Log in or Register to participate in these discussions

finally logging on and introducing: me.

finally logging on and introducing: me.

Posted by LaughingLilies on Apr 14, 2020 1:07 am

Hello! I have been going back and forth in my own head about posting posting for a long whlie, making up a myriad of excuses of why not to. But for once, on this evening for really no particular reason, I finally feel like posting. So here goes. I have yet to read through all of the various forums, but I'm sure there are a lot of useful tips and unique stories out there- I'm excited to read more soon! 

In any case, my [cancer] story is pretty simple. I have T cell lymphoblastic lymphoma, and am currently on my last few cycles of maintenance chemo. It has been a journey of a 2.5 year long protocol. After a month of tests and other medical shenanigans I started in for the long-haul at the hospital, lost my mind and all of my muscles, got admitted back in to the hospital way too many times to count and half lived at the cancer centre, and now I can finally see a dot of light at the end of this tunnel. 

I had originally written a really long post, but realized I was rambling and it made little sense. Moral of the now deleted story is: I feel so confused and unable to express myself (which, I acknowledge, is not just cancer and there is probably some trauma-feelings meddling up in there as well...). How do you talk about cancer without feeling guilty? Or selfish? Or frustrated? Or embarrassed? I could use suggestions.  

 

Re: finally logging on and introducing: me.

Posted by Sew On on Apr 14, 2020 1:56 am

The best advice is just to write and talk.  Even if you think it is rambling is can help to get your thoughts or emotions out.  We have all been in there and understand and are here to support one another.


 

Re: finally logging on and introducing: me.

Posted by MarnieLee on Apr 14, 2020 9:26 am

My daughter was just diagnosed with T-Cell Lymphoblastic Leukemia in late February 2020. She is 25 and undergoing treatment now, and waiting to hear about a Bone Marrow Transplant.  Was a BMT part of your treatment? I am curious because you said you are 2.5 years in and on maintenance chemo. Best wishes for your continued recovery.  I think you should keep writing, it may help make sense of it all. 

Re: finally logging on and introducing: me.

Posted by LaughingLilies on Apr 14, 2020 2:35 pm

Sew On‍  thank you for your encouragement!

MarnieLee‍ Wow, we are about the same age and I was also diagnosed in February! What a strange coincidence. A BMT was immediately discussed for my treatment, and I was even lucky enough to have found a perfect match donor, but I just narrowly escaped having to get it done. It is a major procedure, and I do not think that the physicians make that decision lightly. Is she also on the DF protocol? I wish your daughter the best. 

Re: finally logging on and introducing: me.

Posted by MarnieLee on Apr 14, 2020 10:19 pm

Hello again . . . 

I am not familiar with the term DF Protocol.  I believe she is on the ALL 13-01 Protocol and they seem very set on the BMT.  There is something about her sub type of ALL that makes them say she has to have it - maybe the “early precursor” part?  I feel a little bit disjointed because of COVID and I am not allowed in the hospital at all now.  Christie was diagnosed in San Francisco on February 27 after 4 or 5 days of testing and did her Induction round of chemo there.  We returned to Canada as this is our home on March 20 to resume treatment in Vancouver.  It is such a journey. 

Best,
Marnie 

Re: finally logging on and introducing: me.

Posted by Cynthia Mac on Apr 15, 2020 7:59 am

LaughingLily‍ , wow, I’m so glad you spoke up now! Your timing is impeccable, right MarnieLee‍ ?

Sew On‍ ‘S suggestion for writing out your feelings is a sound one. I worked my way through a book called The Artist’s Way, and it advocated writing 3 pages per day, just to “dump” your thoughts out onto paper. That was 20 years ago. I still have my journals, but don’t refer to them very often. I don’t journal every day now, either, but it was very helpful to do it. Well, that’s not entirely true — I just journal differently now. I have different books for different things - a journal of my caregiving for Dad, a kitchen journal, a sewing room journal, a stitching journal... the list goes on.

Chemo brain is “a thing,” so don’t be afraid to put supports in place to help you stay on track. I’m using Google Calendar - I can colour code my Dad’s appointments so I can see at a glance whether what’s coming up on a certain day relates to me or to him. MY calendar is pretty “wide open” these days, what with the quarantine!

You’re getting near the end of your treatments, and there is a group here called Living Well After Cancer — you might find some useful information in it. Welcome, and congratulations on making it this far through your journey!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: finally logging on and introducing: me.

Posted by LaughingLilies on Apr 15, 2020 3:18 pm

MarnieLee‍  I'm sorry you aren't physically able to be in the room with Christie, that seems like it would be very frustrating. I am on the Dana Farber protocol, but I dont know what the numerical correlation is or if there even is one? Whatever her protocol may be, I hope her journey goes as smoothly as possible.

Cynthia Mac‍ Thank you for your suggestions! 

Re: finally logging on and introducing: me.

Posted by Whitelilies on Apr 15, 2020 5:06 pm

LaughingLily‍ Hello Lily from another Lily! (my name is Lillian)
This is just a simple hello.....sending you warmest regards, and wishing you and yours strength.
Talk when you feel like it.
Cry when you feel like it.
Share when you feel like it.
Ask for help when you feel like it.
Laugh when you feel like it.

Take back the control, in small bits.

Whitelilies

Lillian

Re: finally logging on and introducing: me.

Posted by Lacey_adminCCS on May 25, 2020 7:18 pm

LaughingLilies‍ 

It's been a while since we last hear from you. 

Is that dot at the end of the tunnel any closer?

I hope you are doing well. Please feel free to vent anytime.

Lacey