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Whole family struggling
LVL999
6 Posts

My dad has been diagnosed with stage 4 cancer last week and is now waiting for palliative chemo. I actually hate the word palliative, but I'm trying to get used to it because hopefully, this word won't apply to us.
I was the first to hear the diagnosis, as my father can't speak fluent english. It was so heartbreaking to share the news to him and my family.

Since then I haven't been able to breathe properly. Every breath I take I'm conscious of. It just feels like a huge weight is on my chest. I haven't been able to eat well either. I nearly pass out at night due to fatigue but wake up crazy early..

I guess it's just the constant stress that I am the first point of contact for all clinical staff. My parents constantly apologizes for their lack of english and putting me in this position, which I also hate hearing. I'm the younger child, so maybe that's why they are more upset about it. I told them that I'm actually glad that I can at least do this for them.

The thing is, I can't focus on anything else. Last week at my 9-5 job was brutal. I just want to take a break and spend time with family before he starts chemo, but my dad wants me to live normally as before. I haven't told my boss yet about our family situation.. What should I do? I'm lucky in a sense that my mother is retired and can be a full-time caregiver, but I'm also constantly researching.

How did everyone deal with their life? My family was my whole life. Just imagining my life being taken away from me scares me so much.

9 Replies
Brighty
8442 Posts

@LVL999 im so very sorry for you dads diagnosis. After being on the site for 5 years and reading many posts, I can tell you now that stage 4 cancer is not always a death sentence. People are living longer with quality lives . If it's ok to ask what type of cancer does he have? I can also tell you that palliative doesnt mean what I had always though it meant. Palliative is for managing pain and giving the patient quality of life. Cancer certainly affects the whole family. I remember when my fiance was diagnosed with stage 4 cancer. I couldnt focus on work either. I did have to end up telling my boss (principal) what was happening. That way if I bursted into tears or needed a time out, they knew what was happening and gave that to me. They were very supportive. I also found work for me was helpful. It got my mind off the cancer a bit and gave me a sense of normalcy in my life. If you dont take care of yourself, you will be no good to your dad or family anyway. I also found it beneficial to talk to the cancer center social worker who gave me strategies to cope. As well, seek out other friends and family members for support . Think of things your dad and your family need, and don't hesitate to ask. Others will be happy to help, whether its meal prep,grocery drop offs, donr be shy to ask. Your family does not have to feel alone, nor should they. Thanks for reaching out. We are here to help you through.

Cynthia Mac
3876 Posts
LVL999‍ , As Brighty‍ Points out, your breathing and eating are very instrumental parts of your father’s health care, for without them, he will need someone else to interpret for him, so you keep doing both of those, ok?

I know it’s hard. My Dad had lung cancer, and it’s a steep learning curve on top of raging emotions. Totally get it.

Like Brighty, I, too, learned that palliative has a different meaning, and that palliative treatment can go on for a long time. In this case, palliative means that the cancer cannot be cured, but it can be managed - like other chronic diseases such as MS or diabetes.

Like you, my dad appreciated the fact that I was there for him. It strengthened our bond like nothing else, and, while that probably made it harder for me when I did have to let him go, the knowledge that I did everything I could for him gave me a certain amount of inner peace, too. Know that you are doing good work, whether it is translating, or staying with your dad while your mom goes out for groceries.

Try to spend less time researching, and more time just BEing with your Dad. I often say that the one gift cancer gives us is the chance to make loving memories before it’s too late.

And keep breathing, eh.
D1955
120 Posts

@LVL999

My heart goes out to you.

You have already gotten some great advise.

I found a journal a great help especially for tracking appointments, treatment and so on.

If you can do one side in English and the other side of the page in your parents language. They can write in questions that they have.

As for Palliative Care, it's true meaning is comfort care and not necessarily end of life.

I also find the need to so research but I stay with only reputable sites.

Canadian Cancer , Princess Margaret, Jurvenski, Mayo etc.

Your workplace should be understanding of what you are going through. I found work a distraction when my father was going through his cancer journey.

You may want to save any extended leave for a just in case you need it further in his treatments. But you need to do what is best for you.

We are a caring community and are here for you.

D

I am very sorry to hear about your dad’s diagnosis. My dad was diagnosed with Stage Three squamous cell carcinoma last year. I too acted as the primary caregiver/point of contact for my father as he doesn’t speak English very well. And since all of his treatments were during last year's COVID lockdown in Ontario, I wasn’t able to join him at his appointments. I had to wait outside in the parking lot and wait for the phone call to speak to his doctor. I understand the stress and anxiety that comes with waiting for that phone call or hearing your phone ring. My mom too was full-time at home during his treatments. However, as she isn’t a great driver, on top of being the primary point of contact, I had to run all the errands and take him to and from his appointments. I too was working a 9 to 5 - and fortunately, I was working from home. Furthermore, all of a sudden I was also taking care to ensure that all the monthly household bills are paid on time. Pretty much in weeks, my role and responsibilities within my family changed dramatically. During these months, it was very hard but I had to learn how to curve little moments for myself and not feel guilty. Enjoy a little drive, go to a park hang out with friends, etc. I also had to make sure my mom also had a break once in a while from her caregiver role. I did tell my work as soon as I knew the treatment plan about my dad so they understood if I had to take off randomly throughout the week. But don’t get me wrong, during his radiation treatment, I did consider taking a leave of absence for a month so I can take him to his appointments. Luckily for us, we were able to use Wheels of Hope from the Canadian Cancer Society with his transportation for the majority of his treatment, and I kept working. Also, my workplace is very understanding of the family obligation one might have. Even though I was working remotely, I would choose a day every week or so, and work from a location that is not my house. I found that this gives some space to breathe and a little moment of “normalcy”. My recommendation would be to first share what is happening with your work. This will help your work with managing their expectations from you. Second, have little moments for yourself. Do things, even if it's 10 mins just to enjoy a cup of tea by yourself. Check in with your mother to see how she is doing- caregiver fatigue is a real thing. Lastly, this is a great community full of resources and great people. Please do reach out if you just want to talk or vent. Not a lot of people gets who aren’t caring for a person with this horrible illness how tiresome and stressful the role of a caregiver can be.
Cupcakes
158 Posts

Hi @LVL999

I’m really sorry about your dad. My heart goes out to you because I know the whole family goes through it, not just the patient. For me telling my stage 4 diagnosis to my family was much harder than receiving the news. The anguish in their faces I still remember clearly. The good news is that was over 2 years ago and I’m doing better today than I was when I was diagnosed. My health is stable right now and I feel great. Lots of us late stagers still live regular quality lives.

I can imagine you are stressed and conscious of everything it’s what happens when you love someone so much and feel helpless. I found so much comfort in all the support I received. Your dad will too in you. Your love for your family shines through your words. And once you are ready to tell people, like at your work, you may be pleasantly surprised at the care and kindness you receive. Making memories and just having fun is one of the best things you can do. I know for me I didn’t want to live like I was dying. Just wanted to have fun and good times. The truth is nothing is promised for any of us. None of us know how much time we have. Even dying of stage 4 cancer isn’t promised. Anything can happen and there are new breakthroughs in treatment all the time. And most of us can get a lot more time than predicted. Sending you hugs 🤗❤️

Trillium
2008 Posts

@LVL999 - most of us find the newness of a cancer diagnosis the hardest time. It was for me and the weight of it was very hard to carry all day.

In Canada we do have compassionate leave from work for caregiving. This is through the EI program. It is important for your own health to have other family members help you. Maybe you can contact a service that does interpreting for health related conditions and they may have ideas to help your family to ease some if the stress? The CCS (Cancer Society) have information specialists who could look for this or other helpful services for you and your family. Contact them here:

https://cancer.ca/en/living-with-cancer/how-we-can-help/talk-to-an-information-specialist

The links below will also be helpful.

Questions to ask when you have cancer that you can print out and keep track of needed information

https://cancer.ca/en/cancer-information/resources/publications/questions-to-ask

What your father and family are going through with being newly diagnosed.

https://cancer.ca/en/living-with-cancer/coping-with-changes/newly-diagnosed

So sorry your family has to endure this pain. Please keep talking to us and updating how you are doing.

Warm hugs❤️‍🩹

LVL999
6 Posts

@Brighty @Cynthia Mac @D1955

Thank you for your supportive words. My dad has gastric cancer with metastasis to the liver and lymph nodes. So far we have changed our diet, we've been going out more on long walks, and I've been trying to focus more on work. My office is still working remotely so I'm glad I spend time at home. I guess it's harder for me to tell my boss since we've been working online mostly through emails.

But with regular meal times, healthy food options, and exercise, we've been joking that we are getting healthier with our dad as well.

We now realize that it's going to be a long journey. and like @Cynthia Mac said, we're really trying to treat it as a chronic disease that will be with us the whole lifetime.

Thank you everyone, I'll be visiting again soon.

LVL999
6 Posts

@tania.rashid

Thank you for all the advice. I am also working from home which is very fortunate. But other than our dad, no one is the family can drive very well, especially in the downtown area where we are located. Thanks for the information, I'll be looking into those transportation methods as well.

Your comment gave me a bit of courage to break the news to my boss.. I'll most likely tell them this week.

JenG
110 Posts

@LVL999 You've gotten great advice already. And you have so much support here, please feel free to rant, ask questions, or just keep us updated if you like. In regards to your boss and work, we never know how people will respond until we give them the chance. It's scary to be vulnerable and ask for help. I understand that for sure. Give it a go and start the conversation. You might not need time off now but you will eventually. Take a deep breath as often as you need to. And let us know how it goes.

Take care of yourself,

Jen

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