Words From Women
What I Would Say To Someone Else Going Through Low-Grade Serous Carcinoma
"Be honest and open about your body and what is happening. Nobody knows your body like you do so the Doctors are reliant on what you tell them. If you don’t feel heard, keep repeating yourself or seek a second opinion until no stone has been un-turned.
Read about what different treatment options are out there and to be your own advocate. Don’t be afraid to challenge Doctors and to tell them what you feel is right for you. If they disagree with you they will be able to explain and justify why this is. Any discussions and plans should always be with your fully informed consent.
With Low Grade you have time to weigh up options and not rush on in with sheer panic. This is a slower growing cancer and it is worth taking time to really get to grips with what the next steps should be. Above all, be kind and patient with yourself because coping with the news that you have this disease is very challenging."
"Be kind to yourself. Don’t hold yourself to your pre-cancer standards. You are coping with something harder than most people could ever imagine. It’s ok not to be perfect anymore."
"Seek out an oncologist who specializes in low grade ovarian cancer. Find a good therapist. People will tell you “you’re brave” and “keep up the good fight.” Sometimes it is hard listening to that nonsense. A therapist can help you work through all the complex emotions you’re going through. Support groups are also a great place to crowd source treatments and find support. Have courage, even when you don’t want to."
"Be gentle to yourself. Allow yourself to cry. To be angry, to say it’s unfair. Time has a way of eventually dulling the pain and allowing you to go on, even when you think you won’t be able to."
"If you find yourself with a diagnosis and join this “club” please reach out to support groups because it really does help to know that you aren’t alone. And BREATHE. Take each day one step at a time, sometimes one moment at a time.
You can do it!"
"Research and arm yourself with every bit of knowledge. Research your doctors, ask questions, and get second opinions. It’s your life, it’s not the time to be polite and accept answers that don’t make sense in your gut.
Most importantly, don’t let this hold you back! As long as I’m alive, I will live every day to the fullest. Some days I am not well and that looks like a TV binge watch, other days that looks like climbing a mountain I never thought I could climb. We are trying to see as many countries as we can while I’m still healthy.
I’m doing things I only dreamed of because I decided to let nothing hold me back. I push though pain. I push past the fear that is so strong some days it takes my breath away.
This disease is scary. But I refuse to let it define me or stop me.
Statistically, there is a day where it likely will but I hold on to every ounce of optimism that they will find something that will works!"
"Don’t put too much pressure on yourself. You didn’t cause this and you can’t be expected to fix it all on your own. You’re going to get lots of advice from well-meaning people about diet and lifestyle but you need to follow your intuition and listen to your body, you are unique and there is no one size fits all approach."
"Be brave, stand up for yourself! Ask questions, research all you can. Be diligent about anything in your body that doesn’t feel right. It’s a tough journey, but all you can do is hang in there and hope that a cure or at least better treatment becomes available. Good luck xxx"
"Live life to the full, no matter what you think might be your outcome, find enjoyment in the present. Bucket lists are powerful."
"The hardest lives are lived by the strongest souls."
"I often read other posts and would think how lucky I am to have options. But now I find myself on the other side with limited options and fading hope. The reality of our disease is that most of us will eventually get to the stage where existing treatments fail. Where we become so utterly vulnerable and reliant on research. Do what you can now to support researchers and help them find better answers. Maybe then they’ll have the solutions when you need them."
"Surround yourself with support including family and friends. Cancer can feel so lonely so reach out to others. I found joining a support group was hugely beneficial when everything around me felt so fragile. Ask questions to your medical team and find out information about your type of cancer. It helps to get out in the fresh air everyday and go for a walk – as much as you are able."
"It’s a hard road but we’re on it. Let’s travel it gracefully and enjoy the good days".
"You know your body, if something doesn’t feel right don’t put up with it, ask for a second, third even forth opinion. Don’t go on google when you can’t sleep at 2am!! If you are feeling overwhelmed you can ask your friends and family to help “research” online and filter what you see. Cure Our Ovarian Cancer is a good place to start."
"To know that the toughest of times lie ahead, that the pain, the fear, the sickness will be overwhelming at times, but to never stop holding onto hope. Hold on tight, because life is worth it. Be purposeful with your time. Prioritise what gives you meaning, what you enjoy and who you love most in this world."
"You will need to be strong, very strong and able to overcome the fear that will take over as soon as the word cancer is mentioned. Trust your doctors but also do not be afraid to ask questions."
"It is a surreal feeling and whole whirlwind of emotions to stare death in the face. To go from planning your future which seemed so far away, to literally looking at life in a completely different light. In the midst of this I think it’s important to try and identify the positives in your life, what you are grateful for, and concentrate on things that give your life meaning."
"Keep pushing for answers until you get the answers that you want. If you feel that you are not being heard and not being listened to it’s ok to ask for a second opinion, it’s ok to choose a doctor that is providing the care that you need."