needed my private space to cry. I could not cry in front of my fiance because I had to be brave at all times. But after he went to bed, I cried myself to sleep every single night. Some people like to keep things private . For me, the best way to cope was to be open and honest and have that support from others. To keep something like that inside would have killed me. Set up your support system NOW…so you have that cushioning when the time comes . The worst feeling for me was the feeling of thinking I'd have to be alone with this pain. Once you have that cushioning to land on, and a therapist in the ready, good friends and family you know you can lean on, it wont be as hard. Spend as much time with your dad now, make as many memories as you can. Know you did everything you could to make him happy and comfortable in his last days. That will bring you comfort. After my fiance passed, in some ways it was a relief. The suffering was more than I could bare to watch. He is now out of pain, and that too brings me comfort. I wish you strength, and know we will always be here to support you.
I found a thread of posts on the site that discuss Temozolomide. https://cancerconnection.ca/discussions/viewtopic/12239/68943 To search information, type a word into the search bar, click on the magnifying glass, and any matches will appear.
As to coping, we all need to seek out and try different tools to help us cope. There is no one size fits all answer. Like you, I found doing research and understanding the situation gave me some level of control and helped me cope with my situation during diagnosis and treatment, but remember for the individuals circumstances, the specialists are the ones to seek information from. Remember that each persons experience with treatment will be unique in efficacy. I found this link from the Canadian Cancer Society helpful. It's suggestions are good reminders for caregivers to seek out means to keep healthy and reduce stress: https://cancer.ca/en/living-with-cancer/helping-someone-with-cancer/caregiving/taking-care-of-yourself . Expressing yourself here and with family and friends can help us relieve stress and be more accepting of the current situation. Simple things like going for a walk and seeing sights outside can help clear our heads for a while. I hope this helps.
I am so sorry about the passing away of your fiance. My heart goes out to you. It is never easy. Loss is so hard. Thank you for being a good friend and always replying to my messages and giving me hope. I stopped seeing my friends and deleted all my social media accounts just to try and focus on dad. The thought of losing him one day really scares me. I have my husband as my support and my close friend. I am so grateful for both of them for being in my life. I keep crying in silence, tears just keep coming down. Dad will see a palliative doctor next week so I need to be strong for him. I always tell dad you're strong no matter what. Dad is positive, he goes on his daily 1k walk and tries to be active as possible.
I know the next days or months coming will be hell. But, I am really to be there for dad and make him as comfortable as he can be. This journey with cancer is the worst pain a person can feel. I can only imagine how dad is feeling but the family suffers ALOT.
Your advice is absolutely right. I am glad I have the support but a therapist is something I have been thinking about lately..
But, I am hopeful. I will do my best to get as much information for dad. The rest is up to God.
How are you coping now?
I hope you're doing okay. Thank you for always giving me great information. I looked into the website and it was very helpful. I really appreciate it. I have spoked to Lung cancer canada about the clinical trials that are available as well. I am trying my best for dad. But, I must take care of myself too.
@sarahelpingdadfightlungcancer hi Sara. I admire your devotion to your dad….its wonderful. But I would advise not to stop seeing friends. Caregivers need to care for themselves too……and you will need those friends and all the support you can get. That's what I meant by compartmentalizing my life. Work was one part, outings with friens another/ …errands another…..caring/ was just another part of my life but not tbe whole thing. If the caring part consumed me…..i would not have survived. I had to keep some normalcy going in order to get through. Although even when I kept the normal parts going, I always thought about my fiance. He was never far from my mind. I had a therapist all through his illness who emphasized self care. Before that I used to think it was selfish. But its absolutely essential to survive. I would suggest perhaps going to your family doctor and getting a referral to a therapist ..it takes a while to get one so if you get tbe process going it will be one form of what I call ‘cushioning ’ when the blow comes. You may also want to look up some places where you can get grief councilling. The oncology social worker can also help with that. I'm so glad your husband is there for you and your close friend. I agree, this journey is hell, and everyone has his/her own way of coping. I cant even begin to imagine how my fiance suffered. He shut down and never communicated with me much after his diagnosis. We were a cute little couple before cancer . We always walked hand in hand….could talk and laugh for hours..cancer totally took him away….mind body and soul. Thanks for asking how I'm doing. I'm ok now because it's been 4 years. It sounds cliche but its true.…time heals. The first couple years were rough. I was angry at the world, guilty for not doing enough….we always think were not doing enough…..but all we can do is our best in the situation. And i didnt even know why I'm still here. But slowly the pain lessened . And because I kept those other parts of my life going, work, friends, family, supports, therapy, i had those to fall back on. I had my beautiful tabby cat Vinnie who laid by my side and purred while I cried. He is a feisty little guy but is alway there for me. So my life is kind of like back to how it was before Dan, except with a huge empty hole. Lately I've been really wanting to talk to him. So many things to tell him. So I talk to his picture to still include him in my life. You will always be able to include your dad in your life . You can write to him, talk to his pic…or how ever you want to include him in it. It's hard. Very hard…. But you will get through it and be able to remember your dad and all the wonderful times you had together. For now make memories, enjoy your time with him and the love you share. We will always be here to support you whatever happens .
Hi @sarahelpingdadfightlungcancer Sara,
I'm glad the information and suggestions helped you. Finding some balance between helping your father and looking after yourself is so very important. You mention talking to Lung Cancer Canada regarding clinical trials. Has the oncologist suggested any trials your father may qualify for? Something also to ask when you have your consult with the 2nd opinion oncologist, along with other potential conventional treatments.
I'm sorry to read of the difficult journey you are on right now with trying to care for your Dad. It may seem like an uphill battle most days, but I was caregiver for my late wife for 5 years, and I found that there were a few things that really helped. I had some good experiences with my late wife during those years, believe it or not. One thing I would do was to “make every day special,” and I would look for some little way to help her, make her more at ease, do some little thing for her to encourage her. The big things that seemed to make her the happiest were usually little things. Every day I would find some “island of praise” is what I called it. Just some way to focus on something I/we could be grateful for. We both found that gratitude was like a tonic. More than once a day, I would tell her I loved her, and sometimes that was all it took to make a given day special. I guess what I'm saying is to say and do things now while you can. Because making memories was a good experience for us. I hope you will keep us posted how things are going here. You have come to the right place to get support.
Your words are filled with so much positivity and wisdom. I am dreading dads appointment with the oncologist tomorrow. He will be discussing treatment options for dad. I feel like going out or being around friends is selfish and that I should dedicate my time to dad only. I feel like there is this cloud over me ever since dad got diagnosed. My dad isn't the same. He was full of live and positivity. Once he heard he has cancer. He completely changed. He doesn't talk much or he is always sick. Cancer really changed my dad. It breaks my heart to see him like this. I know that this journey will be tough and that I need to be strong for him. I will try to make as much memories with dad and be there for him. Tomorrow is never promised either.
You're right, time heals. But, its being in the process of it that hurts. I am glad to hear that you're doing okay now. Stay strong my friend. Proud of you.
Thank you for your kind words. It gives me comfort reading your message.
I am sorry to hear about the passing of your wife. Loss is never easy. I hope you're doing okay. Yes, each moment is precious. Thats what I am doing everyday, is making each day count. Even when dad isn't feeling well, I try to give him comforting food or make him comfortable. Dad is not the same since he got cancer. He lost his year twice in one year. Cancer spread fast. It's so heart breaking. But, I will remain strong for dad.
@sarahelpingdadfightlungcancer you are such a kind sweet person.. i hope tomorrow's appointment goes well. If you are able to, (dont know what the covid protocol are now) perhaps bring another person with you. For emotional support and a second set of ears.
My fiance was too depressed to take in the information, and my anxiety was through the roof so I couldnt absorb much myself. His dad was the calm rational person so he got the information that went over both our heads. Yes i used to think going out with friends was selfish but absolutely not. You need non cancer time, and the support like I said. I was in a therapy group at the time actually. Once a week the group would go on an outing. I would always bail on the group so I could take my fiance to radiation. My group said I badly needed the outing. Long story short, my mom yelled at his family to pitch in because being the sole caregiver with no outside time other than hospital appointments nearly destroyed me. So once his dad and brother pitched in I was able to get out a bit, go to the group outings, and see friends. It made a world of difference to me…. Even if it's for an hour. Besides the fact, my fiance didnt want me around him 24/7. I can be extremely annoying. Just ask anyone on the site who knows me. Lol. All jokes aside, my fiance wasnt the type of guy who liked hovering, so my outings were good for him too. I can totally sympathize with your dad being a changed man. After diagnosis, my fiance went from a vibrant strong full of life guy with a wicked sense of humour, to a shell of his former self. I never got him back and it absolutely broke me. I'm so sorry you have to go through that too with your dad. This part is the worst, the helpless part. Its guttwrenching. 4 years later I can smile at our memories and think of the sarcastic things he used to say and laugh to myself. He was one of a kind, and even if I date again there will never be anyone like him for me again. Anyway I'm kind of rambling now but just know we get it here…and let us know how tomorrows appointment goes. I'll be thinking of you and your dad.
I am so heart broken. I went to dads appointment today and the doctor said that because the cancer is in multiple places in the brain he wouldn't recommend treatment such as chemo. I said to the doctor not even clinical trails or immunotherapy? He said if we give dad more chemo it will make him more tired and won't give him the best quality of life. He said the chemo will give him a risk of intracranial bleed. I asked him for a second opinion, he said he will review dads case at the tumour board on Friday and call us then. Thank you Ach2015, for suggesting this…I can't believe this news.
Also, i got an update on Princess Margaret Hospital and my dads family doctor told us that some of them have accepted the requisition and they're looking into dads case. One of them declined it.
I had a talk with dad on our way home. He has come to terms with this news. He wants me to look for a lawyer to get a will. It's so heart breaking to see dad so broken inside. Brighty, I appreciate your message and checking up on me. I can't imagine how hard it was for you. Having a support is so so important and i'm glad you're doing okay.
Dad said to me that as long as his dizziness is stable he accepts how much time he has left. My tears keep coming and I feel numb. I hate cancer so much. It has destroyed our life.
@sarahelpingdadfightlungcancer my eyes filled with tears as i read your post. I'm so very sorry. Sometimes quality of life has factor into this terrible decision. I know we would do anything to hang on to the ones we love but not at the expense of quality of life. What a dreadful disease this cancer is .. destroying so many lives. Having a will and getting things in order is important….do you know your dad's wishes? Spend time with your dad, make some awsome memories. It's ok to cry…let it all out. Know my arms are wrapped around you in a virtual hug.
Hi @sarahelpingdadfightlungcancer Sara,
I am sorry to hear the news from the oncologist regarding treatments. The good news is that the case is being heard by the tumor board on Friday for that important 2nd opinion. This along with the 2nd opinions anticipated from PMH will provide more information toward treatment options.
Getting our affairs in order is something we all need to look at doing. Well before cancer, my wife and I had our wills written up and our last wishes were made known and written out. This as well as assigning a POA and advising what level of care and intervention we wanted should serious illness occur. These are important things that help give us some control over our situation. I always say hope for the best, but prepare for the worst. Preparation is something we all need to consider in life. I commend your father for deciding to make some tough decisions about his future while keeping the faith toward interventions yet to be explored.
I hope the answers yet to be given will provide you and your father with positive news about treatments and the path forward.
Keep well and keep moving forward.
You are quite likely now (and may have been for a few weeks) in anticipatory grief. It’s hard. The numbness you’re feeling is, I believe, your body trying to protect you from the reality of what’s happening. The feelings are there, and hopefully will surface slowly enough for you to deal with them as they come without overwhelming you.
Please don’t stop writing in with updates. The community is here for you and your dad,
HI, Sara. I promised to get back to you this month. How is your father now? Saw your post to my CT scan news. Brain business is mixed reviews. Radiologist says recent MRI shows return of BC, radiation oncologist says no, more altered brain tissue from last years radiation treatments.Same story, I got last spring. So don't know what or who to believe? Rad guy said he would send image to the brain surgeon to get his thoughts. Over a month now and no comms so for. BEST WISHES TO YOU!:-)
Thats good news. I hope all goes well with you. Dad is good, he is going for his daily walks and being active. His dizziness is much better. He is overall stable and doing good. I am waiting for the oncologist office to call me back to get dad on a chemotherapy drug. (waiting for funding). All the best to you :)