Thoughts to share after ringing the bell for those facing chemo

Kristen0630
Kristen0630 Member Posts: 15 Member

I am just two days away from one of the most emotional days of my life, ringing the bell for the end of chemo. My nurses and I cried, danced and might have even snuck in a hug or two. I am sure chemo is always scary. Being diagnosed and treated during a pandemic was surreal. I have a long way to go--I'm triple negative and still have surgery and radiation to face. But, I've found so much support on these boards and wanted to share what I've learned on my chemo journey. Maybe I can help someone the way others on this site have helped me.

- First and foremost, find a doctor and care team you can trust. Sadly, during the pandemic you will be on your own for many appointments. The trust and bond you build with your care team will be what gets you through chemo. Keep looking until you find a team you can believe in. My chemo nurse truly became a friend. The impact she had on my treatment and my life is huge.

- Before your first treatment, have someone walk you through what are the steps of your treatment. I found this helped me mentally prepare for all of my medical procedures. Not knowing is scary. Chemo is scary...take away some of the unknown by having a call with a chemo nurse who can give you an outline of your day. Believe me, it helps.

- Chemo is tough, but you are tougher.  Never forget that. One bit of advice my oncologist gave me was to not fall back on what you see in the movies. Hollywood makes this scarier than they should. Your doctor will get you through with the right meds to ease your symptoms.

- The mind/body connection is huge. Don't underestimate that ever and find ways to look at your chemo not as the problem, but as the solution. 


- You are going to be tired, and you're going to be emotional. I'm not a crier, but throughout all of this have become one. And sometimes even at sappy commercials. Allow yourself to feel this way. It's not a sign of weekness. You're going through a lot. Give yourself the space to feel your emotions. Take the time to rest. You're fighting a tough fight--but you can do this!

- Chose carefully when and with who you tell your diagnosis to. We are all different. I chose to keep my diagnosis very private, but was challenged several times on my decision. Don't let anyone push you into sharing what you don't want to share. It's your decision.

- Go for your wig selection early. Check your insurance to see if they will cover. Don't let anyone push you into spending more than you want. There are some unethical wig sellers that can prey on your emotions at this time. It's scary and easy to be manipulated into spending more than you need to. Decide early on where you are comfortable. And no matter what they say, I got a synthetic wig against much advice and got tons of compliments. You don't have to spend thousands to keep your hair loss private.

- walk every day...it's good for your body and for your mind. It's especially important on the days you don't want to.

I have gotten so much help and advice from these boards, I wanted to share something to give  back for those facing a new diagnosis and the first chemo. For us all, life will always be different after diagnosis. But we are strong, and we are warriors. Keep fighting the good battle, and never give up! Soon you will be dancing at your bell ringing ceremony, too. Sending you all strength and love!

 

Comments

  • Primavera
    Primavera Member Posts: 231 Member
    Thank you for this

    I had uterine cancer last year and only had brachytherapy after the hysterectomy. This year, just last month after my mammogram, I was diagnosed with breast cancer.

    I don't know much about staging or what I have. I just saw a surgeon who said that he has to do a mastectomy because the area is too "dispersed" for a lumpectomy. I think my 3.2cm tumor of poorly differentiated invasive ductal carcinoma is on top of some area of ductal carcinoma. And I have a lymph node that already tested positive for cancer too. Left breast only. Right breast is OK.

    So it's mastectomy with immediate reconstruction. Praying the tests for bone, liver, lungs, etc. are OK. Surgeon said he wants me to have chemo first. So I'm reading about it and getting ready for it. It's going to be harder in the middle of this pandemic. I see the oncologist on the 15th and have all the tests on the 16th.

    So thank you for this post. It gives me peace and encouragement.

  • Kristen0630
    Kristen0630 Member Posts: 15 Member
    edited September 2020 #3
    Primavera said:

    Thank you for this

    I had uterine cancer last year and only had brachytherapy after the hysterectomy. This year, just last month after my mammogram, I was diagnosed with breast cancer.

    I don't know much about staging or what I have. I just saw a surgeon who said that he has to do a mastectomy because the area is too "dispersed" for a lumpectomy. I think my 3.2cm tumor of poorly differentiated invasive ductal carcinoma is on top of some area of ductal carcinoma. And I have a lymph node that already tested positive for cancer too. Left breast only. Right breast is OK.

    So it's mastectomy with immediate reconstruction. Praying the tests for bone, liver, lungs, etc. are OK. Surgeon said he wants me to have chemo first. So I'm reading about it and getting ready for it. It's going to be harder in the middle of this pandemic. I see the oncologist on the 15th and have all the tests on the 16th.

    So thank you for this post. It gives me peace and encouragement.

    I am so sorry you are going

    I am so sorry you are going through this. You are in my thoughts and if you ever need a friend who is on a similar path, I am here for you.

    I was also so worried about going through chemo during the pandemic, as you can't bring a person to support you. But, I found the nurses and the medical staff are even more  caring. They don't want us to be alone and scared.  I made bonds and friendships with them that got me thorough. 

    I'll be sending so much positive energy, thoughts and prayers your way on the 15th. 

  • Kristen0630
    Kristen0630 Member Posts: 15 Member
    edited September 2020 #4
    Primavera said:

    Thank you for this

    I had uterine cancer last year and only had brachytherapy after the hysterectomy. This year, just last month after my mammogram, I was diagnosed with breast cancer.

    I don't know much about staging or what I have. I just saw a surgeon who said that he has to do a mastectomy because the area is too "dispersed" for a lumpectomy. I think my 3.2cm tumor of poorly differentiated invasive ductal carcinoma is on top of some area of ductal carcinoma. And I have a lymph node that already tested positive for cancer too. Left breast only. Right breast is OK.

    So it's mastectomy with immediate reconstruction. Praying the tests for bone, liver, lungs, etc. are OK. Surgeon said he wants me to have chemo first. So I'm reading about it and getting ready for it. It's going to be harder in the middle of this pandemic. I see the oncologist on the 15th and have all the tests on the 16th.

    So thank you for this post. It gives me peace and encouragement.

    I am so sorry you are going

    I am so sorry you are going through this. You are in my thoughts and if you ever need a friend who is on a similar path, I am here for you.

    I was also so worried about going through chemo during the pandemic, as you can't bring a person to support you. But, I found the nurses and the medical staff are even more  caring. They don't want us to be alone and scared.  I made bonds and friendships with them that got me thorough. 

    I'll be sending so much positive energy, thoughts and prayers your way on the 15th. 

  • Primavera
    Primavera Member Posts: 231 Member

    I am so sorry you are going

    I am so sorry you are going through this. You are in my thoughts and if you ever need a friend who is on a similar path, I am here for you.

    I was also so worried about going through chemo during the pandemic, as you can't bring a person to support you. But, I found the nurses and the medical staff are even more  caring. They don't want us to be alone and scared.  I made bonds and friendships with them that got me thorough. 

    I'll be sending so much positive energy, thoughts and prayers your way on the 15th. 

    Thank you

    I guess I'll find out treatment on the 15th and then I'll be scared on the 16th again because of tests. But at least I'll have a path.

    I had lung scans done in July (with 2 nodules and an area of ground glass opacity) because of the uterine cancer, but the other ones, especially the bones scan, are going to be new. I had some liver tiny 3mm spot long ago but nobody was following it. I hope nothing else has grown.

    I've been trying to find out alternatives to ice my hands and feet to prevent neuropathy, so that has kept me busy the last few days.