Young Survivors

jiselle16

Looking for any teal sisters who were diagnosed in their 20s, 30s or 40s? I was diagnosed at age 31, and I'm always looking to meet other young survivors. Perhaps this can be a space we can swap stories and share our struggles that are unique to us being young survivors. @ssajwani @Caitsmom @Sunflower @Erinosaurus

nadiaC

Hi @jiselle16 Thanks for starting this post. I’m
newly diagnosed at 42 with stage 3C High grade serus. I had surgery on June 10 and did my first chemo treatment on July 9. I’ve got a young boy who is 5 and I’d love to connect with you and other young survivors. 

jiselle16

Hi @nadiaC! I am so sorry you are going through this, but all of us here are rooting for you! So glad you found OVdialogue! I found the first chemo treatment so nerve-wracking as I didn't know what to expect. Hope you are doing as well as you can. I don't have any kids (unfortunately cancer took that option away) - but how is your little boy handling all this? As a Mom, that must be so tough at times.

nadiaC

Hi @jiselle16 Thank you for writing and for your support. This is a wonderful community of teal sisters. I’m sorry your first chemo was scary. Are you done with your treatments? My son is doing his best. We are lucky to have a family member here helping us, because he’s not at daycare. It’s difficult to recuperate with a high energy 5 yr old at home but he also motivates me a great deal. How are you doing these days? 

jiselle16

@nadiaC That's what we are here for - to support each other! I am doing well! I finished chemo treatments in December 2016 and I've been cancer free since then I can just imagine how difficult it would be to recuperate with a 5 year old, but so glad that he motivates you. 

nadiaC

@jiselle16 that’s great to hear! 💪🏼 😊 I’m on day 8 after my first chemo and overcome by waves of fatigue that cycle daily and hourly. I can’t tell if it’s a chemo side effect or menopause. Just riding the waves...🙃

jiselle16

@nadiaC Oh I remember those days! It definitely comes in waves. Sometimes I found it overwhelming, but I just kept telling myself to get through one hour and one day at a time. 

tdubs17

hi. 46 yrs old, diagnosed Feb 2020. Stage 4.  No surgery for me unfortunately.  First 6 treatments ended in June.  Because no surgery, not sure if going thru menopause or just still after affects of chemo.  no period 9 months, night sweats like crazy!!!   and yes, still tired, even tho my brain thinks I can run a marathon....nope/

nadiaC

Hi @tdubs17! Thanks for writing and sharing your experience. I had surgery in June and had loads of hot flashes for 2-3 months. Also low energy. Both have subsided now and it might be because of the anti anxiety medication I started over a month ago. 💪🏼

jhsurviver

Hi was diagnosed at 36,in 2016. With low grade serous carcinoma. Would love to talk with someone going throw similar stuff. I have 3children ahes10,15,&22. It is alot to deal with but we will all get through this together

Fearless_Moderator

@jhsurviver Welcome to our community.  And you're right, we're all in this together regardless of what type we have. This is a wonderful group full of lots of caring and sharing.  As for your interest,  I'm going to suggest two things to you to connect with other Low Grade Sisters. 

First of all start a new discussion topic with a title like:  Looking to connect with other Low Grade Sisters.  This is the best way to get some immediate attention.  

Secondly there have been other discussions on the topic. If you go to the Search bar at the top right of the screen and type in key words like Low Grade, former discussions will pop up.  They are always active and you can engage in those discussions at any time.  

A tip as you find other's with your type of disease. If you want to ensure they are flagged to any relevant comments to which they may want to engage, just type the @ immediately followed by the first few letters of their screen name and you'll get a popup from which you can choose the applicable member to communicate with.  

Finally, we have a live chat on Thursdays (today actually ) at 1pm EST.  Our group is growing although not sure if we have any Low Grade participants yet. But love to have you join us.  You need only sign in to Ovdialogue and click on the Discussion title : Teal Thursdays......and you're in.

Let us know how you make out connecting with others.  

jiselle16

@tdubs17 and @jhsurviver thanks for joining this discussion! What would you say is the biggest challenge you are facing right now? Dealing with menopause? Lack of emotional support from others? Anxiety? Or all of the above?? If you feel comfortable here sharing your biggest challenges at the moment, we can share some tips and strategies to help you cope. We can get through this together

jhsurviver

I actually don't find menopause to be that bad. Hot flashes are a bit of a pain but not to bad. I think lack of support is always questionable but I try not to focus on that to much and just enjoy my family. I think the hardest thing right now is wrapping my head around losing my hair again,just got used to having it back. And how to stay positive. Thank you I'm sure I will learn alot from everyone. 

tdubs17

Hi, last chemo was July 2020, I thought. I was going through menopause, but come Oct I had a period.  Now Nov and nothing again...so weird.  Was over 9 months then bam....yes hot flashes and night sweats.  Gaining weight and tired.  That could just be covid laziness...lol.   Biggest challenge is every time I feel something different I think of the worst...recurrence.....and well..

Jule_P

hi jislle16. 

Yes... i was diagnosed at 35 with stage 4. Here I am, now 44 years old. High grade serous. Have had three recurrences. Hard stuff. 

nadiaC

Hi @Jule_P. I’m 43 in January. Diagnosed HGS 3C in June of this year. I’ve just finished chemo and am now on a trial getting Niraparib. Just wanted to say hello and send you some positive energy.

jiselle16

Thinking of all the tough stuff @tdubs17 @jhsurviver @Jule_P @nadiaC are going through. I haven't had a reoccurrence (so thankful!) but it's still on my mind almost daily even 4 years post-diagnosis. I can still identify with the menopause symptoms, the weight gain, and the tiredness. I found writing a blog to be very therapeutic for me when I was going through treatment, as a way to let family members know how I was doing and also to let things out. Anything you all are doing to help you stay positive during this time?

jiselle16

I've had some discussions with Ovarian Cancer Canada about the possibility of starting monthly or bimonthly Zoom calls for young survivors. I have participated in similar types of groups with other young OVC survivors in the US, but it would be nice to have a Canadian version! It would likely be an unmoderated group. It would be a safe place to chat and share what is going on with you and how you are feeling with other survivors who get it! I don't have any specific details yet, but wondering if there is some interest in participating in these types of calls? @nadiaC @Jule_P @tdubs17 @jhsurviver - let me know if you are interested and if so, what time zone you are in!

nadiaC

Hi @jiselle16. Thank you for considering this. I’m interested! 

Fearless_Moderator

@cassiemastro I thought you might be interested in the Zoom group that Jiselle16 is trying to form.  See her post above. 

Jule_P

Hi @jiselle16 and the other young survivors! I hope you don’t mind—I’m not one for ongoing support groups. The commitment is hard for me when I have a lot of friends and family to still try to be close to. I can share some learnings, though.

I have found working with a trained psychologist to be the most helpful when I have needed someone to talk to or to get advice about how to continue sharing healthy attachments with others, especially when I haven’t been sure how to connect over my illness. There are many trained in working with people facing critical illness. I like the techniques that don’t dwell on what went wrong with the past but rather stay with the happenings of the present and how to be more comfortable there.

It takes a lot of hard work coming to terms with an advanced cancer diagnosis for someone just getting started in life, someone just embarking on their dreams and seeing their accomplishments begin to come to fruition. There is a lot of struggle with identity, letting go of old dreams and making space for new ones, and finding new self-care practices and strategies to face the much more intense stressors you will have as someone living with cancer. 

Try not to be defined by your cancer. Yes, it changes just about everything. But it opens up a lot of new opportunities, too. I have learned to be a gentler, more patient and compassionate person. I have reconciled relationships and learned how to better accept myself. I have learned what makes life meaningful for me and how to not be driven just by what I want. I stopped making goals until I could accept not having them, and then I started to dream again and set new goals—tentatively at first. Eventually, I learned how to live with uncertainty every day, how not to insist on getting my way, how not to strive for a competitive edge or perfection. I simply could not be what society thought a 30-something who ‘appeared’ well should be. 

Try also to not let others commodify your illness (or your health, for that matter!). That is, resist the temptation to draw fame from what you’re going through or to define yourself by making your illness mean something. Find meaning in what brings joy and love and light into your day.

If you can learn to abide in the present moment, you can live an eternity regardless of the cells in your body going a little wonky. Note: lookup yoga nidra with Richard Miller!

May you find inner peace and light in your journey.  JP

jiselle16

nadiaC said:

Hi @jiselle16. Thank you for considering this. I’m interested! 

Great to hear @nadiaC! Will send you a message.

jiselle16

@Jule_P Absolutely ok! Thank you for sharing your learnings and wisdom, such great advice. 

jiselle16

Hi ladies! @ssajwani @Caitsmom @Sunflower @Erinosaurus @nadiaC @tdubs17 @jhsurviver @Jule_P

In case any of you young survivors are interested, OCC is holding "teal teas" every month. It's a chance to connect virtually through Zoom with other teal sisters. The next teal teas are being held on July 27, 28 and 29. The session on Wed. July 28 @ 6pm ET (3pm PT/7pm AT) is specially dedicated for young survivors. Register and join me - I'd love to see your beautiful faces!

For more info on the July 28 session and to register: https://ovariancanada.org/Events/Find-Local-Events/2021/July/Teal-Tea-July-28-2021

If you have any questions, feel free to message me!