May 2022
Hi Miracleseeker, I want to say that the disease does not define you; how you look does not define you. It is who you are, the inner you defines who you are. Do not think about the disease or think about how terrible the situation is, think about healing, think in solutions. Miracles come from faith, build that faith and let people around you see that faith and inner strength radiate from you. Mums are tough, especially mum of 4 boys! 🙂 I am sure some time later when you look back, you will think, this is nothing, I can do it! 🙂 God be with you! Be blessed, Do not be afraid.
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May 2022
Hi Sam, Good to hear from you! You really do not need to be sorry about your late reply as I totally understand the turmoil you are going through! The beginning of everything is hard, it is especially true for this journey which is so much rougher than the other ones. I think comparing myself to other people helped, people who have lost their lives to accidents, fire, flood etc. . I think about my classmates who were the same age as me but sadly have passed away many years ago. I am lucky to be still alive comparing to them. If you focus on what you have and focus on making every moment beautiful, you will feel the peace. On the contrary, if you focus on the negatives such as side effect of the surgery, it will make you scared. My husband asked me if I was scared before my surgery. I said not really. I said it is like people going to bungee jumping, they might be a little bit scared inside, but when it is the time to jump they just jump. Only with that jump, you achieve what you could not have imagined. You will feel relieved after the surgery, at least that is how I felt. Cancer is taken away, and you are given a new chance to start all over again. Isn't that great?! Yes, of course we have to live with some pain for some time, but the good news is that is only temporary! Soon after your recovery, you will be walking, driving, running as you used to. You will be there when your children celebrate their birthdays or graduate for the years to come... It will happen, just keep the faith! I am lucky enough that surgery was the only thing that I had to go through. I think the diagnosis is a wake-up call. It calls to change the ways I was living and change my diet and exercise more. Things will only get better from here. I am rediscovering the things that made me relax and happy, especially after your surgery, you will have a lot of time to do that. Pamper yourself, you deserve a break! Sending you positive vibes, Do not be afraid
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May 2022
1 Kudo
Hi Njia82, there are several tips I want to add: If you want to see a specialist/surgeon earlier but can not get an earlier appointment, you can get your GP to call them instead and that will make a huge difference! I wanted to see a dermatologist when we first suspected cancer and could only get appointments weeks down the track after trying with several dermatologist offices. One receptionist suggested my GP to call them instead and that secured me an appointment the Wednesday next week! The dermatologist could perform biopsies right away on the appointment and that also certainly bought me time. Yes, timing is essential as the early it is detected the less treatment you will need and the better your recovery is. When biopsy result comes back, check it right away and make appoint with a surgeon or medical oncologist right away! If you are really worried about spreading risks, maybe ask your GP/specialist to prescribe a whole body PET SCAN which can show where tumours are. If there are no uptake of radioactive sugar in other parts of your body, there should be no need to worry. My surgeon prescribed the test after seeing me the first time and it was bulk billed. Not sure if it is also bulk billed if your GP prescribes it but you can find out. Having the scan earlier can speed things up and give you answers and peace of mind as well. I think doctors sometimes do not talk much as they do not want to scare you. My surgeon did not talk about much about side effects of the surgery and told me it will only take 2-3 weeks to heal. It’s taking longer…but no big deal. Not talking much does not necessarily mean your condition is bad or they do not want to inform you. Experienced doctors know how to balance their talks to give you information at the same time not to scare you. When you are doing research online you may find a lot of things that might not apply to you but will scare you only. Yours is most likely stage 0 or 1 or 2, which means it has not spread to other parts of your body, you may only need surgery and do not need chemo or radiotherapy or even immunotherapy. So reading about the possibility of spreading or having these treatments and the horrible side effects that they might bring will only make you scared. When a person is scared, his body will produce adrenaline which prepares the body for fights and his immune system will be suppressed. This is the time we need our immune system the most, so make sure you do not worry and develop an positive attitude towards healing. Thinking about what things make you relax in the past, is it music, is it good food (make sure not sugary food as cancer cells love sugar), is it meditation, is it Taichi, is it exercises, is it talking with friends… Do all of those things that helped you in the past and discover new ways to make you relaxed and sleep well. For nutritious recipes , you can go to CANutrition.com.au or search for some dietitians' websites. Looking for these healthy living resources will keep your mind away from thinking about the negatives as well. There are several free telephone support lines such as Beyond Blue, Lifeline etc.. You can call to just talk with someone and get things off your mind when you need. If you want a more in-depth consult, your GP can give you mental care plan letter for free psychiatric services if he or she finds you eligible. With this letter, you get 20 free or discounted psychiatric services depending on which psychiatrist you go to. There are psychiatrists that specialize in cancer patients support but can be a bit pricy and a long waiting list, like Headwayhealth, Mindmyhealth. I am using Goodminds.com.au and they provide no-gap services with mental care plan letter. No need to worry about your finance. The government pays towards consultations, scans and treatments, though sometimes only a portion. I think my message to take away is -- actively focus on healthy living and do not think about the negatives. There is SO MUCH support and help out there, if you just open your eyes and heart to look for them. Send my best wishes to you, DO NOT BE ARAID!
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April 2022
1 Kudo
Hi Njia82, I totally understand what you are going through. I felt the same when I first heard my diagnosis 2 months ago. But I quickly leant how to gain the control of my life back and things are working well and now I am in a position to share my experience even. First of all, try to think positive. Especially according to your description, yours is early stage and low grade. If you take the right measures now it is not going to spread! There is surgery, there are new treatments like targeted drugs and immunotherapy that are highly successful. I have relatives who had surgery and chemo on breast cancer and is living and healthy for many years. If you find waiting is hard, you can ask your GP to refer your to several surgeons and see which one can see you quicker. I tried not to Google too much, only to understand the basics, because if you go on researching too much, you will find so many things that might scare you to death. When people are scared, their immune system will be weak or depressed and then their bodies will not have the ability to naturally kill the cancer cells. Normal people all have cancer cells, but usually their immune cells can kill them, only when stress or unhealthy lifestyle happens, some cells mutate and do not die as usual but uncontrollably grow instead. So now is the time you look at your diet, your mood, your lifestyle (if you are exercising and sleeping enough) and see how to make the change for the better rather than being scared which will only make things worse. I was also comparing myself to those people who lost their lives in accidents, bush fires or even the recent floods. We are so lucky already to be alive and there is still treatment and so much hope! Cherish what you have and live each day to the fullest, that's the best we should do! I also tried to live my life the normal way (but eating more healthy) rather than making dramatic changes, it made me feel there was not really a big life changer and made me peaceful. Above is my own experience, I hope it will help you. I also understand each person is different, so what works for me might not work for you, but I do hope my tips can at least help a bit. Best Wishes,
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April 2022
If you can not write numbers, maybe you can write them in words such as Zero Four...
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April 2022
Hi Samstock74, please do not be afraid. I am sure you will be ok and you HAVE TO BELIEVE you WILL be OK! Nothing does more wonders than a positive mind! If you be positive, you will draw positive energy from the universe and positive outcome will come! I just had my vulvectomy end of last month and it all went well. I felt I have a new life after the surgery! This is my second chance for life! I was telling my surgeon this is the NEW ME talking to you! The fact that you can have surgery to remove it means you are lucky enough to get it moved from your body, some people do not even have this option! I also heard a lot of stories about people "got rid off" their cancer with immunotherapy after surgery or chemo/radio. Look into that as if our immune system is strong, it can kill the remaining cancer cells. I wish you all the best, You can beat it!
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April 2022
1 Kudo
Hi Karen, so sorry to hear about your news. But please do not be afraid. I think there is still cure. I heard about a lot of cases who had 4th stages were cured by immunotherapy. Look into this option and it may save your life! Do not listen to or ask doctors about how long you can live for, they are not God, a lot of times their predictions are not right. I heard so many stories about people outlived their doctor's predictions. You are the owner of your life and how you live if will change how long you will live for. The most important thing right now is just stay positive and DO NOT think about the what bad things might happen or your family might lose you. We all die one day anyway, it's only a matter of time. Each day we are here, make it to the fullest, happiest, then you will suddenly find yourself living a normal happy life and so much longer!
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March 2022
I am 46. Just seen specialist on my biopsy result yesterday, it is melanoma with Breslow thickness 2.1mm and dermal mitotic rate 6 per/mm2. I was told it is quite deep and developing fast so will have a large area if not all of my vulva removed. Not sure what stage it is yet as specialist suspects some areas that are not sampled for biopsy which have dark pigmentation are melanoma as well but she wants to let surgeon to look at them. Still waiting for the surgeon to call me to make appointment, (not sure why I can not call them and when they are going to call, though the specialist told me she would send my file to the surgeon and ask them to speed things up). I was kind of prepared for this after doing my research online first, I thought I would not be so emotional but still felt so emotional when I was told and still now. My daughter is only 8, sticks to me all the time, I don't know how can she cope with life without me. I think I feel sad for my family and my sister that they might lose me... It's hard to understand why I cry, but I tried to hide my tears when I am with my daughter and pretend to be normal. My mum had lymphoma and now I have melanoma. A nurse at the specialist clinic told me her husband had lymphoma and her daughter has melanoma, so there is a pattern here. She was so kind, she hugged me and let me cried on her shoulders and gave a cup of tea. She told me her daughter had 3 surgeries and is doing fine now. I hope I can get through this as well. I am referred to Robyn Saw in North Shore Melanoma Institute. Any one who has seen her or have had similar condition like me? Though I know it is a very rare kind of cancer... Thanks for reading,
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