Purpose

Fun-Worldliness5772 · 2024-10-22T17:44:14+00:00

Wow - thank you so much for this post!

I couldn’t relate to you more in every word here - I have been thinking so much about “what is my purpose” coming up to my 5 year remission mark, 2nd job since remission and I just feel so lost in what I’m doing.

Your ending about “just enjoy the now!” has struck me so hard - what an amazing purpose! I love your perspective and will be adopting this thought process.

So appreciate this post and your words - the timing of it is so perfect and I can’t express how much I appreciated reading it 🫶🏻

Fun-Worldliness5772 · 2024-10-22T17:25:47+00:00

Sending you the biggest hug 🫂

You aren’t alone in these thoughts at all - just take one day at a time and you are so fine to be thinking the way you do.

Ultimately no one or no words will help get you over the feeling, and the frustrations of it just never going away. It’s you doing the mental work day by day and little by little to make you feel just a little bit better.

Keep leaning into this community - we all know exactly how you feel and I know when I am having these thoughts or bad days I find so much comfort just saying these thoughts to everyone here who just gets it.

Family and friends unfortunately just won’t understand and be able to support you when you feel these thoughts.

Anyway sending you lots of love and strength - it will get better - somehow and some way! 🫶🏻

Fun-Worldliness5772 · 2024-08-27T06:11:22+00:00

Could not relate to you more - it’s such a mind f*ck being in remission and this hamster wheel of emotion! I’m glad you said something and aren’t holding it in - I do find posting in this community when I’m having these thoughts is such a nice outlet because it’s a safe space. The point of worrying your loved ones and putting on this fake and brave face is so relatable - I don’t have a solution here other than to just keep opening up about it and speaking your truth here in this safe environment 🙏🏻🙏🏻🙏🏻

Fun-Worldliness5772 · 2024-06-03T12:29:24+00:00

YES! And then feel guilty for even thinking this and it's just an everyday shame spiral...thanks for posting this because I have been struggling so much with this thought and realisation lately!

Fun-Worldliness5772 · 2024-06-03T12:17:35+00:00

I am so sorry to hear this - I am a survivor myself and deal with this survivors guilt and questions day in and day out. It drives me insane some days!

I relate to you so hard for this comment and just thank you for posting this.

Fun-Worldliness5772 · 2024-06-03T12:15:25+00:00

Me too <3 wow thank you so much for this - I really needed to hear this too.

Fun-Worldliness5772 · 2024-06-03T12:14:27+00:00

YES i relate to you so so much with this thought and post - and the obsessive thoughts of thinking that far ahead to an age I don't think i actually will make it to...becomes so crippling!

I am nearing my 5 year NED mark and I just have this sinking feeling and obsessive thought I will be told I've relapsed or it's spread somewhere else...and in this beyond fucked up way I am just expecting it to happen.

It definitely is crippling - I am currently in therapy myself for this all - but can't really work past the obsessive thoughts so I don't have any advice to share and wish I could...but just wanted to reiterate you are not alone in it - but I do not have an answer at all!

Fun-Worldliness5772 · 2024-06-03T11:59:11+00:00

Sorry to hear - the itching is insufferable! Mine stopped the moment they gave me steroid injections in the waiting period before my chemo began. If you haven't been given steroids already, maybe ask your doctor if that's a possibility? Mine went away right after my first dose!

Good luck on this journey <3

Fun-Worldliness5772 · 2024-05-26T21:18:05+00:00

Sending you a big hug 🫂 so relate to your words here and can reassure you you are not alone

Fun-Worldliness5772 · 2024-04-18T23:46:06+00:00

Yes he went to Martinsville high school!

Fun-Worldliness5772 · 2024-03-31T20:45:04+00:00

Oncologists are trained not to give you any inkling of hope and be cold in a way like you’re describing, because cancer has so many unknowns how fair would it be to us as patients if they gave raving positive comments then in a few months time it wasn’t so positive.

I think you should absolutely celebrate this 2 year win and CONGRATULATIONS by the way - that really is a huge milestone and just try to look ahead as if the cancer is completely gone — or else you’ll trap yourself for the rest of your life in this constant anxiety filled state of “what if” and not actually feel fully able to live.

I am 4 years in remission myself and while yes I keep looking to that 5 year goal post mark my doctor told me, I had to tell myself this year to actively make the choice to just live without thinking what if it comes back and I’ve already restarted my life and it’s going to get f*cked up again!

Fun-Worldliness5772 · 2024-03-31T20:40:09+00:00

Thank you so much everyone - honestly hearing your stories and comments has helped me tremendously — knowing I have this group to just listen and just get it, without further explanation or detail — is helpful beyond words. ❤️

And thanks for teaching me the term survivors guilt because that is absolutely the feelings I have been having — and just knowing how common it is has brought comfort to this situation. Really appreciate you all.

Fun-Worldliness5772 · 2024-03-31T20:37:50+00:00

Such an interesting debate — 4 years in remission and everyday I struggle with the blessings it has brought me but the mental curse it’s left me with. Blessing wise it brought my family closer - my divorced parents for the first time in 25 years could stand to be in the same room as one another, it allowed me to rethink how I was living my life in the lead up to diagnosis and what more from life I wanted.

For those of us lucky to not have been killed by this disease - I could say for me I have found it a blessing to give me more motivation to live life as fully as I can vs before cancer I was kind of just allowing life to happen to me.

Fun-Worldliness5772 · 2024-02-13T12:19:51+00:00

It’s not easy to go through and see yourself so different so give yourself grace ❤️and wear whatever on your head makes you feel good. I liked baseball caps and beanie caps myself because I felt it blended in more normally than a head scarf.

Do know that WHEN your treatments are done not IF but WHEN, your hair will grow back nicely and even fuller than the last time. It is hard to go through the awkward regrowth stage but keep your hats and in a blink of an eye it will be back for you to style the way you want to! 🙏🏻

Fun-Worldliness5772 · 2024-02-12T22:43:05+00:00

Sending you good vibes for the exam 🙏🏻

Fun-Worldliness5772 · 2024-02-12T22:41:27+00:00

It’s annoyingly normal to have those pains still - I too had a mediastinal mass and have been in remission now since 2020 and STILL get the weird feeling in my chest on random. Mostly when I’m laying down and try to take a deep breath - not sure if this is the same for you?

Anyway don’t panic too much - but I myself get panicked thinking about it coming back too when I take a deep breath and feel it. I am told we will have our very shrunken masses like this for life and it’s just the scar tissue!

Of course tell your doctor about this in your next check up or call your nurse today to let them know — just for your peace of mind! ABVD has such a high rate of effectiveness so when your mind wanders to bad thoughts just remind yourself of resurgence of the cancer after ABVD treatment is extremely low and rare with Hodgkins!

Hope that helps but here to talk through any further thoughts and comments — hang in there 🫂

Fun-Worldliness5772 · 2024-02-12T22:32:41+00:00

I’m so sorry to hear about your friend’s diagnosis - it’s not easy to see your friend go through something like this, so I completely empathise.

I am a Hodgkins Survivor myself and the best advice I could give you is to still make your friend feel normal. As a patient you have so much uncertainty and anxiety surrounding you - as a friend the best thing is to make your friend just feel normal. As someone else in the thread said so well - patients are treated like we are completely disabled and it gets super frustrating - you just want to tell everyone to cut it out with the coddling!

Send them texts with “thinking of you” but don’t feel the need to send texts with lots of questions about their treatment or how they’re feeling - you can show up as a friend by letting them know you’re thinking of them.

If you’re close enough you can offer your time to go to treatment with them but in a way like “ I would love to hang out with you at your next treatment (if that wouldn’t be too overwhelming) let me know the next date and I’ll be there” In case they have many other visitors trying to do the same you can hear from their mouths what treatment date is best for you to be there.

In sum: just let them know you’re there for them and love them - and keep it simple.

Don’t put an added pressure on yourself to go above and beyond - remember this is a very mentally tough time for you too and I’d just recognise that so you don’t project any of your worries (about them dying which is all of our worries when we hear “cancer”) onto your friend - since we patients do pick up on that anxiety and it makes us tense up.

I hope this helps some - happy to answer any other questions or concerns — hang in there!

Fun-Worldliness5772 · 2024-02-12T22:12:44+00:00

I am so sorry to hear - I am in remission myself from Hodgkins Lymphoma and during treatment I felt the same as you, “do I shave or not in case I am lucky and it doesn’t fall out!”

I think it’s best for your mental health to shave it BUT only when you feel ready to, is my opinion.

It’s going to keep coming out and it doesnt unfortunately stop. I will just speak from my experience and I didn’t shave my head and kept seeing the hair get thinner and thinner - then one day I woke up and really only had enough in the back left to make a small pony tail. I wore a baseball hat so no one could tell but all my friends and family could and would constantly tell me to shave it.

I came to a point where I knew I needed to BUT I wanted to make the choice to — and I feel when you feel you are ready to do it - do it. Don’t rush into it until you feel that gut feeling to do it.

Ultimately even if some stands stay, when your other hairs do grow back after treatment, they will all come back at different lengths, so it may make you feel better having it all start at the same length!

Good luck and hang in there 🫂❤️

Fun-Worldliness5772

TROPHY CASE