I started a journal last year after my grandson was born. I’ve mainly done it so when I’m gone, my family will have something to remember me by. I don’t think I’m going anytime soon, at least that’s my hope, but I just don’t know.
Do any of you write in a journal for your family? Do you write how you’re feeling about your disease and when you’re gone or mainly just the happy times? The last thing I want is for my family to be more sad when they read it. They don’t know I’m doing it. I don’t want them to know I’m scared and don’t want my time to come when I have to say goodbye.
I enjoy every precious day and thankfully don’t think of death often because I’m too busy living. I don’t want to lie to myself, though. Some days it enters my mind, and I don’t want it to seep into my journal.
Written by
KMBL_
To view profiles and participate in discussions please or .
23 Replies
•
Hi KMBL_,
What a great question...
I don't keep a journal, but I intend to - does that count?
Just kidding, sort of...I bought beautiful journals when each of my children were born. My intention was to write about and to them throughout their childhoods so that I could give it to them at some point. I've barely touched them, so have a lot of catching up to do.
The idea was to include some fact/memories, e.g. "I was so proud when you won that award for xyz (and include some info)", and some just musings/sentiments about them and their lives.
Journaling about the disease, etc., is not something that I, personally, would find useful at this point, but I'm sure I'm in the minority re: that. I deal with/work things out in different ways.
But perhaps you can "keep two sets of books", like shady accountants do (!), and have different journals for different purposes? Maybe you can set up a free blog to write about your day-to-day challenges, to get things off your chest, and decide later whether or not to share this with others, but also have a journal, maybe handwritten, that you intend to give or leave to your family?
I keep a journal . But not to leave for some one to read. It is how I feel each day and what treatment I am in and any side effects. So I may just sat very tiered today of started new chemo ttreatment
Hi Barbara, Nice to know I am not the only one who does this. I note my meds, how I feel.
,if I have had probs with constipation or runny tummy. I also note how many steps, flights of stairs and active minutes I have done. I find it useful to compare how I felt at different times. Just about to start my fourth exercise book since I started my mets treatment in January 2019 😊
Yes it is important to know which meds affected you and how. Even if I take a nap, when you look back it forms a pattern, to maybe what days after chemo I know I may not feel well. By keeping the journal I noticed even though I am only on seventh treatment, I will run low fever and chills the day after and I take a nap. After that I am fine for the rest of the week. But I did notice food is not tasting great. So I write it all down. Real good day I just write feel good. It helps me.
Good luck with your journey. Oh I would not want my family reading. When I look back there were a lot of really bad days that I hide from them and say I'm good when they call or want to visit.
Great minds think alike. After I seen what she posted, I replied to her first before reading other's responses and I too mentioned keeping two separate journals. I got a kick out of your response that you "intend to keep a journal" and asking if that counts. My first laugh this morning.
Before my diagnosis I was feeling ‘not right’ and couldn’t understand why I felt this way...somebody (forget who) suggested I start journaling so I did but the novelty wore off after a while...in fact I totally forgot about it altogether
Anyway I came across it recently and had a quick peek...omg it was like the ravings of a mad woman...stuff I’d not thought of in years and quite nasty comments about my husband...I’ve thrown it away and didn’t read much of it
The point I’m making is that we change daily and I think looking back does no good...in fact it may make you full of regrets
Also if someone read it years later...it could be misconstrued
I’m not the real ‘me’ now with this disease so don’t want to be remembered like this...I want people to remember the fun loving healthy ‘me’
It actually helps, Barb. I think I will continue with the journal I’ve started and not write about my disease. I write in it when I do fun things with my family and milestones of the baby. I think I’ll keep it that way. It may also help me to think in a more positive way of what I still have now rather than what will happen eventually. Thank you.
You expressed it fine. I got exactly what you were saying. I said the same thing to my pain specialist. I said I used to be a different person before this and I forgot who that person was. I told her now I only have two emotions, anger or depression, but I am working on that. You know when your friends tell you that they no longer call because I am either very depressed, or extremely angry or complaining about the pain and that it makes it difficult for them to hear because there is nothing they can do. So that is something that opened my eyes because I get what they are saying.
On Thursday I have my first appt. with the psychiatrist who is part of the palliative team. He is a man and looks young enough to be my son but at my age 60, I expect most of them will be younger. I did not really want to meet with him, but my pain specialist wants me to since I am "depressed." I said I am NOT depressed bc of the cancer, I am more depressed because of the new experience with chronic pain and the impact it is having on my life. I said once the pain issue is resolved, I think I can go back to being more of myself and how I used to be.
That was just how I felt. I have a three family house and my 42 yr old daughter and 11 yr old granddaughter live on second floor apartment. My daughter has a pancreatic problem and is on only as disability. Not much income. We take care of whatever she can't.
I am so frustrated trying to get her to do her own bills if something happens to me who is going to do it. My husband is also helpless with money. They told me I should see someone because I was being such a bitch to them haha. And I feel 100% better. Don't seem to dwell on what will happen to them. Have will made and figure it is up to her to catch up and I will not be here to see it. My other kids did say they would see that they are ok.
But if you need antidepressant take it. Never thought I would need it but this cancer can really get you down and who wants to spend there last yrs fighting with family. We deserve to feel good and calm. So follow what the doctor says if you need something you will feel better.
Have always been considered pleasant. But I was getting depressed and crying. If my other three kids decide to sell house where do they go who will help with money. But I did ask for antidepressants.
Pain is the worst ever thing...just like you I’m totally fed up and depressed
Docs just dole out stronger pain meds which make you feel vile
Last night I thought I’d start back on the slow release morphine and see if they might help (only 10 mg dose of zomorph) took it at 8 pm and one at 8 am when I woke...then fell asleep and when I woke I was soooo lethargic...can’t live like this...don’t feel ‘real’
I so understand why you’re depressed...it’s bound to have that effect
I did try Citalopram for depression but again the side effects were dismal and I couldn’t trust myself to do anything sporty in case I had an accident
Let me know what the psychiatrist says...I’m interested
KMBL, I don't keep a journal, but my sister-in-law did. She made sure that she wrote at least one blessing in it each day. For instance, I am thankful that I got to pick a bunch of daffodils for the kitchen table today, an acquaintance called today just to say hello, my daughter came over an vacuumed the house, etc. It was important to LuAnn that she found something good in each day. She talked about other things too. She died of MBC with mets to her lungs. The same thing I will die of unless mack truck hits me first. Blessings Hannah
Maybe you could keep two separate journals? One for your family and your happiness and memories of certain special times, like the birth of your grandson. But a journal should also be something you can write in when you are feeling down but do not want to let you family know or you don't want to discuss with others so you can release some of the anger and fear you are going through.
I have kept a journal since I was 20. I did not write in it every day. Actually, maybe two or three times a year. I am now 60. But for me, it was also about the bad things going on in my life and how I felt so alone. I usually wrote in it when very very depressed and sometimes one writing could be several pages long.
Usually, when I write in it, I never go back and read the entries I have written previously because it was usually during very bad times in my life and I don't want to be reminded of them again. My friend who I trust I told her where it is (she will be in charge of everything once my journey is over.) I told her not to read it, but to have it burned or discarded. I trust her 100% that she won't read it. It was a way for me to vent when I was in dark places throughout my whole life. I would feel better once I wrote it down.
Maybe once you write in the first journal first about your fears, worries, anger about what you are going through, then you will be able to write in your family journal about the happy times and it will be easier since you already wrote your fears down in the first journal and got it out of your system, so you won't worry about your fears seeping into the journal you would like your family to have and be able to read. It may then be easier to write about the good times then.
That being said, there are many many women who live past the anticipated date they were told or that they thought they would still be alive so you may have many more years left and will see your grandson go to school, college, etc. Congrats on the birth of your grandson!
Thank you. I have to say at this point, I don’t get sad often. I think just because my last scan showed something, it got me thinking. If I do feel I need to write something I don’t want my family to see, I will start that second journal. I let my husband know I haven’t been feeling well for the last three days. The fatigue is great, and my stomach has been really nauseous. It feels like the food is stopping right under my chest bone and not moving through very quickly. I seriously don’t think it has anything to do with the new finding, as it is a very tiny spot. I think my meds are messing with me this month. It doesn’t happen every month, so it’s hard to tell. My cancer is in my stomach, so I have no idea if it’s just a blip this month with the meds. I feel I do have quite a good life ahead before the end. I can’t even begin to say how much I appreciate my husband and try not to make him worry. I don’t want to hide it either. It’s a balancing act for sure.
Thank you so much for your congratulations on the birth of my grandson. I honestly wasn’t sure if I was going to become a grandmother because my daughter had said what I had said before I decided to have her. She wasn’t sure if she wanted children. Seeing her with him makes my heart so full. She had no idea it would be this awesome to be a mom. My grandson has the best personality and is always so happy. I get to watch him a few times a week, and it’s the highlight of my week.
Thank you for your suggestion. I will definitely think about two.
oh to have the time :). I'd love to and when I finish working full time, I'll definitely keep a journal - I love the idea that someone's said about writing a blessing in each day, you don't always think about what you're blessed with, I guess it can be hard sometimes with what we have to go through - its easy to get focused on the bad stuff, but maybe writing down the nice things and reading them back could remind us of the positives. Thanks for the ideas everyone who's posted. I do have a diary at the moment but just with all my medical - and other - appointments in and I write side effects in there so I can look for trends.xx
I've been journaling most of my life. Like you at first, I bought lovely bound journals but soon found I didn't write in them. Switched to college rule spiral notebooks and the words, thoughts, feelings just poured. Something about the "too pretty journals" discouraged my writing.
As others have responded, I wrote all sorts of things, memories, aspirations, humorous events but many during earlier years were during very difficult times.
A few years ago, decided to destroy all but the more uplifting sections because I didn't want my daughter to read of those dreary difficult times nor did I want to be reminded of them either.
I continue to journal in plain ruled spirals by hand. Something about ink vs computer type seems to best suit me. However or whatever you choose to include in yours, I hope you'll find the mere act of putting your thoughts or feelings on paper will be of benefit.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Who has ESR1 how are you doing
Faslodex/Fulvestrant - how long on this treatment alone?
How is everyone doing today?
Keeping a job with stage 4 BC with bone mets?
How do I get through tomorrow. Results of first 3 month scan Wednesday. 
