I just found this forum and look forward to reading through a lot of the topics. Sorry for the massive text wall, I just feel I need to get it out, even if there is no response :)
Just a brief backstory for me: My mom, who I am very close too, was just diagnosed with stage 1 breast cancer, and the original plan was surgery + radiation. The pathology report came back from the lumpectomy and she had her first appointment with the oncologist last Thursday. The lump was HER2+, a more aggressive form of cancer, so the plan is now chemo and antibody treatment then radiation, then hormone therapy… threw us for a loop, that's for sure.
In the few days since we found out, I have done a lot of research for what to have ready for her first chemo/antibody appt (Dec 8th & 9th!), what meals to cook for her (she will be alternating living with me and my fiance and my brother/his fiance for at least the first 2 cycles), what I need to make her comfortable, etc. I feel as ready as I can for this part of the journey, though I'm sure I'm not.
But, back to my question, how do you plan for the future? This might sound very selfish, but I am an extreme overthinker, so I can't help to dwell on things that I can't just research and make a spreadsheet for.
I've been engaged since 2019 (refused to get married during covid because I don't need that stress in my life). I have always wanted a destination wedding, and we have pretty much settled on a microwedding in Vegas, likely in 2024. My brother got engaged last year and they had already planned their wedding in Punta Cana…. in April 2023. My mom's last chemo will be a week and a day before we are booked to leave, and her antibody treatments will continue so her next one after that will be the week after we get back. At this point we don't even know if she will be able to go… most likely, she won't.
And that's devastating to me, for so many reasons. For her. For my brother. For my dad, who will probably have to make the decision to either leave her at home with no one to take care of her, or to miss his son's wedding.
For me, I need my mom to be at my wedding 100%. Even before cancer reared it's head this was a fact. I would elope if it wasn't for her. She knows how much I wanted a destination wedding, so she would be pissed off if I decided to have it at home. But, going away doesn't seem like an option right now. Of course we could wait until 2024, when she should be done treatments, but the what ifs linger. It just makes me feel sick. And of course my fiance is being supportive, and doesn't mind waiting (we've waited this long! lol), but I do just want to be married (specifically to him.)
Anyways, if you made it this far, thanks for reading. If you have a similar experience let me know! Misery loves company as they say.
@ham I get it! I was a caregiver for my late mom for about three years. She was 94 when she died, so had a great life for sure, but I still miss her every day.
When she was first diagnosed with stage 4 lung cancer, I went on a whirlwind of planning and reading! I jumped right ahead to death and dying!! She was pretty frail when she was first diagnosed and we all (docs included) thought she was going to die pretty quickly. She didn't! She lived for another 4 years and there were a lot of good times in those 4 years, including a wedding.
There's a podcast that another forum member/mentor recommended and I keep spreading the word. It's called the Waiting Room Revolution. Season one is a great resource for your part of the journey - the beginning - and being a caregiver.
So first of all, take a deep breath. You're just starting out with this experience and who knows where it will take you or your mom. And be ready to get help before you think you need it - neighbours, friends, etc - to do things like driving your mom to appointments or making meals or doing a bit of grocery shopping. It might be way early for that but don't let it slip by. I did too much before accepting help and I was really burned out after she died. I'm only now (almost a year later) feeling more like myself.
And ask questions here for sure! Rant away or commiserate or whatever. We are here for you and there are lots of great people here who will share their stories with you so you don't feel alone and hopefully you can get something out of it to help your mom.
You're a kind and loving child to want to look after her.
PS to tag someone, either reply to their message (you'll see their screen name in blue) or try selecting the @ and then start typing their name right after it (no spaces). You have to enter at least three characters. There are some tagging issues so may not work??
@ham Hi…..you bet I read every word of your first post!. I am sorry, to hear of your moms' diagnosis…..but I know, you, your brother, your dad, and loved ones….will rally around her, and support her 10-fold.
Do plan for the future (Wedding(s)….destination and more)….it gives you all, a goal to attain! No need to plan things to a “T”….just make plans….be ready for bumps along the way….
Example…..there MAY be a Lovely Celebration/Dinner/Party in your home town, AND a destination wedding……prep for “2”…..get all options covered….this was just an idea….
On my journey (Colon cancer)…..I had to learn to PIVOT!! Just change as things did change fast…..SO: stay on your toes….give all the support you can…..and all will work out….with readiness for curves!
We are all here, to support you, and your family.
@ham Welcome to cancer connections. To say cancer is inconvenient would be an understatement but the truth is, it IS! Despite that, planning and thinking about your future and how your mum fits into it is so important. It gives you both something to focus on, something to look forward to and something else to talk about other than her health. When I saw your question I revisited how I processed a similar question a few years ago when my husband was diagnosed (colon cancer) - I knew then that aiming for the future together was how to actively live. Like others said above, your best to have a Plan A and a Plan B…maybe even a Plan C…and create opportunities that work for you & your mum as her situation unfolds.
You have a lot ahead of you but know there are lots of great resources and members with lived experiences here on the site, willing to help support you.
Having read your post, I really get what you mean about being an overthinker. I’m like that, too, and while there’s nothing wrong with that, it can be problematic. My mind was doing the same kind of acrobatics yours is when my Dad was first diagnosed with (lung) cancer. I’m a bit of a security nut at times, and it kind of shook my foundation when he tapped me to be his primary caregiver.
Like the others have said, it’s going to be helpful if you can have a plan B (or C) going forward. This is daunting when you’ve never dealt with cancer before. Things can change, as you’ve already learned.
There are things they can do for your mom’s chemo schedule, and it’s apt to shift as time goes on anyway. So, don’t worry about that April date, and don’t be alarmed IF they have to postpone a treatment or two. I’m rather sure that that will all get sorted in due time.
Take some deep breaths, and try to calm your mind so you can evaluate (or reevaluate) your relationship situation (marrying) in light of the new information you have. Home is a destination, too - just sayin’.
My tale is a little different…
It is now over 3 years since I had a complete removal of my bladder and it’s little friends. Yes, there were scary things and worries and a 2 month stay in hospital.
But what has impressed me the most is how readily I accepted the changes in my life and my Outlook on my future.
@ham you And your brother sound so caring to be so involved in your mother’s care. I am sure it will make a difference.
I had stage 1 triple negative breast cancer another aggressive form. Treatment ended 3.5 years ago and I’m doing well - no evidence of disease and healthy.
As others have said you kind of need to prepare for the plan to change - I found it easier to take one cycle at a time. I had 8 cycles and my job was to stay well and to stay on track with my treatments. One round my fatigue was just awful and they decided to give me another week to recover. That did a lot for my mental health. I dealt with a variety of side effects that did affect how well I felt, but towards the end of each cycle I would feel pretty good and the worst days each cycle were days 4-10.
It does sound like your brothers wedding date is one your mother may not make and you might want to plan for that. But you and your fiancé could make plans - what a wonderful event for her to look forward to and even help you plan. It would give you something joyous and non-cancer to plan for.
I wish you all well, and hope your mothers treatment goes smoothly. Best wishes, Essjay
I've been eyeing this thread for a few days. In this case I'm the patient so I'm commenting from that perspective. We laugh in the world that I move in about how buying detergent can be a big deal. Will I be around long enough to use it all? The stats I was given at the beginning of my diagnosis were grim. But I took them and focused on living. So here is my first comment.
Live one day at a time. One of my friends likes to talk about “future tripping.” Sometimes we worry so much about the future that we don't recognize and enjoy the moment that we are actually in. So be present. Find gratitude in the small things that each day brings.
My second comment comes from a conversation with my military son. He is fond of quoting Dwight Eisenhower “No plan survives its first encounter with the enemy.” Plans aren't worth the paper they are written on. But planning is everything. Knowing what the road map looks like is important but what is really important is the thinking that goes into it. Sorting out values and “how important is it?” before it comes to the crunch makes the decisions easier when you get there. Having the conversations helps to manage the expectations that others have.
Let me leave you with noted military strategist Mike Tyson words on the matter. “Everyone has a plan until they get punched in the mouth."
Just a broad reply to everyone here. I am very thankful to everyone and appreciate the replies and comments. I know it's been almost 2 weeks since I originally posted, but it's taken me a bit to feel up to replying! I'm sure you all know that feeling.
Planning for "plan C" stresses me the f out, not going to lie (overthinker as previously mentioned) but I totally understand where you all are coming from. I need to learn to accept that, but the anxiety from that is something I have to control. Just typing this now causes shakes and an overwhelming fear, hence the reason it took so long to respond!
I know I don't have much to say right now, but I have reread each message and will do my absolute best to take it to heart <3
@Overthinker - so glad you found us but sorry that you needed to. I also felt very overwhelmed when my son was diagnosed with testicular cancer. It takes time to adjust to the reality of what you are dealing with but I found that once treatments started I had a sense of relief. Just knowing that there were doctors, nurses and medications that were doing everything they could to stop the cancer was wonderful.
Chemotherapy also was not as bad as we thought it would be. Try your best to take it one day at a time. Ensure to take all the medications prescribed to help with side effects etc., at the times they are prescribed. For example my son needed to take medication one hour before starting chemo. One time I forgot and he took it 20 mts before and felt very sick during that chemo, but not when he took it on time. You or your mom can call the oncology pharmacist anytime to ask questions.
Take notes when the pharmacist reviews all of these meds with your mom as they will point out things to watch for so you are prepared only if need be.
We will be here walking through this with you so you won’t be alone. Stop to breath when you get shaky. Slow deep breath in for count of 4. Then slow exhale for the count of 6. Worked wonders for me.
Self care is a priority for you to be the best you can for your mom.
This guide is a quick read for us caregivers.
You will work out what is best for your wedding plans. Congratulation’s and such a great thing for your whole family to look forward too. I always find writing a pros and cons list for important decisions helpful for me.
Keep us updated whenever you feel up to it.
Warm hugs for you and your mom.❤️🩹