This website uses cookies. By clicking Accept, you consent to the use of cookies. Click Here to learn more about how we use cookies.
- home
- Forums
- Information and support
-
Blogs
Share your story in our online journal space.
- Online Support Groups
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
- Cancer Connections
- :
- About Seilien
Seilien
Occasional Contributor
10
Posts
6
Hearts
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
since
May 2020
June 2020
Turn on suggestions
Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type.
Showing results for
June 2020
I'm still recovering. I haven't had too much side effects. Some people get headaches but also I heard people can feel it anywhere from weeks to months to years later! One thing I am feeling is tenderness where the pins went in. It has been 2 weeks so the scabs are gone but it does feel like a bad bruise. Also I am numb on the area that was treated but no one is concerned about it. My cognitive abilities are also the same as before which is great. Apparently there are people who have done this treatment multiple times and in some places, there is a limit to how many times you can do it.
... View more
June 2020
To be honest, this happened years ago and I wish I couldve said something then because I feel very similarly. It's been 5 weeks since brain tumor surgery and I still feel wrong. I'm told that it is natural to feel anxiety and sadness with everything going on and I have resented everyone telling me this. My thoughts are all over the place. It makes me feel better to talk to someone but it's true, not everyone really gets it. I dont feel like burdening most people with these feelings either. I do hope you found solace somewhere or improved over time. Theres so little information out there even with internet and I also think the internet doesnt help so much too. There is some comfort knowing some people may have also experienced what I am feeling?
... View more
May 2020
I have a really good support system. Covid makes it hard though. Lately, the anxiety is eating me, I feel no one understands me and I just vent at my husband. Logically, I'm grateful to everyone but there's this side of me that is negative, isolated and just trying to get through the day. I got more treatment today so I'm feeling good that another thing is done but again, taking it a day at a time. Im tired and overwhelmed.
... View more
May 2020
2 Kudos
When i was looking into this, there felt a lack of actual experiences so I want to detail mine. First, I had brain surgery weeks ago. I became a candidate for gamma knife which is more targeted than whole brain radiation so I agreed to do it. This experience was scary (awake and aware whole time). The calming meds did not help enough for me. In the beginning, a frame is placed on you and I found that terrifying. A woman next to me got hers first and she was so tense and wanted to cry. It took about 5 min to put on but there wasnt any pain. But i was disturbed by the sound/pressure made when they screwed a little into my head (2 in front, 2 in back). The worst was the pain in my ear because part of the frame is put into your ears to help orient it. Tell the dr and he will do what he can but I did not expect that. Afterwards, the frame doesnt bother at all. Looking at it made me feel like Frankensteins monster but I didnt notice it until I tried to eat or when they took it off. The frame can make the gamma knife uncomfortable. I was in 2 positions that put a weird angle on my neck. The music was relaxing so I did fall asleep a couple times. Actual radiation took about 70 min (20 min for the other woman). There was no feeling from the radiation. I blame the frame for making it a difficult time for me! But I didnt actually feel much headaches or nausea. I was given meds afterwards but I was feeling only mild discomfort even at the end of treatment. The frame came off quickly and I felt some pricking discomfort at the pin sites. It's difficult to rest my head with the pin sites. I do hope this experience was worth it and I dont want to do it again if possible. It is done pretty regularly near me so I assume it is a good procedure? I am constantly amazed at the human ability to get through anything.
... View more
May 2020
1 Kudo
I started with breast cancer. I had a thyroid cancer scare (btw needles to the throat is terrifying) and now I have brain tumors. I can totally understand the anxiety and dark feelings associated with so much and having many drs (I get the impression that none of my drs want to take charge of my case cuz no one calls and I escaped the hospital after surgery because I didnt have a dr in charge of me). I dont know what my medical plan is anymore. I take it literally a day at a time. I had surgery, what now? Take my meds, live another day, show up to another appointment. I'm still coping and honestly I think that's what you're doing to the best of your abilities. You are right, this is scary and makes you feel alone. It's terrible and I sympathize. I'm sorry that I am not upbeat and optimistic but really, it's a hard time, let's just admit it.
... View more
May 2020
I'm not feeling myself after surgery. A little emotionless, catatonic. Is this part of surgery recovery? I feel no motivation, no pleasure from thing that used to make me happy. Will I return to who I once was? Anyone else having anxiety,trouble sleeping, feel different?
... View more
May 2020
how did you do so much? I couldn't stop crying or prevent the hopeless feeling . I just finished surgery and the terrible anxiety is eating at me. How do you have the energy?
... View more
May 2020
I have her2+ and estrogen receptor positive. I don't know too much about my condition (I feel like the drs don't want to give me too much info, they have been evasive). Everyone is coping in their own way. I have had people yell at me to stay positive and hopeful. Are you getting that? Does it infuriate you? During this covid crisis, I'm scared to be alone at the hospital. A couple more days until surgery, fingers crossed
... View more
May 2020
1 Kudo
Hi, I have been coping with advanced breast cancer (diagnosed at 26, daughter was 6 months old). I have gone through many scares over the years and I think I have reached the end almost (diagnosed with metastatic brain tumors). I was so so happy to have this short time with my husband and daughter. It is so hard. I want to live for them. I find I feel better to know there are others like me (I know that's sad). Everyday I lay in bed, not sure what to do now. I say keep trying your best. We live for the living. But I also understand it's a huge strain on those who have cancer too. I want to be optimistic for you and for me. We can only go a day at a time.
... View more
May 2020
2 Kudos
I am beyond upset. I was diagnosed with aggressive breast cancer in 2018. My daughter was only 6 months old as I received treatments and surgeries. I was just diagnosed with several brain tumors. I do not know what to do or feel. The grief is immense. Has anyone else who is under 30 with a young child gotten through this? Is there anything i can do for my husband and 2 year old? The current plan is brain surgery then gamma knife radiation. I think i have accepted the inevitable but i worry for my family.
... View more
Latest Tags
No tags yet
More information
Join the community
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.
We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.
© Cancer Council NSW 2024 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011.
Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt Charity: Charitable Fundraising Authority No. 18521.