Posted by Carefreewritingsonthewall on Jan 8, 2019 2:44 pm
At first, I felt so grateful. Her pain was over and this fight was over. Seeing her struggle to breathe, walk, eat, or sleep was over. I managed to write and say the eulogy at her funeral. We managed to celebrate Christmas with relatively few tears. We’ve had a counsellor come to the house to speak with us a few times. It’s helped, but I’ve found talking about it hurts too much.
Somehow I didn’t realize it had been one month. My Dad asked me if we could say a prayer. My Mom was cremated and she asked not be buried or kept anywhere until my parents could be buried together. We have created a space for her in tribute in the house. Having her close has helped, but that day, I struggled to realize it had already been 30 days. Since then, I’ve found it really hard. As I start planning to go back to work, I’ve found it really hard to prioritize what I want and need.
Today I’m really struggling. I have a trio of papers due on January 15th, two short ones and one research paper. For the last three days I’ve sat down at my computer every day and I haven’t been able to focus. One of the papers is on an article I started reading and annotating at one of my Mom’s appointments. It’s been hard to revisit it because it brings me back to that day.
I also have a conference in Europe in early February that I’ll be attending. When I mentioned that I hoped to travel a bit, my Dad asked if we could travel together. It turned into a huge debacle though. Neither of us could decide on where we wanted to go. Gradually the trip became something else entirely. He pushed back on the timing, saying it was too late into February to go. So then we would leave the last week of January. Then it was the middle of January. Then it wasn’t a trip to Europe anymore because, according to him, it’s not worth it to go when it’s cold.
I was having a really hard time with it. My mom’s sister helped me focus and tell him that I couldn’t do it. But I got sucked in to the idea of a trip to an all inclusive. So now we’re going to the Dominican for a week on the 16th – the day after these papers are due.
I was originally going to go back to my apartment and school to finish these assignments, but my Dad convinced me not to – that the expense of going back and forth was silly. So here I am trying to finish these papers in my childhood bedroom. I have a wonderful set up, but I just can’t. I find myself obsessing about stupid things, like the fact that I have no bathing suits or spring clothes at my parents’ house. My Dad offered me my Mom’s wardrobe, but I can’t do it. So I spent two afternoons looking online for clearance items. I’ve had a hard time letting go little things – like misplacing a receipt or a bill. I know this is just my anxiety working through my grief. I recognize the signs. But I just can’t get ahead of it lately.
So here I am today, having a tough day. But I’m working through it, slowly but surely. I know it will be important to assert myself and find my own routine again.
I wanted to thank everyone for reading my novel length posts for the last year, and for being so thoughtful. It has been hard to look back on what I wrote, and to revisit what I was feeling. Thank you from the bottom of my heart for being so patient, and for your amazing replies. They’ve helped so much.
Posted by Brighty on Jan 8, 2019 4:04 pm
Posted by Lianne_adminCCS on Jan 8, 2019 7:16 pm
Thank you so much for trusting us with your mom's diagnosis and passing. I am so very sorry for your loss. While you have no doubt helped others through your posts, I wanted to direct you to a discussion that you may find helpful yourself
We have a group called Coping with Grief where you will find others that have experienced the death of a loved one. Some of what you have written resonated with me when I lost my dad to cancer many years ago. And for me, I wanted to avoid the process of grief and just get to the part where I had good memories. But the truth is you have to go through it and now even this many years later I still find myself in tears on occasion.
I hope you are able to get through all your papers in due time and are able to enjoy your time away with your dad.
Keeping you in my thoughts
Posted by Cynthia Mac on Jan 9, 2019 8:01 am
It’s not surprising that you had to be reminded about the time that has passed. A lot happens in those 30 days,a lot happened in the 30 days before that, and you have a lot going on. I encourage you to be kind to yourself through the grieving process. If you’re having a bad day, acknowledge that, and allow yourself some time to reflect and honour her memory. Chances are, the next day will be at least a little better.
When you look at that paper that takes you back to the day of her appointment, acknowledge that, as well as how much has happened since then, and remember how proud your Mom would be to know that you finished that paper.
Posted by Munkins on Jan 24, 2019 2:39 pm
I am having a hard time dealing with the fact that both on my parents have lung cancer. Mom told us in November about her's & Dad told us on Jan. 10th. I have been trying to find any group or support that fits my situation and it is really hard as both me & my sister are trying to deal with this. Like, how is their treatment going to effect them, are they going to get to a point where we need to step in to help & how or what does that look like. We re both worried in the back of our minds that they are going to die from this. I have depression and anxiety disorder and trying my hardest to handle this, so far it's winning. So that's my life in a nut shell.
Posted by Aly on Jan 24, 2019 3:04 pm
Welcome to Cancer Connection! I wish we were meeting under better circumstances; however I am glad you found the website.
My name is Aly, I am a mentor here on the website. About a year and a half ago, I was in a similar position as yourself and I can understand how difficult it is to see someone so dear to you go through cancer.
The questions you have written out are normal worries for this type of situation. Unfortunately, as I am not a doctor I am unable to tell you exactly how your parents treatment will affect them. Every person responds differently to treatment, however; I recommend directing this sort of question to your parents’ oncologist(s).
At this point there is no telling if you or your sister will need to step in to help, there may be a time down the road where you may need or want to. Since the diagnoses happened so recently I would definitely speak with their oncologist to get a better idea. Are you aware of what stage and/or treatment plan has been given to your parents?
Concerning your anxiety and depression, are you currently seeing a doctor, counsellor, or taking medication? Make sure to take care of your health as well during this time!
Do you mind if I ask where you are located or which major city you are closest to? I may be able to recommend some services for you in your area. If you are uncomfortable with that, I recommend calling the Cancer Information Service line at 1(888)939-3333
If you ever need to vent to someone, I am here don’t hesitate to message me.
Posted by Cynthia Mac on Jan 25, 2019 6:37 am
Being a caregiver requires a bit of “knowing when.” It’s a balancing act, at times. I am my Dad’s caregiver. We lost my Mom just two months before he was diagnosed with lung cancer in late 2017. When Mom passed, I knew instantly that Dad was going to rely on me for certain things - organizing household services, balancing chequebooks, etc. - but I wasn’t expecting that healthcare needs would happen as soon as they did. The “new reality” really threw me for a loop, as it has done to you.
My best advice is to stay in touch with your parents, and have deep, meaningful conversations with them, if that is at all possible. Parents have a way of keeping things from their kids so as not to worry them, and I expect they’re particularly like this with you. But, knowledge is power, as they say, and meaningful conversations with your parents now can be of benefit to all of you. If you can stay in touch with their oncology teams, that’s good, too, because they’ll have a slightly different perspective than your Mom or Dad will.
These conversations will help you and your sister to know when your parents might need you - For example, I made sure I stayed with Dad for a couple days after his surgery, and I usually stayed overnight when he had his chemo treatments. But, he was living alone, and is nearly 80. By the end of his chemo, I was taking him home and staying an hour or so, and if he was alright, I headed home, secure in the knowledge that he’d be ok and that the homecare nurse would be along the next day.
How close are you to your parents? (Geographically and emotionally.)
We can try and reassure you, but we don’t know enough about your parents’ individual circumstances to know what to say. As Aly says, we’re just a message away, though, and we’ll do our best.
Posted by ashcon on Jan 25, 2019 8:59 am
Allow me to add to the good advice from Aly and Cynthia MacMac.
If there is a Gildas Club (or something similar) close to you, I highly recommend you tap into that resource.
My sister took advantage of the support she received there after our mother's diagnosis of Stage IV esophageal cancer, followed by my diagnosis of Stage III breast cancer 7 months later. She told me that she found tremendous value in the shared stories of fear and hope, helplessness and determination.
The most valuable thing was realizing that she was not alone in this
(Something you will also discover on this site.)
Secondly: CynthiaMac is right on by saying parents tend to keep things from their kids for fear of not wanting to frighten them.
I was guilty of that 100% and my daughters are grown adults at 23 and 26
Thankfully they were caring enough to sit me down and tell me that they did not want me to hide or sugarcoat anything.
That even if things took a turn for the worse we would deal with it. Together.
(I am 'clear' of cancer at this time.)
I cried alot when they said these things and am so very grateful for their courage and honesty.
Don't underestimate how much your parents would appreciate you becoming engaged and involved in their care right now.
Start by talking to their doctors and doing some research on their type of cancer - reputable sites only!
It's all about moving forward with what needs to be done for them and for you and your sister.
Good luck and keep us posted on what you find to be helpful. Others may benefit from what you can share.
Posted by Munkins on Jan 28, 2019 10:02 pm
Posted by Cynthia Mac on Jan 29, 2019 9:15 am
To a point, your Mom is right - there’s not a lot to do at her chemo treatment, and the staff is very busy. But, they are used to chatting to patients and visitors while they work, and it might give you a bit of peace of mind to see people who deal with this every day, and to see how they interact with their patients. I actually didn’t want to go with my Dad to his treatments - I can’t even watch someone getting a flu shot on TV (I hate that time of year), so for me to walk through a wing where people had ports and needles and tubes took more strength than I figured I had in me. But I digress.
The staff aren’t all simper-y, going “Would you like a blanket?” With the word “dear” implied at the end — it’s far more of a cheery, matter-of-fact tone of voice, like, “Are feeling cold? Can I get you a blanket?” It is truly amazing to watch these people at work. I have SO much respect for them.
Since you are close to your parents, you’ve probably got a good line of communication going, so don’t be afraid to open up to them. Let them know your fears. Tell your Mom, “I’m concerned, and I think that if I knew a little more, it might give me some peace of mind,” if that’s how you feel.
You don’t have to stay the whole time, either — you can pop in to the treatment centre on a lunch hour. The lady at the desk can tell you which “pod” she is in (if it’s set up the same way as our centre here).
Your peer-to-peer volunteers are doing the best they can, I’m sure, and if they ever can’t make the call, you can come here - we’re kind of the same thing, only on-line. I usually come on in the mornings, and sometimes check in later in the day, but if you really need help, you can friend me and send an e-mail — I think I get a separate e-mail that way, and I’m apt to catch it a little sooner.
As well, as a family member, you can go to your local cancer centre, explain your situation and ask for help. Failing all of that, I encourage you to talk to your own doctor - I’m not used to going to my GP for things like that, but I had lost my mom in August (sudden heart failure), and then, when Dad was diagnosed a few months later, I figured it was a good idea to give my doctor a heads’ up, in case I ran into trouble. Funny thing is, I don’t even remember that appointment, so maybe I was a little more rattled than I thought.
I would suggest that you try to reach the Dickson Centre again, and if you need more help, you’re always welcome here.
Posted by GabbyH28 on Mar 30, 2019 7:17 pm
My mom was first diagnosed with breast cancer about 7 years ago. At the time, she was diagnosed as stage 3 with a lump in her left breast and some spread into her lymph nodes. She underwent a mastectomy as well as surgery to remove cancer cells in her lymph nodes followed by chemotherapy and radiation treatments. Her battle continued as she found out through genetic testing that she carried the BRCA1 genetic mutation (her mother ultimately died of breast and uterine cancer in her early adulthood) so my mother underwent another mastectomy as well as reconstructive surgery, and later a hysterectomy as preventative surgeries. Treatments were successful and she won her first battle with cancer.
It has been 5 years since she was diagnosed as cancer free.
Recently though, her life as well mine and all her loved ones have been changed by cancer once again. Her cancer has now metastasized and a tumour has been found in both her liver and her lung (stage 4). Doctors are optimistic that a series of three different treatments (mini chemo pills and injections) will continue to prolong her life for at least another 7 years. Although this is more positive news than what I was expecting, I find myself questioning why this had to happen again and I am struggling with the idea that her time may come to an end (as most of you probably wondering the same about your loved ones too). She has already gone through so much. I am constantly feeling anxious about the future and do not know what to expect if and when there starts to be a decline in her health.
To add to this, I have a bit of a unique situation in that I have a twin sister with Down Syndrome who is currently in the primary care of my mother. I know that caring for my sister isn’t something my mom can maintain during her treatments and while she needs to focus on herself and her health. One of my biggest worries right now is making sure that my sister is also cared for and also who will care for my sister when my mother passes. My sister is not independent enough to be living on her own. Funding and programs for her care are limited to the town where she is living while my career forces me to live in the city. I have been feeling guilt over this and anxiety since there is so much unknown.
Any guidance or support in this is much appreciated.
Posted by ACH2015 on Mar 30, 2019 7:59 pm
Its tough going through cancer once, and a second round is never welcome, expected or easier to deal with. This includes the whole family as well as the patient.
The good news is that your mom's specialists have determined there is a series of treatments available to deal with this metastasis, and prolong her life.
Like your mom and many here, I too have stage 4 cancer. Over the last (almost) three years, I have had many surgeries, chemo, radiation, and immunotherapy as treatments. I just recently resumed my 5 year surveillance after suffering a recurrence. Like your mom, the good news is that my team found additional treatments to deal with my cancer Round II.
There can be questions with no answers, and I'm afraid the "why did this happen - a second time" may be one of those Gabby. The fears, anxiety, anger and all the other emotions resurface and certainly aren't easier to deal with. When I felt very unsure of the future, it was suggested to me to try to "deal with the now" and focus on what is going on today. It's easy to say, and takes practice to refocus.Counseling for your mom, yourself and any other family members is usually available at the hospital our mom is being treated at through the social workers. Have you or your mom spoken with any social workers or mental health professionals about the recurrence?
I am also going to suggest the social worker at the hospital as a resource for you to assist both your mom and sister in dealing with both care needs. Other social service resources may be available to assist with care during upcoming cancer treatments. Community services may be able to assist with some household duties and personal care needs for both your mom and sister.
You don't mention where you are located, and I would also suggest you look up community social services in your town, city, province. Understand what the needs are of your sister so that you can advise the social services departments for the assistance needed. I know you said funding and services are limited to the town where your sister lives, and hopefully given the circumstances the needs will be addressed.
One step at a time, and with some social assistance I hope you get answers you, your mom and sister need to move forward here.
Remember to look after yourself Gabby. Your stress and concerns are of equal importance to address. You are doing the best you can, and reaching out here shows that.
Keep well and keep in touch.
Posted by Cynthia Mac on Mar 31, 2019 8:00 am
Guilt and anxiety are very natural emotions for you to have at a time like this, and it’s important for you to acknowledge them. The problem with them is that they don’t serve any productive purpose: all they do is take you away from time that you could spend being proactive about your mom’s and your sister’s care.
You mention that you work “in the city.” If you’re unable to obtain counselling through your mom’s cancer centre (which sounds to be somewhat of a drive away), do you have benefits through your work that can provide you with some counselling to help you?
You might also try contacting the social services in your city to meet with someone about needs/ assistance that might be available for your sister. (Andy touched on this point earlier...) Many, many years ago, I worked in a facility that employed people with Down Syndrome. At that time, thei employment funding was local, but their living allowances/ pensions were issued at the Federal level, which I don’t think would have affected them if their family needed to move. It’s been a long time, but you can check with your federal reps. In Ontario, there is also a disability support program, and I know that people on that program aren’t limited to living in one town. Your local or your sister’s local Social Services department can provide more information about that.
You obviously want to help in this situation, and, once you’ve had a chance to process this part of the news and set some systems going, I think you’ll manage well. Please check in and let us know how you’re doing.
Posted by Elizabeth06 on Mar 31, 2019 9:48 am
im glad you are reaching out. You will find much support here on the Cancerconnections site.
i have metastatic breast cancer. I was diagnosed in 2013. I have been on several different types of treatment, so, know that your moms treatment options are not limited to this one.
how old is your mom?
with her history of breast cancer in the past, perhaps she has already thought about how your sister will be cared for when she is unable to do so. It might be one of those topics that people keep under wraps because they fear upsetting other family members. And nothing may need to change immediately, but looking openly at options, with your mom, will provide you both with peace of mind.
you have received good advice about self care from ACH2015 and Cynthia Mac .
Keep reaching out.
Posted by cupcakeangel1234 on Aug 11, 2019 2:46 pm
Posted by Brighty on Aug 11, 2019 3:57 pm
Posted by Brighty on Aug 11, 2019 4:42 pm
Cynthia Mac is looking after her dad who has lung cancer so she can give you the perspective of caring for a parent with lung cancer. They will be in touch and give you good advice, support and hope.
Posted by Dave73 on Aug 11, 2019 6:10 pm
Im so sorry to hear about your fathers lung cancer diagnosis. I as well am dealing with Lung Cancer, and a have another small tumor, on my femur bone. My sickness is not reversible or curable, can only be prolonged, I am stage 4, and the Dr.s still seem optimistic, I have young children, and that's the hardest part for me. but I use them as motivation, but when I think about them I always cry. I was diagnosed in March, battled through a surgery, completed radiation, completed 4 infusions of my immunotherapy (keytruda). I received my first ct scan Friday and it was positive the primary mass has shrunk. So im here to say, what they can do with medicine these days, and the Dr.s are so knowledgeable, there is hope these days. I received a prognosis of 18 months to live last week, but I refuse to believe it, and im not laying down. Already the tumor has shrunk. I am a true believer, that you have to take care of your body, during and after treatments. Physical activity is a must. Doesn't mean run a marathon, or swim across Lake Ontario, lol. Walking, biking, anything to feed the muscles some oxygen and get the ol blood flowing faster than normal. Also I try to eat healthy, as I can you have to cheat once and a while. Myself I like lots of proteins and lots of greens, I don't drink, and try not to put anything toxic in my body anymore. But a lot of this all depends on treatments, meds ect. I hope I was of help, any question just ask
Posted by cupcakeangel1234 on Aug 12, 2019 12:00 am
Posted by Brighty on Aug 12, 2019 12:36 am
Posted by Cynthia Mac on Aug 12, 2019 6:42 am
It is unfortunate that your “extended family” chose not to share your Dad’s condition with you, and my recommendation would be to put that hurt onto a shelf to deal with another time, if you can. Resentment and hurt are only going to steal time away from you that can be used to spend with your Dad right now.
Brighty ‘S suggestion about using Skype or FaceTime is a good one, and Dave73 ‘S observation about the need to “burn off” your frustrations through exercise is good, too. I find that when I have pent-up anger, hurt, frustration, or anxiety, the exercise can get that out of my system in a way that needlework can’t!
If I’m reading your post right, you are your Dad’s only natural-born child, and that he was always expected to include you with his step-children in activities. Have I got that right?
You’re right: a cancer diagnosis changes the mindset of not just the patient, but also of their loved ones. When we’ve never lost someone close to us, that information very much magnifies our fears. I can tell you that it doesn’t matter if you’re 25 or 60, a daughter still doesn’t want to lose her dad, and when that becomes imminent, it hurts. A lot.
It’s OK to have a cry after you talk or visit with your Dad. Like exercise, it’s another form of emotional release. It’s also great that you are able to be strong while you’re talking to him. Your Dad needs a “bright light” in his days right now, and who better to provide that than you.
I encourage you to think about some creative options for visiting your Dad. For example,
- you could take UP to Pearson Airport, and then get Simcoe County Airport Service to take you right to his door.
- If you drive, you could rent a car for a weekend, and, if city traffic isn’t your thing, again, you could take the subway up to Vaughan Centre Station, and take transit to a car rental company.
- You could take the GO train or bus to Barrie, and then, perhaps, find an Ontario Northland bus or an Uber that might take you out to Collingwood.
- You could call the Collingwood Town office to see if they have a bus that goes to Barrie. I know that there are currently busses that go between Barrie and Midland, and Barrie and Orillia, but I don’t think there’s one that goes to Collingwood yet.
The airport service will likely be expensive - car rental likely will cost a bit, too - but can you imagine how happy it would make him, not to mention yourself?
Meanwhile, looking up train and bus schedules is something productive that you can do with your “worrying time.”
Posted by WestCoastSailor on Aug 13, 2019 12:14 am
Not often I lose a post but it happened this morning with my first response. So I'm doing it again.
I'm on the Dad end of the story with Stage 4 NSCLC (non small cell lung cancer) When I told my oldest boy the news he was working in Holland and we were connected with a crappy WhatsApp connection. He wanted to drop everything and fly straight home. $7000 to change his ticket slowed him down. And as I said "I'm not dying." So he finished out the last ten days of his contract and came back to Edmonton. A day to straighten out his affairs and then he drove down to Surrey BC. Together with my youngest son we spent a magnificent weekend camping before i started chemo/radiation.
Having the hard conversations is important. Have you talked about hospice and his treatment wishes? Have you talked about palliative care? Is MAID (Medical Assistance in Death) on his mind? What about funeral/celebration of life arrangements? My wife died in November and I'm glad we had the conversations. It made the decisions that I was asked to make a lot easier knowing what she wanted. My kids have asked me to write my own eulogy... Not sure who will read though.
Blended families can be challenging. I'm fortunate. MY stepmother is actually my primary caregiver (though she has to drive 4 hours to attend my appointments.) When I had my mastectomies she stayed with me for the first seven days. It took till day 3 until she asked permission to clean my apartment.
Lung cancer is a tough disease. There is a lot of stigma attached to it. First question I get asked is "Are you a smoker?" like maybe my bad choices had something to do with it. Not the issue. I'm not so it probably irks me even more.
For me the conversations with my kids are part of the legacy that I want to leave. We talk about the things that they are doing, the challenges they are facing, and just listen to them.
Thanks for sharing your struggles and insecurities with us.
Stay in touch.
Posted by cupcakeangel1234 on Aug 13, 2019 1:06 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.