New Journal

[itsallgrand]

I felt out of sorts yesterday and this morning again.

At work, I could barely keep it professional. I feel like my hard work is for nothing sometimes.

And then later, it was a nice day weather wise, but seeing everyone in their little outfits upset me somehow. Made me feel sad.

I just wanted to curl up in a big t shirt and sleep. But then my brother asked if I wanted to go with him while he got a tattoo. I wasn't for the tattoo, and was kind of surprised he had it booked right away, as he had mentioned it casually and I thought it might not happen or for a while yet. Thought it was in conception stage. Anyways I went, even with mixed feelings, because he seemed set in it and so I may as well make the most of it and share it with him.

Then after, he was full of energy and asked me if I'd like to go running , or hit the gym, and I was just dead tired. And I'd told him earlier. So it mildly irritated me and I was a little short in my reply.

 

On another day, water off a ducks back and I'd laugh. Yesterday, I felt myself withdrawing a bit from him.

I wouldn't say it to him like this, but damn, that stupid tattoo upset me. I wish he hadn't done it.

 

It's ridiculous, I know, but it made me feel sad.

[itsallgrand]

Whoops. Not my brother (damn auto correct!), my boyfriend. Sigh

[imsuperman]

I don't think it's that ridiculous. If you're feeling a little frustrated at work that can carry over into other areas, and anyway, it's not like you have to like a tattoo.

 

Glad to hear your mom is doing better and am hoping for good news.

[itsallgrand]

I really appreciate that, Super.

 

I think you are right. Work and stress and lack of sleep and time to myself lately all rolled together, had an off day. I don't particularly care for him getting that tattoo, but that's ok.

 

Mom has been having a good couple of days. Maybe because of that too in part, I don't feel like there is something to urgently do on that front until her next appointment now, so I had a minute to breathe. I refuse to be stressed or tired around her, and try to keep cheerful, so maybe that's playing a part too.

 

Your well wishes for her mean a lot.

[quirky]

IAG, I haven't been here for ages but checking your journal is the first thing I do whenever I return, so sorry to hear about your mum poppy and I hope you find ways and strength to carry all this in a nurturing way to yourself and mom ((hugs))

 

I was very excited to hear about your skateboard, is that what you bought? Last week I decided to buy rollerblades and try and go on them to college or work even. I have seen occasionally in the centre of my city groups of skaters and always felt I wish I was part of them! I will be purchasing a pair this week

[faraday]

I really appreciate that, Super.

 

I think you are right. Work and stress and lack of sleep and time to myself lately all rolled together, had an off day. I don't particularly care for him getting that tattoo, but that's ok.

 

Mom has been having a good couple of days. Maybe because of that too in part, I don't feel like there is something to urgently do on that front until her next appointment now, so I had a minute to breathe. I refuse to be stressed or tired around her, and try to keep cheerful, so maybe that's playing a part too.

 

Your well wishes for her mean a lot.

 

The being happy, and not tired or stressed front is hard. I do that with my mom too- I don't want her to feel bad about being sick...and it means I'm tired, and grumpy, and stressed at home. It's hard. It's draining. Jay and have been fighting...we never fight. I think I'm super emotional and spilling over, and he doesn't get it, and doesn't know what to do with it because I'm being so abnormal.

 

Hopefully our moms both have some good days and we can not be fake for a while so we can relax a bit.

[itsallgrand]

Hi quirky! I love seeing you pop in

Yes, it's a longboard, so a lot like a skateboard. I got down a hill in my first day with no falls, which I'm told is good for a beginner. Learning turns now. I'm as beginner as they get lol but it's been a lot of fun so far. That's awesome about you taking up roller blading!

 

Faraday, going through a lot of the same over here. It's a lot of emotion and stress. It's hard on my bf and I, there's been days the emotion runs high. I'm trying my best to balance everything and everyone. Overall, it's making us stronger. And he's been great- I really love seeing the man he is when things are tougher, he's the real deal. Very grateful for that.

 

Going to write more later but wanted to say thank you.

[itsallgrand]

I cried so much yesterday. After work, the bad and I got groceries, made dinner together, and cuddled watching Netflix for a few hours. It's been a while since we just veg like that. We were watching House of Cards and then the water works started. I've been so sensitive lately. Watching someone suffer, even though it was a fictional character on tv, set me off.

 

Moms chemo starts next week. She's at home now. We finally got her full diagnosis and treatment plan a week or so ago. Stage four, devastating news. It was so. Hard. I've been processing and researching. Exploring options

 

One thing is for sure. She won't passively resign herself without a fight. We all still keep hope. And we are going to make the most of time.

[Cheetarah]

I'm so sorry, IAG. It makes me smile to hear your mom is a bull. Sending lots of hugs your way.

[faraday]

I'm so sorry (((((IAG))))). I totally get the being extra sensitive and having days of crying. It's hard to function.

 

Where is her cancer? Have the doctors given her the treatment plan yet?

 

I'm here for you...feel free to ask questions or pm me or whatever. Mom has been through surgery...and although she's only done 3 chemos, I feel like a friggen expert in side effects...and I have a ton of really helpful tips and advice from a friend that I can pass along to you.

 

All I can say is...the crying eventually stops. The sensitivity is dulled a bit over time...but I don't think I'll become myself again until this is over. It's mentally exhausting.

 

I'm putting out positive vibes for your mom, and you're in my thoughts. (((((IAG))))))

[Seraphim]

I am so sorry sweetheart . Hugs.

[itsallgrand]

Faraday, the cancer is in her lung and her liver. It's inoperable. Basically, they told my mom they do not expect her to survive more than six months without chemo. And the treatment plan, chemo treatments every three weeks for six treatments in total ( if the chemo goes well), is only to lengthen how long she will live, not to expect recovery. They presented palliative care as an option right away. Mom - and my brother and myself - said no, that's not happening.

 

So that's what they presented to mom, to us. But my brother is a nurse, and I worked in health care previously, and we have an idea how the system works. It's imperfect, it's beaurocratic at times. It was extremely upsetting , I felt like mom was dehumanized in a way. I had to get over that and collect myself, so I can help advocate for her. Still do, I don't know ill ever get over that people have to fight to be treated as a full person in a flawed system.

 

We are looking into some newer treatments. Seeing if she qualifies. If it's worth pushing. In the meantime, asking a lot of questions and info gathering. Working to do what we can outside the system too- diet, common sense things. Learning from cancer survivors.

 

I appreciate the support! All of you. Anything we can share, I'm all for.

 

And faraday, you and your mom are in my thoughts too.

 

Tonight I get a little alone time. Building my own reserves. I'm confused, heart broken, but... I'm strong too. I made the right choice investing in myself over the years, so I have some resources to drawn on and not a total hot mess

[quirky]

I'm so sorry IAG, I wish I had some way to make it better for you, I hope she qualifies for some of the new treatments, stay stong ((hug))

[tiredofvampires]

IAG, huge ((hugs))!!

 

I know what you mean about not being treated like a full person, and dehumanized. Why is it that in the field of medicine, where people should have maximum say over their body and health, be listened to and be regarded with the greatest of respect, they are in a way herded around like so many cattle and one becomes just a number? It's so hard to find anything enlightened in the system to work with, if you can find it at all. I find so many doctors treat their patients like tasks to complete, not living, breathing beings with wishes and desires and fears. And it's at a time when people's spirits need the most care.

 

Well, I know you will do everything you can to be her advocate so you'll be able to have peace at the end of the day. I would start researching some alternative medical options with integrative doctors/practitioners who focus a lot on complementary cancer care. If your mom is getting chemo, boosting her immune system is very important (since chemo destroys the immune system, which is needed to fight the cancer, more people die of the infection complications than the cancer, especially when it's stage iV), and standard medicine can't do that.

 

You are in my thoughts, sending you healing energy. It's okay to be emotional...and I would argue, perhaps to not have to keep it all together all the time with your mom. You are sharing an experience with her, and being authentic and real is a gift you can give. But you know her best. Just be sure to let yourself have your moments to grieve without trying to change it.

[tiredofvampires]

Oh, and I was tickled to see that video of the longboard...because when you first mentioned it, I was truly baffled. We have that word here, and it only refers to one thing -- a long style of surfboard.

[faraday]

IAG, I read your update a few hours after you posted it, and I've been trying to think about how to respond since then.

 

I'm so sorry that the cancer has progressed to this stage. I do know what it feels like (initially my moms prognosis appeared similar) and it's completely gutting. I'm so sorry you have to go through this

 

I don't know how much diet will help at this point. It can't get though. My mom has lost just under 40 pounds, so we haven't been focusing on getting vegetables into her so much as getting calories into her. Although we do purée veggies into sauces and blend fruits into her smoothies. For us the focus has been finding things she enjoys. Right now she loves pickles And rhubarb, which she always hated. I'm making her rhubarb cookies today.

 

I'm also trying to source pot cookies/brownies/butter...to help stimulate her appetite. My mom is is dead set against pot asked me to find her cookies.

 

What common sense things are you implementing? We go for walks and spend time outside...it's good for lifting her mood.

 

Does your mom live with your dad/a partner? Who is providing care for her at this point, or who will be?

 

]

 

Have you seen these cards? I love them.

[Miss Firecracker]

Hi there, just happened to read your latest comments and see how you were doing. I am so sorry about your mom. I have only read a few comments but will go back to the beginning and read it all.

 

My older son was diagnosed with testicular cancer about the end of March and immediately had his testicle removed. He has been through a full round of chemo that began three weeks ago. Tomorrow he begins round two. I shaved his head this week because his hair began falling out. His chances are pretty good but we will always worry.

 

My dad had prostate cancer years back and had it removed. His PSA count went up enough a couple of years ago that they did local radiation. He has to go back every six months. Right now it's just showing up in the blood tests but it is THERE. I hate cancer, both my sons have now had it. And it is just so hard to believe.

 

You have my deepest sympathy, IAG!

[itsallgrand]

Reading your comments, support, kindness and sharing really moved me. Thank you so much for your words and thoughts. It means a lot - I know it's not an easy topic to comment on. I appreciate it so much.

 

Quirky, your caring means more than you can imagine at a time like this.

 

TOV, I knew you would understand my frustrations with the system and my approach to this. Everything you have suggested is right in line with what we are doing. It just feels like a weight off to have someone understand to the point where I just have to mention it, and you get it.

 

Faraday, you are a huge sweetheart . Mom dropped a lot of weight in hospital, and getting her to eat and sleep has been is a struggle. There were days, and I'm sure there will be more ahead, where I stay with her making sure it happens. At first, it was anything she would eat. Unfortunately her favorites aren't exactly healthy- a steady stream of coffee ( timmies only!) and fried foods. It was to the point where she'd wake up from a medicated haze, and only want coffee. I will admit I'll do anything for her to get well- I brought in smoothies and whole foods and she bribe her with coffee. Have some water first, some smoothy, protein, then she'd be too full to fill herself up with junk and be content with a little bit of coffee.

 

I've pushed for the prescription of pot. So it's there if she needs it, wants it.

 

Common sense stuff- cutting out the processed sugar and fatty meat- there are solid studies on this. Making sure she gets adequate nutrition - especially with chemo coming up. The hospital was serving up gross soggy veg, fatty meat, gravy, boost -- all glucose and fat!

 

And getting mom to a naturopath. Making sure she is hydrated, that she moves and tries to keep some musculature, that she is properly cared for in basic ways. - her skin, keeping her relaxed, making sure she has support and doesn't fall into a depression.

 

It's a lot, and every day is me fighting to push somebody to get a move on something.

 

She has a live in partner, and he is helping but he is stretched thin with a full time job and a farm. Who is caring for her is a rotation of us - her bf, me, her sisters. My brother when he is in town.

 

Found out today that she does not qualify for a newer drug there was good promise in. No time to get too down about it, we keep looking for others.

 

Miss firecracker, I'm sorry for all your family has been through and is going through. You sharing that, thank you. I hate cancer too, it hurts so badly how many have to go through this. You helped me feel less alone and it means a lot you'd reach out like that. I feel we are all part of this community now, and we all have to look out for each other as we can. Your family will be in my thoughts too.

 

Right now, I brace myself for how mom does with chemo. Hoping her immune system is strong enough, thinking about keeping her safe and how to best care for her.

 

You all are the best

[quirky]

Man, this just sounds so difficult.. I truly admire you for all you are doing and keeping it together. I am no expert in cancer and have no practical advice here but I care for you and just sending strength and warmth ((hug))

[itsallgrand]

Thank you quirky. I'll take all that warmth!

 

I was thinking about what you said, TOV. About not having to act strong around her, to show my feelings and it's an experience to share. I think there is something to that. And I've shown more genuine feeling around mom luring this than well, ever. When we first heard the news of her prognosis, I was the first one she told. And I hugged her and cried like a baby in her arms with her. We were both crying and consoling the other! I never would have done that with my mom even five years ago, because I didn't feel comfortable enough to be that vulnerable with her.

At the same time, after that, she started to panic saying she was worried about me. I love my mom with all my heart, but the reality is for most of my life my mom has been emotionally unavailable for whenever things get hard. She just doesn't have the coping mechanisms, and I think this is one of those times. Where she needs me to be there for her, but can't be there for me. I'm ok with that now. I see the signs. So as much as she can handle, yes I want to be real with her about my feelings. But her well being is the priority, and I have other ways to cope without her having to know all of them, the ones I think will only make her recovery harder or take away from her maintaining her own mental health.

 

I've got myself, I've got my friends, I've got my boyfriend, I've got the gym and working out and here to spill out into.

 

I appreciate the reminder to not emotionally distance myself from her in an attempt to be strong though. I've used that trick in the past, with her and others, and it's not something I ever want to repeat. Trying for balance I guess?!

 

Speaking of exercise, it's a huge reprieve for me. It has helped me through so much.

[itsallgrand]

I spent several days with mom, camped out beside her on the couch. It's been rough, but it looks like she is on the upswing now.

Yesterday was my birthday. My thirties feel like they are flying by. I want to savour every year of it, these have been some of my most rewarding years of my life so far. I feel like more of what I enjoy now is earned- it's mine. There's something satisfying to me about that. I still feel like a pup in so many ways, but a pup with a greater appreciation for life. All of it. Even the more difficult stuff, there is something to find in that too and I feel more awake to that.

 

I had taken time off to camp, as that was my birthday wish, but that had to be postponed obviously. Though mom insisted in her very stubborn way I go be spoiled and enjoy myself yesterday. The boyfriend did a good job of that. And I felt acknowledged and cared for all around - it was nice.

 

My family, those I'm close to, really like my bf. And my bfs family really like me - it's the first time I've ever felt so fully embraced and genuinely liked by a partners family like this. Not like I've had very bad experiences either, but this feeling like I've been taken in as family - and my bf was actually tearing up about how much warmth my fam has given him too- yeah, it feels special.

 

I feel full, like life is full and I'm not wanting for anything really , despite what is going on. Going to soak every last drop of it in.

[Seraphim]

Awwww happy birthday sweetie!!! And what a fitting day! All Canadian women got the opportunity to vote on that day 1918 .

 

I'm glad to hear your mom is on a bit of an upswing I keep praying for her all the time .

[itsallgrand]

😀 I love the fact my bday is the day women got the right to vote! Thanks Vic- for everything

[tiredofvampires]

I appreciate the reminder to not emotionally distance myself from her in an attempt to be strong though. I've used that trick in the past, with her and others, and it's not something I ever want to repeat. Trying for balance I guess?!

 

Yes, and it sounds like you're working the balance pretty well. Being able to show your emotions and some vulnerability doesn't mean having to "dump" on her or make her feel responsible for you. It just means being able to show her you are not afraid to experience the range of emotions this situation brings. You can reassure her you will be fine, without sacrificing expressing yourself. If you are more open with your emotions, she will likely allow more of hers to come out (like the fear she has about you -- that's in there anyway, so by crying in front of her, that allows her to bring her own worries to the surface, so then you can address them, perhaps help her get some peace about things she may not have wanted to air.) I'm sure that your judgment will be sound.

 

That's great you're trying to get some good nutrition into her, and have a naturopath in the picture, as well as medical pot. I think these measures will give her a real edge. Isn't it ridiculous how hospitals feed people? When you need your nutrition the most, you're eating mush and reconstituted "food"! It's just about as bad as plane food.

 

Happy birthday -- ours are apparently just days apart (mine was last week). I'm happy for your growing sense of fullness.

[Cheetarah]

Happy belated birthday, IAG!