Within the Family

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aleukhin
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Within the Family

Postby aleukhin » Fri Feb 04, 2022 3:44 pm

Dear Friends, today is a special day for most of you - World cancer day, lt me out of the shadows. My name is Alex; being a cancer patient and survivor since September 2015, I often visit this forum.

I remember opening a forum the first and stuck reading your inspirational and sad stories, recommendations, and reflections. This is a place where I found ASCO guidelines and used them to compare this to my treatment plan.

And I wanted to thank you for your contribution to the common cause - the battle with cancer.

From my side, I want to contribute a documentary film I'm working on - Within the family. - "https://withinthefamily.film/" -

The purpose of our film is to study the specifics of the intrafamilial relationships of oncology patients. The film can be used by professionals of helping professions (psychologists, social workers, medical personnel) of oncology centers in carrying out educational and correctional work with oncology patients and their families.

Cancer affects all aspects of the person's life, and therefore, it cannot help but influence intrafamily relationships. The disease's course, the differences in symptoms, and the specifics of treatment measures that distinguish different forms of the disease are perceived differently by the patient and their surroundings.

Receiving a diagnosis the most severe stress. In such a situation, relatives and friends can become a resource for a complete recovery. They can see the opposite - it can be an additional stress factor, worsening the patient's emotional state and, consequently, reducing the chances of recovery.

I want to hear your voice - what to think on this matter? Share your challenging relations with family and friends during treatment? How do your family/friends help you or, maybe, distracted?

I hope you will find this project somehow useful and I would appreciate any suggestions and comments.

Alex
m 35yo (now 42)
diagnosed 09/2015 rectosigmoid colon cancer Stage IIIB
T3N1M0
surgery 10/08/2015
8 round CAPEOX ( 09/2015-04/2016)
NED since 2016

claudine
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Re: Within the Family

Postby claudine » Tue Feb 15, 2022 11:50 am

This is such a good idea. I am "the family" so cannot truly comment on how my husband (the one dealing with all this crap) perceives me/my role since his ordeal started, but I can only hope that I am a source of comfort, of support. One thing he's shared with me is how difficult it is for him to be honest with his feelings, sometimes. He gets depressed/upset but feels like he's not allowed to show it, because he doesn't want to make others miserable too. He also feels that sometimes he's the one who needs to be supportive to relatives (not me, in this case, but his aging parents), which is very challenging.

Some years ago I remember watching a movie (I forget the name?) in which a young woman gets diagnosed with CRC. In one scene she goes clothes shopping with her mom, and gets upset because her mom feels that she (the patient) should be having fun - she screams something like "MOM! I HAVE CANCER! I CAN'T ENJOY MYSELF AS IF EVERYTHING WAS NORMAL!". I often think of this scene when I see my husband slipping into a "darker" phase, and try to give him room to be himself, to express his feelings even if negative. But it's hard...

Good luck with your project!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
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Kick'nAssCancer'sAss
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Re: Within the Family

Postby Kick'nAssCancer'sAss » Tue Feb 15, 2022 8:46 pm

Alex
When I went through my journey, I found that cancer makes people very uncomfortable. Everyone tries to be supportive and say the right things, but cancer is always the elephant in the room. Although I didn't need a big support group I couldn't imagine a person having to fight cancer on their own.

Good luck with your film.

Mike
Last edited by Kick'nAssCancer'sAss on Wed Feb 16, 2022 7:16 pm, edited 1 time in total.
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aleukhin
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Re: Within the Family

Postby aleukhin » Sat Feb 19, 2022 11:03 am

Dear friends,
Thanks for the replays and your stories!

For me, cancer or illness is like, it's like an uninvited guest, like an intruder that comes into the family. And in a sense has to be somehow incorporated into the family. And so, different families might include this or draw a boundary around it differently. Some families might invite in the illness, and the illness kind of runs wild and sort of consumes family life. In other families, the illness becomes a part of the family but gets sort of put on a shelf at times where it gets its own room, so to speak. So illness is kind of an uninvited guest in a way but the way that the family incorporates illness can vary by family.

Sometimes I felt with my family lonely like @prayingforccr, but at the same time, I have never been interested that my wife or kids felt about "my" cancer. After a few years of research, I found all families pass 5 stages of grief - and it can be in a different time. By interviewing different families, I was once again convinced of this.

Have you felt something like this - being in one stage and seeing your family in another one?

A.
m 35yo (now 42)
diagnosed 09/2015 rectosigmoid colon cancer Stage IIIB
T3N1M0
surgery 10/08/2015
8 round CAPEOX ( 09/2015-04/2016)
NED since 2016

utahgal7
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Re: Within the Family

Postby utahgal7 » Mon Feb 21, 2022 7:37 am

prayingforccr:

Have you tried meetup.com? It is a good source to find activities to meet people.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

aleukhin
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Re: Within the Family

Postby aleukhin » Wed Feb 23, 2022 11:34 am

prayingforccr wrote:[

I can't/don't want to make friends if I'm going to start to die in a short while :(
It's just the way it is.


Sorry about your situation. I have seen how few of my "cancer colleagues" died for the last few years. Life is int easy. My friend, said, "cancer will win if it takes a way your life; what you do, how you live." So my goal don't let the cancer do it.

Take a look a the short rough-cut interview I film for my documentary.

https://youtu.be/cqlBUbLkY7A

Alex
m 35yo (now 42)
diagnosed 09/2015 rectosigmoid colon cancer Stage IIIB
T3N1M0
surgery 10/08/2015
8 round CAPEOX ( 09/2015-04/2016)
NED since 2016

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Within the Family

Postby JJH » Thu Feb 24, 2022 6:24 am

aleukhin wrote:.... I want to hear your voice - what to think on this matter? Share your challenging relations with family and friends during treatment? How do your family/friends help you or, maybe, distracted?

I hope you will find this project somehow useful and I would appreciate any suggestions and comments.

Alex

Алекс,

Thank you for letting us know about your new documentary film. It looks very interesting, especially your focus on the Run.Pray.Love triplet as it applies to the family. The project look like a digital "triathlon" to be sure, and I'm looking forward to October when you release the final version !

I have one favor to ask, though. When you do release the final version, would it be possible for you to also post the transcript (in English) of the film's sound-track, like you did for the short trailer that you just posted? This is so that viewers can be sure that they fully understand the dialog of the sound-track when the sound is not too clear.

Thanks a lot ... and looking forward to October !
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

Rikimaroo
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Re: Within the Family

Postby Rikimaroo » Sun Feb 27, 2022 10:32 am

prayingforccr wrote:
aleukhin wrote:
prayingforccr wrote:[

I can't/don't want to make friends if I'm going to start to die in a short while :(
It's just the way it is.


Sorry about your situation. I have seen how few of my "cancer colleagues" died for the last few years. Life is int easy. My friend, said, "cancer will win if it takes a way your life; what you do, how you live." So my goal don't let the cancer do it.

Take a look a the short rough-cut interview I film for my documentary.

https://youtu.be/cqlBUbLkY7A

Alex


I have decided that I will end my life at a time of my choosing rather than die from cancer.

I think about it everyday.


Hang in there man, I know the feeling, I am sure you were crying while typing that..I been there am still there. I do have wife, 3 kids which is great support group, but still tough. I feel depressed daily, but don't show it all the time, I am strong confident and positive. I have a ileostomy bag, pain in my butt daily, stress, and I just continue to fight on. I am half the man I use to be and it hurts, I can't have sex with my wife because of erectile issues from all the surgeries, the feeling of not looking sexy (and I am a good looking man). The feeling have not knowing what to do, where to go, how to fix this is so difficult. Just hang in there.

Rikimaroo
RC T3N1M0 12/16
MSS - NRAS Mutation
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JJH
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Re: Within the Family

Postby JJH » Sun Feb 27, 2022 2:16 pm

Readers who are interested in Alex Leukhin's "WITHIN THE FAMILY" film project might also be interested in a 2018 film produced by his co-producer, Kayla Redig. Her hour-and-a-half 2018 film is a documentary entitled "VINCIBLE", focusing on young adult cancer patients.

Kayla Redig wrote:Remember when being young made you feel like you had the world by the tail and everything was new? Your first love and your first job? Remember how it felt to drive a car for the first time, or to stay up all night with your friends? You felt INVINCIBLE, right? How about the first time you had cancer in your 20s? What did that feel like? Let's ask one of the more than 70,000 young adults between the ages of 15 and 39 (the invincible years) who are diagnosed with cancer each year. Didn't know they existed? Now you do.

    VINCIBLE is a documentary that follows 27-year-old cancer survivor, Kayla Redig, as she creates a voice for the 69,999 other young people who lose their youth to this disease each year.

    Director, Redig, and her team of experts wonder, “What needs to happen to help young adult cancer patients face an older person's disease? In a system filled with specialty care like children's hospitals and nursing homes, where do the young adults fit in?

    Among the many issues covered in this film, Redig explores the need for a support community to assist young adults when they are diagnosed in the prime of their lives.

VINCIBLE (Documentary Film)
https://www.amazon.com/VINCIBLE-Kayla-R ... 07Y3Y55M8/

VINCIBLE trailer (over 7,000 views)
https://youtu.be/nrISFA8P6rY

VINCIBLE website
http://www.vinciblethedocumentary.com/

Kayla Redig's Blog
http://kkredred.blogspot.com/
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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saltygirl
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Re: Within the Family

Postby saltygirl » Sun Feb 27, 2022 2:37 pm

I know how you feel. I am in remission stage 4. Luckily I am able to travel constantly. And I do. I travel and I party hard. Luckily my daughter is in college. Son is almost going to college. Whatever time left I have I want to enjoy.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

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JJH
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Re: Within the Family

Postby JJH » Mon Feb 28, 2022 5:34 am

prayingforccr wrote:...I can’t/don’t want to make friends if I’m going start to die in a short while :(

prayingforccr -

If I read your signature correctly, you have been given three years or less to live. In the time you have left -- however long or short it might be -- you could reach out and make some virtual friends on the Internet. That's what member Marco did in 2014.

Image
Marco

Marco started with a small support group centered around his local family, but in a few weeks he had virtual friends from all around the world.

Muskokamike wrote:There were two members whose deaths I recall really hit me hard. Marco was a 30 year old guy from Milan Italy who posted under the handle ‘Nester’.

Marco fought his war for two years. When he realized he was in his final days he simply requested members from all over the world to send him postcards from where they lived. It was Marco’s way of visiting parts of the world he knew he would never live to see. The outpouring was amazing. Members sent postcards from everywhere, as far away as Australia. When Marco got them in the mail he would thank publicly in his posts the members who had sent them.

I regret now not sending Marco a postcard.

I remember openly crying reading Marco’s 'My Last Post’ thread. The last entry being made by his father, informing us all that Marco had passed and once again thanking everyone for the postcards and how much it had meant to his son.


I think this might be what Alex Leukhin had in mind when he started this thread and when he posted his short video: Whether we are cancer patients in remission or cancer patients on "chemo for life", we have a daily choice. We can either let cancer control our daily thoughts and activities, or we can take control of these ourselves. The choice is ours to make.
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

aleukhin
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Re: Within the Family

Postby aleukhin » Tue Mar 01, 2022 9:50 am

JJH wrote:Readers who are interested in Alex Leukhin's "WITHIN THE FAMILY" film project might also be interested in a 2018 film produced by his co-producer, Kayla Redig. Her hour-and-a-half 2018 film is a documentary entitled "VINCIBLE", focusing on young adult cancer patients.


Thank you for sharing! We are good friends with Kayla and she is going to be part of my film too )
By the way, I've been Vincible premiere at Chicago 2018!
m 35yo (now 42)
diagnosed 09/2015 rectosigmoid colon cancer Stage IIIB
T3N1M0
surgery 10/08/2015
8 round CAPEOX ( 09/2015-04/2016)
NED since 2016

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JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Within the Family

Postby JJH » Wed Mar 16, 2022 2:30 am

I notice that you have logged in regularly in the past week but you haven't posted any new messages. 

I hope that you are able to maintain communication with your family and friends, as well as with your film production team.

Take care, and keep safe !
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
●●●

aleukhin
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Re: Within the Family

Postby aleukhin » Wed Mar 16, 2022 9:29 am

JJH wrote:I notice that you have logged in regularly in the past week but you haven't posted any new messages. 
Take care, and keep safe!


Thank you! It's a hard time - both Ukraine and Russia! Being and Moscow I was helping my family and friends from Ukraine move to Poland and USA. It's a such big tragedy for all people. I feel last days like I was diagnosed with cancer again.
Postpone all project works for one month, hope will be able to continue again soon.


thank you for your support and pray
Alex
m 35yo (now 42)
diagnosed 09/2015 rectosigmoid colon cancer Stage IIIB
T3N1M0
surgery 10/08/2015
8 round CAPEOX ( 09/2015-04/2016)
NED since 2016

User avatar
JJH
Posts: 408
Joined: Mon Apr 24, 2017 7:26 am

Re: Within the Family

Postby JJH » Thu Mar 17, 2022 2:10 am

aleukhin wrote:
JJH wrote:I notice that you have logged in regularly in the past week but you haven't posted any new messages. 
Take care, and keep safe!


Thank you! It's a hard time - both Ukraine and Russia! Being and Moscow I was helping my family and friends from Ukraine move to Poland and USA. It's a such big tragedy for all people. I feel last days like I was diagnosed with cancer again.
Postpone all project works for one month, hope will be able to continue again soon.

Thank you for your support and pray
Alex

Yes, we will include you and your family in our daily prayers.

Reference: Psalm 91:11
"The darkest hour is just before the dawn" - Thomas Fuller (1650)
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