Posted by stew on Aug 29, 2019 9:07 am
I thought he’d surprise them. I continued to try to find a pain solution for him. It was the biggest complaint he had. I just wanted to get him into a place where his pain was better under control so I could take him to some places on his bucket list. So I could enjoy some time with him. His next scan, one month ago, was even worse. The doctor thought we should stop dialysis and let him go. Before we could make that awful decision, he died- one week later. Now I regret that I didn’t treat every day in the last four months as though it was his last. I focused on the medical miracle I was convinced would come but I should have just stayed by his side and spent that time with him as it was. So that is my advice to you cupcakeangel1234 : don’t spend another minute fretting about why you weren’t told. He’s still here. Just be with him. You can take compassionate care leave if you want. I wish I had. Make the most of every day.
Posted by Cynthia Mac on Aug 29, 2019 9:40 am
stew , your advice is amazing, too. My Dad’s onco said that if he didn’t have treatments (which he is), he would only have months left, so I am trying to live your advice. Dad’s coming in this afternoon with a friend to help with some bits around the yard, and we went for a tour around Canadian Tire the other day and got some giggles.
cupcakeangel1234 - have you been able to get to see your dad again?
Posted by Lianne_adminCCS on Aug 29, 2019 6:00 pm
Reading your profile and this post shows me you have had a lot of cancer in your life and family. I am glad you have reached out here and I hope by reading and responding to the threads here you will get the information and support you may need.
I can relate a little bit as I lost my dad to cancer, I was diagnosed with breast cancer, then my mom was and then my sister with a different cancer.. As tough as it is to go through cancer, sometimes seeing our loved ones go through and have struggles can be a different kind of challenge.
Let us know how we can help support you to support your mom ( and dad )
Posted by Kay79 on Aug 29, 2019 8:08 pm
Posted by Cynthia Mac on Aug 30, 2019 4:14 pm
Have you posed your question about getting your own procedure now or later to your doctor? Knowing that early detection is part of the key to survival, I think personally, I’d want to do it sooner, but, if your doctor can give you information about your particular case, that might help you make an informed decision.
Posted by Carefreewritingsonthewall on Sep 7, 2019 7:15 pm
I just wanted to say thank you for all of your kind thoughtful messages and I think my extended family didn't want to tell me how sick my dad was maybe to protect me but I feel as his biological daughter that I could have every right to know about my dad's illness and it just hurts me as it was a double blow as first I had to find out myself that he's very sick and second of all is the fact that nobody wanted to tell me and I'm devastated. I will take Cynthia advice along with the others who made suggestions.
First off, I am so sorry to hear that your family did not share the diagnosis with you. I was in a similar position. My Mom had been tired and dealing with issues that she quickly found out were not menopause related. She pursued her family doctor relentlessly, but they continued to tell her everything was normal when she felt very unwell. Long story short, she held this from me for months as I was struggling in my first year of grad school. My brother and I were only told after my Mom landed in the ER with severe bleeding (her tumour had ruptured). I was upset that she hid it from me for months, but it was easy for her to do given I lived ~750km away. I had the best information when I was home, but inevitably I had to go back to school/work. Her first round of treatment that summer went very well so I felt okay to leave.
But by Christmas she told me she knew it wasn't gone. By early Spring she was developing symptoms. All throughout, she downplayed how bad it was. She and my father hid that she had developed severe swelling from blood clots in her leg. In April she called me from the ER as she was heading into emergency surgery - to literally save her leg and life. I stayed home again that summer (which was last May-August 2018) to help her. I left in August because again I was optimistic. In late September my parents called me to tell me they had found out the chemo wasn't working. My Dad assured me they had options. I learned later the oncologist and cancer clinic had stressed that they didn't advise further chemo/radiation as it had drastically impacted her quality of life for no benefit. My Dad started looking into crazy alternative medicine options. I bought into it at first until my sister in law told me I needed to come home for Thanksgiving. I arrived and my Mom was barely lucid, due to high levels of calcium in her blood. I went back to work and made the decision to take proper leave from my PhD to be home with her in November. She passed away in December.
I expressly told my parents, especially my Dad, that he wasn't protecting me by obscuring the reality of the situation. He was making it worse. My Dad and I don't have the best relationship, so I found that I had to keep telling him this. He never listened. I was blindsided repeatedly, and lost out on valuable time with my Mom in August and September because I thought things were okay, and I was extremely burnt out from being a caregiver. I declined the opportunity to talk to her on the phone. I hate talking into terms of regrets, but I do regret it. I think I would have taken leave earlier had I had the facts I needed in hand in August. But I know I was also in survival mode, so I was desperate to be optimistic. '
As hard as it is, you do know the situation now. And I would try to ensure you maintain contact and prioritize time with you Dad despite the distance, at least to ensure you have the updates you need in order to make the decisions you want about being there for him.
There is an indy movie playing in many theatres right now called The Farewell, which details a family's efforts to obscure a terminal diagnosis from their grandmother who cannot speak English, and thus discuss the prognosis with her doctor. Many people think hiding the reality of a painful situation from family or children helps them, or saves them from pain. But, I came to analogize it to being stuck in the middle of a highway. There is a difference between seeing a truck coming for you, knowing you can't move, and stepping off the curb to being hit without seeing it coming. Both are painful, but in many ways, you begin to grieve even before the truck hits you if you see it coming.
Your hurt is valid.
Posted by Beatcancer27 on Nov 7, 2019 12:33 pm
I'm also worried that I get depressed and overwhelmed at times and that will negatively affect my baby. I was almost 20 weeks pregnant when mom was diagnosed. Since my mom seemed healthy few weeks before her diagnosis, I also worry what if other family members or I have some type of cancer too. What are some healthy ways of dealing with these feelings? My mom was the person I would talk to about everything and since her diagnosis, I feel like I don't have anyone to talk to and understand me as my mom does.
Posted by Brighty on Nov 7, 2019 2:54 pm
tear up. It reminded me of what I went through as a caregiver. I cried non stop. Even at work. Crying is a good way to get your feelings out. But I also had to seek the help of a therapist who gave me coping strategies. This included distraction techniques, keeping routines , maintaining friendships and getting help and support. I also gave my workplace a heads up about what was happening in case I burst into tears. People were remarkably understanding and supportive. I would advice popping into your local cancer centre and seeking out a social worker to talk to who is trained to come up with ideas on how to cope on a daily basis . My heart goes out to you.
Posted by Elizabeth06 on Nov 7, 2019 2:59 pm
welcome to Cancerconnections. I am so sorry to hear about your mom’s diagnosis.
first, I think you have been handed a pretty significant piece of bad news, and reacting to that, crying, being sad, is a pretty human reaction. But, don’t wallow in that sad place.
there are social workers available thru the cancer centres and programs for caregivers at different venues. Reaching out here is a great first step, following up and getting in person help to process the news would be a good second step.
i am a mother to three adult children and I have stage four breast cancer. My biggest concern after learning my diagnosis was how to minimize the impact on my children. But, being open and talking about what was going on, was how we moved forward. I keep them informed about my health and they ask about how I am doing.
I am still their mother. I still want to hear about what is going on in their lives, offer advice when I can and hear about how they will approach things. Cancer does not replace existing relationships. It just adds a different conversation.
i can tell you that the day my son told me he and his spouse were expecting a baby, was one of the best days of my life. That pregnancy gave me so much hope, they really allowed us to be part of it. We were with them when my granddaughter was born and now she is almost 2 1/2.
So, my advice...talk to your mom the way you always have, ask what she thinks. Just be you and allow her to be herself and not just a “cancer patient”. And at the end of a conversation, just ask how she is doing with everything.
congrats on your pregnancy! One more reason to take care of yourself.
and keep reaching out here, it is a safe place to vent and gain insight from the experience of others.
Posted by Cynthia Mac on Nov 7, 2019 6:54 pm
I had a terrible time with tears this past summer after my Dad was diagnosed with a recurrence and Stage 4, so I know a bit about what you’re going through, although, I’ve never BEEN 20 weeks pregnant, so I can’t speak to how that might be impacting you!
Your mom is still here for you to talk to — ok, not about some of “this” stuff (waving my hand at my computer screen), but I’m sure she’ll be happy to hear about your advancing condition and even some of your day-to-day events like what happened at work or what plans you have for the weekend.
We have some cancer survivors on this site who refuse to let their disease define them. To me, they are the trail blazers who deserve to be followed by both patients and their caregivers.
Feel free to pop in whenever you need to talk about how you’re coping with your Mom’s situation. There are a few people here who can listen to the things you don’t feel right sharing with her just now.
Posted by Beatcancer27 on Nov 14, 2019 11:22 am
I really appreciate your sharing your perspective as a mother. I realize it's important to continue "normal aspects" of mother-daughter relationship instead of letting cancer dominate/define our lives. I try to bring up the subjects that we like to discuss. It's hard to see my mom so weak though. Sometimes, she can't even hold the phone. It is a side effect of chemotherapy so I'm hoping she'll get better as treatment progresses.
Elizabeth06, I'm inspired by how strong you are. I'm thinking of you and I wish you will make full recovery.
I will look into speaking to social workers or therapists. I also learned that there is a caregiver education session in the local library so I plan to attend it.
Posted by Cynthia Mac on Nov 15, 2019 7:35 am
It is hard to see our parents getting weak. My (80yo) dad fell on Tuesday, the day before his chemo treatment. He’s been in awful pain and there’s nothing I can do for it except hand him the Tylenol bottle, and adjust his pillow. Somehow doesn’t seem like enough.
Dad’s treatments haven’t left him as weak as your Mom (but they have made him less vertical - he’s had 3 falls).
With all the technology out there, I’m sure you can find something that can help your Mom stay in communication and not drain her energy. It could be as high-tech as one of the “pods” - Google Echo, or FB Portal - or as simple as a pair of $20 ear buds that plug into a cordless home phone or cell phone. I use ear buds all the time when I’m on the phone so I can keep knitting.
I hope you find the solution and that your mom responds well to her treatment.