Hei hei Romee and all of you who might read this comment!
I have seen your new video and that you are cancer free and I feel so happy and really emotionally touched and I want to let you know that I can relate so well with what you have been describing. I have finished my chemo already last year in November but it also took a while (5 months) and several examinations till I got the phone call that I am cancer free.
I spent an Erasmus year abroad 2019/2020 till I got diagnosed. In my case the cancer was really aggressive and I got very sick very fast. When I had decided to go to a doctor I already had problems with shortness of breath and swollen lymph nodes. The doctor was thinking that I might have a form of lymphoma after just one day and some examinations and I decided together with my family that I should come back to Germany to my families place to do all the further examinations and the therapy. In Germany I have spent the first weeks in hospital and there have been weeks where I could not even stand up for an X ray examination. But my state of health did improve fast as soon as I could start chemo. Even if the therapy was quite aggressive as well.
I missed one semester in my studies because of the therapy. I did not have any friends in the city where I have been hospitalized and where my family lives. I did enjoy the time with my family a lot but it's such a different life to what I have been used to.
I decided to move back to the city where I used to life before I went abroad to continue my studies a view weeks before I got the phone call that I am cancer free. I did know that it was quite likely that I will be cancer free because the doctors were optimistic but I was very sceptical. I also never really said goodbye to the nurses at hospital because I did not have the trust yet that I won't go there again.
But then suddenly I was sitting in my shared flat in my old place knowing that I am cancer free and that normal life was waiting for me and it felt somehow unreal. I was very grateful but I also felt a lack of emotion. Even if I had some time before I went back studying to process everything I had experienced, I still was thinking about all my experiences with cancer every day. Also I got the news that I am cancer free around the time when you, Romee, figured out that your chemo didn't work again. Physically I was in a good health and my lessons at university went quite well. But mentally I felt emptiness and I could not stop thinking that it was sheer luck that the therapy did work in my case and everything could be totally different and I could be totally dead by now and so many people are experiencing exactly what I am afraid of. In a way I feel very connected with other people when I am thinking that we are all somehow lost in the world and our power to live our lifes as we want it to be is limited. But I spent so much time with trying to prepare myself for everything what could come that I needed lots of time to learn how to make plans for the future again and how to have dreams.
When I was younger I used to be very nervous about talking in front of a group. This has changed so much. in the beginning I didn't feel any kind of excitement. It was also quite helpful because when I had to for example conduct a choir or an orchestra (its part of my studies) I could concentrate on the music because I did not care about what other people might think of me. I also did not have any capacity in my mind to develop romantic feeling for anybody. So going on dates was also not really interesting for me for a long time.
Most of the time I was feeling okay. Not really good but also not really bad.
But even if I also was quite sure that I will never be the person again that I used to be, I have to say that a lot of my old me had come back in the last months and somehow I am very happy about that. I feel more excitement, I also feel more embarrassment and sometimes I am getting lost in daydreams.
I start to have the same struggles as my friends have. Being a bit lost in our mid-twenties seems to be a common thing. When I was sick I have not been thinking about those kind of things and sometimes I miss that.
I don't think about the cancer every day. I also don't feel afraid often. Just sometimes and I know that it will get even better when time goes by.
From time to time I feel the need to share my thoughts and feelings about being sick and recovering with people (or just write it down not knowing if anyone will read this one day :D). It does help me a lot with processing everything.
Once again I want to say thank you, Romee, for this safe space and thank you for your decision to share your story on YouTube. It was so impressing to watch you grow mentally. I love the fact that also after you have got diagnosed you have shown us that there is much more than just the disease in the life of a cancer patient. You are brilliant! :D
Hi Romee - I watched your latest video and you mentioned you were having problems with your feet. My mother had the same issue (neuropathy) and was introduced to a TENS device. There are specific acupressure points where the pad is placed and it is a daily routine and turn on the device. My mother went from barely walking to walking an 18 hole golf course. This therapy is called microcurrent therapy. Please research - at the time my mother was treated by MD Andersen in Houston Texas if you need any reference material. Let me know if you would like help with research, etc. God bless you. Regards, Mary
I just want to say I am praying for you and if you want any help with your medical condition you can try CBD (cannabis) herbal teas and oils. Please look here below for advise.
I found you Romee on YouTube literally yesterday and felt so refreshed and relaxed watching your videos. I feel they were inspirational, educational and just...Good! my only trick to get through things like hospital scans is to fall asleep in the MRI scan. Yes....maybe (definitely) I'm weird but it works for me! Or maybe I was just tired during those times haha
I *knock on wood* haven't been diagnosed with cancer but I do live with a chronic illness and have had a bening brain tumour come and go through the years. Mt tips are probably super stupid but here they go nonetheless:
For MRIs I like to pretend the sound is some weird futuristic techno music, it makes the hourse inside the machine (no contrast and contrast) go a bit faster. I also keep my eyes closed since mine requires a cage over my head.
Iced gel packs on your neck, forehead, etc when having a bad migrain help along with meds.
Drink a glass of water with one or two teaspoons of baking soda helps with reflux
I can't eat gluten and have since found my pain levels have dimished (gluten promotes inflamation so it makes my symptoms worse)
Sometimes I get sad over not being "normal" and I let myself feel that way for a little bit since the more you try to be upbeat 24/7 the more likely you'll explode one day. Just don't let the feelings consume you, let it out, cry if you can and then think of the things you're grateful for.
This is is probably silly but having a comfortable mattress and pillow for YOU make a whole difference. It will depend on what you prefer so sometimes the fanciest stuff will actually suck for you. When you're in pain or not feeling good having a comfy place to lay down has proved to be super important -rest is essential for any illness!
And last having a hobby like colouring, or embroidery or whatever you like to keep yourself occupied when your brain starts spiraling helps alot, same with music.
You've got this Romee! And same to the other people I've read are going through the sucky c.
This is a great idea. I was diagnosed with stage 3C ovarian cancer in May 2020 and underwent 4 chemo's, then a radical hysterectomy followed by 2 more chemo's. I am considered NED, No evidence of disease. It is incurable and has a high reoccurance rate at my stage. My chemo consisted of carboplatin and taxol. My main symptoms were extreme fatigue and neuropathy in my fingers and feet. I am now out of chemo for a little over a month and it has slowly been getting less bothersome, but it is still there.
I find that at the first sign that my neuropathy is going to begin, the best thing for me to do is to get up and walk and also drink water. My hair is beginning to grow back but I kind of fell in love with beanies. My three month checkup is the 24th of February and I am hoping to hear that I am still NED.
I am 46 years of age, never married, never had children. As soon as I was diagnosed I of course googled and youtubed. I came across a lot of video blogs in relations to cancer, like PeeWee Toms. SoFia, Emily Hayward etc. It is incredibly sad they all passed away but they are an example of having the most positive outlook you can even with the unknown lurking.
I live in Canada, and our treatment here is paid for by our medicare coverage. We are lucky that way. Here's to a much better 2021 to all of us.
I think this platform is a great idea and I am very curious what other people like to do to be able to cope with cancer. Thank you, Romee! I think you are cool.
Here are my tricks:
A nurse told me that ginger tea is the best when you have nausea and I really enjoyed ginger tea during chemo.
I am studying music and I tried to invent melodies to all of the scary things I find in my hospital room including the chemo infusions. Also it's an interesting challenge to try speaking the names of all the infusions and drugs fluently in a fast tempo.
I really like getting to know the hospital staff. I found some of their stories very inspiring.
Doing Origami to calm down works good for me. Now I have a lot of cranes...
A friend once told me she imagines giving a hug to all her friends when she feels sad. This is a nice trick if you can not hug anybody for some time.
Painting on my completely bald head was fun for me and I made some silly short films to entertain my family. When the hair starts growing again it's so soft that everybody wants to fondle your head.
I recommend good headphones in hospital to not hear the beeping sounds from everywhere... And sometimes I tried singing even if it doesn't sound wonderful.
I like to watch not only Youtube videos from people who have cancer but also from people who suffer a chronical disease for example cystic fibrosis because they are often more experienced in dealing with being sick and I feel that I can learn from them. I don't know if you know Claire Wineland. She is such an inspiring and great person but unfortunately not alive anymore but her videos are still online and they helped me so much.
You look beautiful bald! My mom did too, when she had to cut her hair off, so at least I know that if I get breast cancer I will look okay too! She told me it was neat to see moles and whatnot she didn't know she had since they'd been covered by hair her entire life. If I ever have to shave my head, I'll have a great scar to show off from getting kicked in the head by a horse last year and having a nice row of staples 😅
You're amazing, and so incredibly positive, and handling everything in stride. You've got people all over the world supporting you, and know I'm here if you ever need to talk or vent or whatever!
Darling, I've just finished watching your youtube video where you get bald and that video is so emotional. As a 19 years old girl I totally understand how scary losing your hair can be. Let me tell you that you have been so brave and strong, not only to do this big step so publicly, but also to share with us your "cancer healing journey". Despite everything you're going through, in your videos you always manage to deliver a positive message during one of the toughest moment of your life and THAT'S NOT AN EASY THING TO DO!
From one of your recent videos I know that real hair wigs are too expensive for you and you went shopping for a fake hair wig with your friend. I'm from Italy and I just wanted to let you know that here in Italy there are some association to whom you can donate hair and with that they make a real hair wig, and they donate to a cancer patient for free. I'm pretty sure that this kind of association exist where you live too, so if you feel more comfortable and confident wearing a real hair wig maybe you can try to inform on these associations.
Last summer I donated hair and I was able to donate a totally free wig to a 14 years old girl with leukemia, and that's probably one of the most beautiful things I've ever done in my whole life.
I am fine thanks. I have to wait till I get an appointment for my final PET-CT. Unfortuntaly in Germany the insurance pays for that examination just in individual cases and it takes some time to organize it. But on the other hand it's nice to not see the hospital for a view weeks.
@mara, so good to hear from you. I am doing well. I recently returned to work very part time and was worn out and sore after the first days but am slowly getting my stamina and strength back. I go for my first MRI on Feb 1st to check for tumor reoccurrence/growth.
Hello, it is awesome to get to know you through your website and your youtube. I am a 48 year old married mom of 2 boys-however I do not feel 48 years old. 48 years snuck up on me fast. I live in North Carolina, USA.
I was recently diagnosed with a rare low grade sarcoma called a desmoid tumor. It is a tumor that can be locally aggressive yet it does not mets to anywhere. The treatment includes surgery, chemo, radiation, wait and watch and/or high intensity ultrasound something.
Thus far I have had my 11cm tumor removed from my upper right thigh. I go back for MRI with contrast Feb 1st to see if the tumor has reoccurred. These MRI's will be routine for the reminder of my life because local reoccurrence is possible for the reminder of my life.
I am so excited to get to know others and thank you for your transparency and encouraging light in this world.
Hei hei Romee and all of you who might read this comment!
I have seen your new video and that you are cancer free and I feel so happy and really emotionally touched and I want to let you know that I can relate so well with what you have been describing. I have finished my chemo already last year in November but it also took a while (5 months) and several examinations till I got the phone call that I am cancer free.
I spent an Erasmus year abroad 2019/2020 till I got diagnosed. In my case the cancer was really aggressive and I got very sick very fast. When I had decided to go to a doctor I already had problems with shortness of breath and swollen lymph nodes. The doctor was thinking that I might have a form of lymphoma after just one day and some examinations and I decided together with my family that I should come back to Germany to my families place to do all the further examinations and the therapy. In Germany I have spent the first weeks in hospital and there have been weeks where I could not even stand up for an X ray examination. But my state of health did improve fast as soon as I could start chemo. Even if the therapy was quite aggressive as well.
I missed one semester in my studies because of the therapy. I did not have any friends in the city where I have been hospitalized and where my family lives. I did enjoy the time with my family a lot but it's such a different life to what I have been used to.
I decided to move back to the city where I used to life before I went abroad to continue my studies a view weeks before I got the phone call that I am cancer free. I did know that it was quite likely that I will be cancer free because the doctors were optimistic but I was very sceptical. I also never really said goodbye to the nurses at hospital because I did not have the trust yet that I won't go there again.
But then suddenly I was sitting in my shared flat in my old place knowing that I am cancer free and that normal life was waiting for me and it felt somehow unreal. I was very grateful but I also felt a lack of emotion. Even if I had some time before I went back studying to process everything I had experienced, I still was thinking about all my experiences with cancer every day. Also I got the news that I am cancer free around the time when you, Romee, figured out that your chemo didn't work again. Physically I was in a good health and my lessons at university went quite well. But mentally I felt emptiness and I could not stop thinking that it was sheer luck that the therapy did work in my case and everything could be totally different and I could be totally dead by now and so many people are experiencing exactly what I am afraid of. In a way I feel very connected with other people when I am thinking that we are all somehow lost in the world and our power to live our lifes as we want it to be is limited. But I spent so much time with trying to prepare myself for everything what could come that I needed lots of time to learn how to make plans for the future again and how to have dreams.
When I was younger I used to be very nervous about talking in front of a group. This has changed so much. in the beginning I didn't feel any kind of excitement. It was also quite helpful because when I had to for example conduct a choir or an orchestra (its part of my studies) I could concentrate on the music because I did not care about what other people might think of me. I also did not have any capacity in my mind to develop romantic feeling for anybody. So going on dates was also not really interesting for me for a long time.
Most of the time I was feeling okay. Not really good but also not really bad.
But even if I also was quite sure that I will never be the person again that I used to be, I have to say that a lot of my old me had come back in the last months and somehow I am very happy about that. I feel more excitement, I also feel more embarrassment and sometimes I am getting lost in daydreams.
I start to have the same struggles as my friends have. Being a bit lost in our mid-twenties seems to be a common thing. When I was sick I have not been thinking about those kind of things and sometimes I miss that.
I don't think about the cancer every day. I also don't feel afraid often. Just sometimes and I know that it will get even better when time goes by.
From time to time I feel the need to share my thoughts and feelings about being sick and recovering with people (or just write it down not knowing if anyone will read this one day :D). It does help me a lot with processing everything.
Once again I want to say thank you, Romee, for this safe space and thank you for your decision to share your story on YouTube. It was so impressing to watch you grow mentally. I love the fact that also after you have got diagnosed you have shown us that there is much more than just the disease in the life of a cancer patient. You are brilliant! :D
Hi Romee - I watched your latest video and you mentioned you were having problems with your feet. My mother had the same issue (neuropathy) and was introduced to a TENS device. There are specific acupressure points where the pad is placed and it is a daily routine and turn on the device. My mother went from barely walking to walking an 18 hole golf course. This therapy is called microcurrent therapy. Please research - at the time my mother was treated by MD Andersen in Houston Texas if you need any reference material. Let me know if you would like help with research, etc. God bless you. Regards, Mary
Hi Romee,
I just want to say I am praying for you and if you want any help with your medical condition you can try CBD (cannabis) herbal teas and oils. Please look here below for advise.
Building up the immune system
https://divinecruise.blogspot.com/search/label/Building%20Up%20the%20Immune%20System%20for%20the%20Winter
Here Additional blogs about the Dystopian World and Future we are going into
Dystopian World
https://divinecruise.blogspot.com/search/label/THE%20DYSTOPIAN%20WORLD
Dystopian World Part 2
https://divinecruise.blogspot.com/search/label/DYSTOPIAN%20WORLD%20PART%202
Have a good day.
Kind Regards
Divine Cruise
I found you Romee on YouTube literally yesterday and felt so refreshed and relaxed watching your videos. I feel they were inspirational, educational and just...Good! my only trick to get through things like hospital scans is to fall asleep in the MRI scan. Yes....maybe (definitely) I'm weird but it works for me! Or maybe I was just tired during those times haha
right? It's the only way I can endure a whole hour inside the machine!
I can totally relate with that "MRI sounds like techno" idea...
I *knock on wood* haven't been diagnosed with cancer but I do live with a chronic illness and have had a bening brain tumour come and go through the years. Mt tips are probably super stupid but here they go nonetheless:
For MRIs I like to pretend the sound is some weird futuristic techno music, it makes the hourse inside the machine (no contrast and contrast) go a bit faster. I also keep my eyes closed since mine requires a cage over my head.
Iced gel packs on your neck, forehead, etc when having a bad migrain help along with meds.
Drink a glass of water with one or two teaspoons of baking soda helps with reflux
I can't eat gluten and have since found my pain levels have dimished (gluten promotes inflamation so it makes my symptoms worse)
Sometimes I get sad over not being "normal" and I let myself feel that way for a little bit since the more you try to be upbeat 24/7 the more likely you'll explode one day. Just don't let the feelings consume you, let it out, cry if you can and then think of the things you're grateful for.
This is is probably silly but having a comfortable mattress and pillow for YOU make a whole difference. It will depend on what you prefer so sometimes the fanciest stuff will actually suck for you. When you're in pain or not feeling good having a comfy place to lay down has proved to be super important -rest is essential for any illness!
And last having a hobby like colouring, or embroidery or whatever you like to keep yourself occupied when your brain starts spiraling helps alot, same with music.
You've got this Romee! And same to the other people I've read are going through the sucky c.
I have fallen in love with watching Tia Bee Mele Stokes youtube channel who is a married mom of 5 who is documenting her journey with AML every day.
This is a great idea. I was diagnosed with stage 3C ovarian cancer in May 2020 and underwent 4 chemo's, then a radical hysterectomy followed by 2 more chemo's. I am considered NED, No evidence of disease. It is incurable and has a high reoccurance rate at my stage. My chemo consisted of carboplatin and taxol. My main symptoms were extreme fatigue and neuropathy in my fingers and feet. I am now out of chemo for a little over a month and it has slowly been getting less bothersome, but it is still there.
I find that at the first sign that my neuropathy is going to begin, the best thing for me to do is to get up and walk and also drink water. My hair is beginning to grow back but I kind of fell in love with beanies. My three month checkup is the 24th of February and I am hoping to hear that I am still NED.
I am 46 years of age, never married, never had children. As soon as I was diagnosed I of course googled and youtubed. I came across a lot of video blogs in relations to cancer, like PeeWee Toms. SoFia, Emily Hayward etc. It is incredibly sad they all passed away but they are an example of having the most positive outlook you can even with the unknown lurking.
I live in Canada, and our treatment here is paid for by our medicare coverage. We are lucky that way. Here's to a much better 2021 to all of us.
Hello everybody and happy new year!
I think this platform is a great idea and I am very curious what other people like to do to be able to cope with cancer. Thank you, Romee! I think you are cool.
Here are my tricks:
A nurse told me that ginger tea is the best when you have nausea and I really enjoyed ginger tea during chemo.
I am studying music and I tried to invent melodies to all of the scary things I find in my hospital room including the chemo infusions. Also it's an interesting challenge to try speaking the names of all the infusions and drugs fluently in a fast tempo.
I really like getting to know the hospital staff. I found some of their stories very inspiring.
Doing Origami to calm down works good for me. Now I have a lot of cranes...
A friend once told me she imagines giving a hug to all her friends when she feels sad. This is a nice trick if you can not hug anybody for some time.
Painting on my completely bald head was fun for me and I made some silly short films to entertain my family. When the hair starts growing again it's so soft that everybody wants to fondle your head.
I recommend good headphones in hospital to not hear the beeping sounds from everywhere... And sometimes I tried singing even if it doesn't sound wonderful.
I like to watch not only Youtube videos from people who have cancer but also from people who suffer a chronical disease for example cystic fibrosis because they are often more experienced in dealing with being sick and I feel that I can learn from them. I don't know if you know Claire Wineland. She is such an inspiring and great person but unfortunately not alive anymore but her videos are still online and they helped me so much.
You look beautiful bald! My mom did too, when she had to cut her hair off, so at least I know that if I get breast cancer I will look okay too! She told me it was neat to see moles and whatnot she didn't know she had since they'd been covered by hair her entire life. If I ever have to shave my head, I'll have a great scar to show off from getting kicked in the head by a horse last year and having a nice row of staples 😅
You're amazing, and so incredibly positive, and handling everything in stride. You've got people all over the world supporting you, and know I'm here if you ever need to talk or vent or whatever!
Darling, I've just finished watching your youtube video where you get bald and that video is so emotional. As a 19 years old girl I totally understand how scary losing your hair can be. Let me tell you that you have been so brave and strong, not only to do this big step so publicly, but also to share with us your "cancer healing journey". Despite everything you're going through, in your videos you always manage to deliver a positive message during one of the toughest moment of your life and THAT'S NOT AN EASY THING TO DO!
From one of your recent videos I know that real hair wigs are too expensive for you and you went shopping for a fake hair wig with your friend. I'm from Italy and I just wanted to let you know that here in Italy there are some association to whom you can donate hair and with that they make a real hair wig, and they donate to a cancer patient for free. I'm pretty sure that this kind of association exist where you live too, so if you feel more comfortable and confident wearing a real hair wig maybe you can try to inform on these associations.
Last summer I donated hair and I was able to donate a totally free wig to a 14 years old girl with leukemia, and that's probably one of the most beautiful things I've ever done in my whole life.
How is everyone doing this day?
Good to see a smile 😃
Hello, it is awesome to get to know you through your website and your youtube. I am a 48 year old married mom of 2 boys-however I do not feel 48 years old. 48 years snuck up on me fast. I live in North Carolina, USA.
I was recently diagnosed with a rare low grade sarcoma called a desmoid tumor. It is a tumor that can be locally aggressive yet it does not mets to anywhere. The treatment includes surgery, chemo, radiation, wait and watch and/or high intensity ultrasound something.
Thus far I have had my 11cm tumor removed from my upper right thigh. I go back for MRI with contrast Feb 1st to see if the tumor has reoccurred. These MRI's will be routine for the reminder of my life because local reoccurrence is possible for the reminder of my life.
I am so excited to get to know others and thank you for your transparency and encouraging light in this world.