Its amazing how many times I have Heard this sentence from doctors and nurses and just people who have no idea how it feels to go through a life threatening desease.
So yesterday I had to go to the eye clinic as my eyes are playing up due to the steroids I have been on for almost a year, which has caused me to put on 20 killos and my face has become huge in size of what it was which they call it moon face due to steroids. I have been living in someone else's body for the past year, each time I look in the mirror(which is not often) I dont have any idea who the person is looking back at me,is something out of a horror movie 🙂 I can just go on and on, bloody steroids, hate them.
Any way as I was seeing the specialist for the eye he had read in the notes that I am on steroids and he asked me some questions and asked to see a picture of me before the steroids, this has happened many times with other doctors too who seem very interested in what steroids can do to you and how they can affect each person mentally and physically, as I showed him the picture he couldn't believe his eyes as I look very different, he asked me to email him the pictures and also took some photos of me with his camera, i got very emotional looking at the pictures and asked him if he thinks I will be back to how I looked after i stop the steroids as he told me he gives lectures on steroids and seemed to have alot of knowledge about them;
His reply was that he was not sure whether I would have my face aback, but it was defenately BETTER THAN BEING DEAD.
It's funny how when you have cancer no matter what happens to you and what you go through some people think that the fact that you are alive you should be thankful and not care,
if you have no hair, and losing your hair for the third time in nearly 2 years, if you put on so much weight in a short time that your body is aching, if your left hand is now shaking all the time and you are terrified it will be for ever, if you are chronic fatigue trying to recover from all of the drugs and you don't even look like yourself any more, if you find it hard to breath because you have had radiation to the chest which has made your lungs weak and you are now at risk of lung and breast cancer too and thats on your mind every day, if every morning that you open your eyes you feel like a truck has ran over you, if you have stretch marks all over your body because of steroids and they wil not go away, I can go on and on..... They might seem like small things for a cancer patient who is not dead, but for any other women who can sometimes be depressed over a small thing such as a bad hair cut let along all the other things external(feeling so fatique and sick every day) or external( not having hair or putting in weight) any of these are huge to deal with and very difficult.
It's sometimes so heart breaking and I feel so alone dealing with all this.
Sometimes I just want to say, I'm just a girl, how much can I put up with and for how long... I am no super woman. But I always end up getting over it somehow, I take a deep breath, put a smile on my face, and fight another day towards survival 🙂
WHAT I DO HAVE is a heart overflowing with love for my partner who I call my angel, my family and friends who love and support me, and the passion to live life to the fullest and to be able to help others who like me have been treated unfairly by life. My dream is to make at least one heart happy every day, the more happy hearts in this world the more happier I can be 🙂 so I'm focussing on what I do have and look forward to a life where I can LIVE, LOVE, DANCE, SING AND PRAY every day....
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thank you for sharing your story,
I am glad you are having a break, going through chemotherapy twice for 6 months I know how it feels to have some break in between.
You are doing so well.
All the best xx
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Wow I relate so much to your story, I can't believe how many similar experiences I have had, with doctors not knowing what's wrong for over a year, going to Ed and being sent back home confirming there is nothing wrong with me.
You are very young and you will be all ok, it is clear how strong and positive you are and that will get you through.
I was diagnosed with non hudgkinson lymphoma march last year at 32. And I have heard so many survivor stories of young ones with hudjkenson lymphoma. Lots o good news out there.
Thank you for sharing your story. I will be thinking of you and praying for you 🙂
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I pray that it wil all get better for you.
I can totally relate to you about how you feel with Dane's support. I also have had my partner by my side every step of the way, all the draining hours in emergency watching him sleep on the chair but not leaving my side,staying with me through all the chemotherapy watching me in so much pain, but not once complaining about anything. I see him as an angel sent from god to get me through the hardest time in my life. Our relationship has become so much stronger going through this together, we have been a team from the beginning and he is the reason i keep on fighting, and I know that our love will keep on getting stronger every day.
I feel so blessed to have his love and I tell him every day. You are so lucky to have such amazing man who loves you so much and is with you in this hard times. We are blessed.
Wishing you all the best with treatments and I pray it will be a better week for you next week 🙂
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Thank you so much for your lovely comment. I also pray that you will get through the chemo with flying colors and beat this which I am sure you will.
Staying positive is a must in these times and we have no other option but to be positive and believe in the power within us.
I am so glad to have found this site and already feel so much better to finally connect with other people who are going through similar experience as I have not done that this whole time I just did not have the chance.
I also been through Chemo twice, lost my hair twice, and experienced the whole thing you are experiencing. So if you have any questions just ask me, I feel I'm a big expert now after all the treatments, picc line and all many times lol :)
My thoughts are with you, please keep on updating us on your progress.
And smile no matter how hard it gets, because life will smile back at you too 🙂
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This iis my first time connecting to the cancer world since I was diagnosed with non hudjkenson lymphoma march last year. I really wanted to share my story here in hope to maybe help others who are going through the same thing and hopefully get some inspiration from all of you.
I have been getting treatments with hardly any break since I was diagnosed. It started with toumours spreading all over and chemotherapy to begin with. I had been sick for almost a year and very sick in bed for three months before I was diagnosed and my doctor did not think to send me for any tests although I had all the symptoms of this cancer, but that's another story, a very sad one.
After completing the first round of chemotherapy, I was told I had to do radiation to the chest as I had a large toumour which had not completely responded to chemotherapy and at 7cm in the chest it needed to be radiated and it meant a high risk in breast cancer and all other side affects, so I started radiation straight after chemotherapy was completed, 25 radiation session.
On the second last day of the radiation treatments I woke up feeling dizzy and out of balance so I mentioned this to my doctor and was sent for a head ct straight away. The next day feeling so exited to finish radiation, I was told I now have a toumour in the head. I had to undergo surgery to remove it as well as more chemotherapy but this time with stronger drugs.
The surgery was done a week later followed by chemotherapy which was the hardest thing to go through.
After chemotherapy was completed I was sent for another scan only to find out that the toumour had grown in size, not only it hadn't responded to chemotherapy and grew back after surgery but nwas even bigger, so all that treatments and no results.
I was now told that I needed to do a whole head radiation to get rid rid of the toumour and it meant losing my hair for the third time and a chance of it not coming back along with all other serious side affects.
It had to be another way, it just had to be, so I found the best surgeon in the country, desperate and terrified, I underwent another brain surgery, only to find out that the toumour came back three weeks after but was missed by the surgeon, so I was left for 2 months in pain while the toumour grew double the size, I became so sick and at this stage there wasn't much hope for me, but I wasn't going to give up.
One doctor decided to give me radiation and see if the toumour would stay away this time. So I started radiation to the head where the toumour was and not the whole head, after it was completed an MRI showed that the toumour had responded to the radiation, but now there was 3 other toumours in different area of the brain and also one on the eye muscle, which explained my double vision.
So I was told two weeks ago that I have no other option but to do a whole head radiation, I have completed 8 sessions and have another 7 to go.
I have not had a break since all this started, I feel so weak and every day is a struggle. I thank god to be alive, and the whole journey feels like a very bad nightmare, but I have to stay positive and believe that I will make it through this.
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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.