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Having a hard time with life in remission

Bex23
Posts: 7
Joined: Jan 2018

Hey guys, so little summary I am 25 was diagnosed about a year ago with a 12cm mass pushing on my heart. Went through R-EPOCH 21day cycle 6 days in patient and 14 out to recover. Lost all my hair, gained a lot of weight, had to move into my boyfriend's mom's house since I couldn't work or pay rent, had my car stolen, and lost a 14yr old dog to old age and a 1yr old pup to a hit and run all within the 6 months of the hell we all have been going through or gone through . Went into remission in December and I'm so grateful that I'm alive and healthy, lucky to have people that support and love me. But it's still hard. I found a new job where I live, but I had to move away from all my friends, people keep calling/mistaking me for a guy, my boyfriend's brother, or even in one instance his son, my hair is growing back and im grateful to have it, I really appreciate the little things people don't even realize they have like when eyelashes and brows come back you start feeling like things get better. But anyways sorry for rambling, I'm really frustrated with my hair, it's super curly and to short to put in a ponytail and to curly to style. I'm so tired of hats and bandanas, and I just want it back to the length it was. I don't have any friends down where I moved to and I feel so insecure about going out and meeting new friends because of my hair, my weight, and that I had cancer. I feel like that's all I'm gonna be known for when I meet people, as the girl that had cancer. We are all fighters and we are going to make it but it's still sucks and it's a marathon and I know I have to be patient and my hair will get there but I'm just so sad and tired of being called a guy. And having people say every time they see me that they love my hair and it growing so fast because i know it looks bad, its a blonde afro and it  just makes me feel worse about it even though they mean well. Any advice would be great. Just feel that even though I'm in remission I'm still stuck in the same life I had during cancer and I want to get back to being fun me not sad depressed me. Thanks for listening. 

Sten's picture
Sten
Posts: 162
Joined: Apr 2013

Hi Bex23,

You have my sympathy. I hope that things will get better for you.

Sten

Anaid2160
Posts: 10
Joined: Apr 2018

Bex23,

It has been a tough year for you. I started using hair and nail vitamins after my treatments. It seems to help. 

Sal0101's picture
Sal0101
Posts: 119
Joined: Sep 2015

Hi Bex,

You’ve had to deal with a lot that isn’t even connected to cancer!  Im not going to say it will get easier because I don’t know that for sure, but I do believe it will.

As far as the hair, mine came in very curly also. (Twice!) my normal hair is straight, not counting the grey hair that has a mind of its own! 

I had regular trims even when it was very short, especially the sides and back so the top could catch up. There are a lot of cute short hairstyles!   I also colored and highlighted it on a regular basis. I used a lot of product to smooth the curls a bit, although I have to admit it was nice having a bit of curl for once! (No hair dryer or curling iron needed)   I also made sure I put a bit of makeup on everyday, although I have to say that my 87yr old mom was better at doing her eyebrows than I was! 

The Curls are all gone now And I’m back to hair dryers and curling iron!  Stay strong! 

Sharon

 

 

CritterMamaLori's picture
CritterMamaLori
Posts: 48
Joined: Feb 2018

Hey Bex,

I so feel your pains of cancer remission. Hubby just found one of my old hairs, we measured it.... 36 inches! I can just barely pinch what I have now and hold on to it. I was known as "Lori with the long curly hair" for YEARS. My eyelashes and brows are finally back to a point where you can actually see them. Hubby and I moved far from our hometown and have no friends or family where we live now. I am now known as "Lori that had cancer". I get treated like I had the flu and now I'm all better. It's not that easy and I figure that all the people that haven't lived it have no clue about the treatment, the side effects or the recovery let alone the mental recovery. I try to keep living day to day and fortunately I have a husband that knocks me into reality and tells me I'm still recovering.... I have to be reminded that it may take a year or years. Even my long distance friends and family stopped the occasional "how ya doing" text or short call. There are no support groups in this area so I can't even make friends with people who understand. I drop in to the chatroom here when I have the time. At least the people there understand what we've been through. I have a feeling the mental part is going to be the hardest. Some days I have a good day and I don't feel so bad and no one will even mention my "issues". 

Here's my hand...we'll get through it all in time.... we are not alone. I just keep thinking that. I know it's hard to stay positive all the time but be grateful we are still alive. The others in chat tell me nothing will ever be "normal".... we have to create a new "normal". Just like moving away from where you know. I've actually told someone, "I ain't skeert....I had cancer and survived." Of course that was on a good day ;-)

Check out the chat room here. It can be very enlightening. You'll be surprised at the survivers and the fighters. You can PM me if you want to also. I work most days but always home in the evening. My job working at an ice cream parlor helps me stay in a good mood. You rarely meet a grumpy person eating ice cream! I'm old (55) but still think I'm young. 

So sorry about the pups and life issues. Those suck too.

Take care of you. We'll get there!

rachelmila
Posts: 2
Joined: Sep 2018

Hello, i was once in the same exact boat but am now 4 years in remission (diagnosed at 23), so i thought i could offer some insight :)

I struggled a lot with losing my (very long) hair, and i didnt stop wearing a wig until my hair was at least 2 inches long because of it. When i decided to stop wearing my wig, i went to a hair salon and i asked if they could help me style my "new" hair in a way that i felt comfortable. They made me feel so good and helped me spice up my look with some cute headbands and accessories. It gave me a lot of confidence.

I was also afraid people would think i looked like a boy. Because of that, i would watch youtube videos of makeup tutorials and play around with new looks for myself. It also gave me a lot of confidence, and it was really needed. I felt like embracing my feminine side really helped me throughout the process, and trying new hair styles and makeup styles isnt normally something i would do. Just the little things that help, this put a smile on my face, and i thought it was fun.

But lastly, and what i think is most important - somebody once said to me when i went back to work "does it upset you now that you'll always be 'the girl who had cancer?'" - and my immediate reaction was to get defensive, since at the time, i took it as an insult. I asked back "what do you mean?", and she said, "people will always remember you in that way, that you had cancer". I just looked at her and said, "no they wont" and i walked away. I was so mad, i went home and cried that night.

I kept thinking to myself that people would in fact think of me in that way, but telling people i had gone through treatment was actually something i was proud of. I liked telling people, and always felt a sense of pride when i did. Some people feel bad and go "aww im so sorry to hear that", but others say "wow, thats so amazing". And it is, its amazing. You have fought the fight and you are surviving. Wear that title proudly, because you have a lot to be proud of... and honestly, all the better if people think of you in that way.

Because you have gone through such a traumatic event at such a difficult age, you will always have an insight and wisdom on life that takes some people until their elder years to accomplish. Stay true to yourself and be proud of who you are and what you've gone through - you are darn strong because of it. Its okay to be sad, but try not to dwell on the things that may bring you down. The saddness will subside, and your excitement about life will only grow stronger, and become more important. Do things that make you happy, surround yourself with people that make you happy... and my favorite, shed the negative! (negative people, environments, anything that doesnt serve a positive purpose in your life). Smile

rachelmila
Posts: 2
Joined: Sep 2018

Forgot one thing - i agree with what CritterMamaLori said, where we have to create our own "normal". Some things are out of our control, and in time we get used to that. Acceptance is huge, and focusing on the things we CAN change is important. Not a day will go by where you wont think of your past with cancer, but like she said, you are not alone. There are so many of us with the same or similar story that want to help.

If you have any questions, concerns, or really just want to vent, you are welcome to send me a private message!

ShadyGuy's picture
ShadyGuy
Posts: 335
Joined: Jan 2017

Don’t surrender. Lead an active life. There are some on here who will tell you that suffering is a blessing and will lead to ”redemption” and a place in “heaven“ with a supernatural being. I don’t know about that. Maybe its true maybe its not. We all have to make our own decisions about that. Personally I see no value in suffering, especially when its not required. I do know you have here and now. We will all die eventually. I have noted that everyone wants to go to heaven but very, very few want to die to get there. The great tragedy is to not live while you have the opportunity. A friend of mine who died of lung cancer “rebelled” the last two years of her life. She took great comfort in refusing to wear a seatbelt and took long walks at night through unsafe areas. Though she was a millionaire several times over she went to Paris and slept on the streets with homeless people during a break in her treatments. She could easily have stayed at the Ritz. She was refusing to be intimidated by death. I don’t recommend that, in fact I strongly discourage that type of extreme behavior. Its the opposite extreme to cowering and surrender. Not a good thing. In fact its very bad. However it gave my friend a sense of control and enriched her life. What I am saying is avoid these extremes but don’t be paralyzed by risk aversion. Deal with any return of cancer when and if it happens. Don’t let it control your life now. Best wishes for an exciting and fulfilling life.

You are obviously a thinker. You will figure this out!

lindary's picture
lindary
Posts: 629
Joined: Mar 2015

My last chemo was Oct 2015. Since it had started growing back a little I shaved my head Feb 2016 in prep for SCT which was cancelled.  When it got about 2 inches long it was clear that it would still be straight and very fine. Now that is is 2 1.2 years later is is barely to my shoulder. It is thinner right in the front which bothered me for a while. But I also was dealing with building my strength back and defining a new normal so the hair became a low priority.

To me the hardest part of remission is getting use to the fatique. I do not have the energy that I used to have so I can't get things done as quick as I used to. Part of the new normal.

 

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