Sharing my history

HI Everyone,

I have been asked as one of the volunteer online councilor's to start a discussion or share with you some of my journey.

I have avoided saying too much so far as my survival spans over 25+ years and I was worried I might bombard you or scare you with the amount of information and experiences I have had over the years.

I will write in stages so you all get a small amount of information each time.

On the 11th March 1996 I went to have a routine hysterotomy that would see me keep my ovaries.

Leading up to this operation I had spent 10 years going to Dr's and complaining of abdominal pain, really heavy periods, bloating, nausea, bowel problems, generally unwell. I also had an IUD throughout these years due to the pill being unsuitable.

I was met with many diagnosis and opinions all of which would turn out to wrong.

I was 34 when my diagnosis was finally made during the hysterotomy operation where they took everything including my ovaries. The left ovary was totally taken over by cancer and it had escaped from the ovary sending seedlings into the abdomen give access to other areas of the body. It was stage IIIC.

I was told I would need to have chemotherapy and I was given a 60% chance of remission and survival. I commenced chemo in the March and had the last one in the September. Due to the way I responded to the treatment my survival / remission rate was dropped back to 30% at the completion of treatment.

At the time anti-nausea was not available, you could only get over the counter medication and it wasn't very good. Thank goodness we have a range of options now.

Treatment was given every 3 weeks and took 8 hours to complete. I spent the first two weeks after treatment with my head in a bucket and the 3rd week I would start to feel better only to be hit with the next round.

During this time I remember being almost taken over with the fear of dying, not being able to beat this (and still happens 25 years later) Maintaining control over things in my life became extremely important to me. So much I had no control over.

I also found being informed and educated on my disease gave me more control and helped me to survive and fight this disease. I have found knowledge to be impowering and powerful. Doctors are doctors well educated people. They look after hundreds of patients every week. THEY ARE NOT GODS. THEY CANNOT PERFORM MIRICLES. While I can't control the disease I can control my reaction and have input into my treatments, and be proactive in the decisions that are made along the way.

If you are not participating in your treatment or are not wanting to be educated about your disease and treatment I strongly recommend that you get involved no one is going to have your back and best interests at heart more than you. This is YOUR LIFE you need to steer and control your journey.

When you attend appointments be sure to write down any questions or discussions prior to attending your appointment. I have found when I didn't write stuff down I would get to the appointment discuss so many other items I would forget about the things that were important to me once I arrived at the appointment and remember as soon as I left very frustrating.

Ulcers in my mouth and other areas were extremely painful and created problems with eating. I also remember the taste of food was compromised. There were some foods that I just stopped eating due to the taste being so disgusting.

Negative thoughts creep in when we are not well and feeling vulnerable and weak. I know we all try and stay positive but some days it's just really extra hard. On these days I would play the glad game. I would find the smallest thing to be grateful. It could be that I was able to get out of bed, or I was still breathing anything to remind myself to be grateful for small achievements.

People telling me to be positive drives me insane, and I find myself biting my tongue to not loose my temper while they think they are helping. If your fighting cancer you are positive you don't need someone who has no disease how you have to be. Fighting, surviving and having continual treatment over the past 25+ years would have to say I'm a very positive person. (I would think) but I still have people saying "you have to stay positive) YOU THINK!!!

This brings me to the next question that I always find loaded "how are you" I always want to answer do you really want to know or you just want the standard answer "I'm fine" If I said how I really felt would you still be listening by the end or will you have turned off before I finished telling you. It's a lot for most people to take on they don't know how to deal with you on an emotional level.

Throughout my 25+ years I have constantly used Marijuana and have always been transparent with my Doctors. This was well before any government changes to the way they deal with medicinal cannabis. It has been the best drug to use on a number of levels. It helped with the nausea, appetite, sleep, pain, anxiety and the list goes on. It should be on the PBS as it is very expensive to go through the legal chains but the street product isn't cheap either..

Throughout my posts I'm hoping to share my experiences over the past 25 years. Give you all some insight into the drugs I have used and the side affects. I have exhausted all the drugs available for Ovarian Cancer Treatment.

Friends and family that are not supportive should be avoided at all costs. This is a difficult journey at times and you really don't need the added stress from outsiders that mean well but cause stress and anxiety.

One more thing I want to bring up today before I sign off, your oncologist. If you are not happy with your oncologist or you are not comfortable taking to him/her don't stay with this Dr. Make sure you are being treated by a Doctor who makes you feel comfortable someone you can be frank and open with. This disease is not a friend it can invade you on every level it's so important your specialist can give you the answers you require. No matter how hard and unpleasant the answer is.

Well I hope I haven't scared anyone. If any of you have any questions please leave me a message and I will get back to over the next few days. I work fulltime so I'm not online everyday.

Take care everyone have a fantastic day and kick arse to CANCER and anyone who gets in your way. One of my mantras "if your not walking with me and supporting me get out of my way life is short and I don't have time for your crap"

Till we speak again....

Michelle

😘

adminchrishaywardLynnatCamelotKaren

Comments

  • What an amazing and inspirational story. Thank you for sharing you story Michelle it will be a fabulous emotional boost for other women being diagnosed with Ovarian cancer. Your message of hope and STAYING POSITIVE are very clear and inspirational.

    Thank you Michelle!

    Karen
  • Hi Michelle,

    Wow, what an amazing inspirational story of strength, courage, hope, determination, together with life's challenges and survival.

    Chris

    Karen
  • I don't know anyone else who has spoken from 25 years of experience. I met one woman who had been treated for more than 5 years and I was impressed, but she died six months later. Obviously your positivity, and looking for other oncologists, has helped a lot. I get told "not to give up". Well I haven't yet, but sometimes I am tempted. I was diagnosed 4 1/2 years ago and although I managed 9 months clear, it then recurred and I have been on 2 clinical trials, which worked at first, but then failed on me, so I have just about run out of options now.

    I look forward to your next missive.

    Lynn

    adminKarenHeather
  • Oh Lynn I hope you are able to gain some hope and inspiration from Michelle's story! Please reach out to the Helpline on 1300 660 334 Monday to Friday business hours should you require any further support. Kind regards OCA Support Team

  • edited August 9

    Hi Lynn,

    I'm not sure if this resonates, but the statistics around ovarian cancer suck!! They only take into consideration all the negatives and there is rarely any reference to any positive stories. So, I want to share a few that I know of...

    • I was diagnosed back in 2014. Following major surgery and 6 months of chemo, I was and still am cancer free!
    • I met a 85 year old lady a few years back, who had been diagnosed with ovarian cancer more than 50 years ago!! She was in hospital receiving treatment for a re-occurrence. What an achievement!
    • I have a friend who has had many re-occurrences over many, many, many years. She may never be cancer free, however she is on a maintenance regime that allows here to live a relatively normal life.

    I hope these more positive stories, help a little. 🙂

    Love and Light

    Karen

  • Thanks Karen.

    I am now taking daily oral chemo and slow release morphine. I don't think the oncologist expects me to last very long now, but so far I can go about my days duties ,although much more slowly and gently.

    Lynn

    chrishaywardKarenadmin
  • So sorry to hear Lynn. We are thinking of you. Please reach out if you need any support. You can ring the Helpline on 1300 660 334 Monday to Friday. Take care

  • Hi Lynn,

    Since the first time I was diagnosed I was never given a very positive outlook with this disease Over the 25+ years of living with this disease I have not been able to achieve remission. Hence the continued chemo treatments, operations and radiation. I have just been told by my oncologist that AVATIN has now been added to the PBS ask your Doctor if you could use this drug.

    Avastin works in the way that it starves the cancer of blood supply. "Avastin helps prevent blood vessels from reaching the tumor; this could starve the tumor."

    No matter what happens Lynn or what is said to you keep your smile, and have fun every day.

    It's so easy for everyone to tell you to be positive and give you advice on what they think you should do BUT this is YOUR journey. Do what ever makes you happy. Don't worry about anyone else or what they think or may or may not say. Your facing some tough stuff and If I was there I would give you a big hug. I understand and have empathy for your situation as I'm walking in the same shoes with a different/similar story if you known what I mean. Having Ovarian Cancer just fucken sucks and that's not mincing my words. As I share more of my story over the next couple of weeks / months you will get a clearer picture of my full story.

    Big hugs Lynn

    try and do something special for you as often as you can and tick something off your bucket list

    Michelle xx

    admin
  • Thanks Michelle. Yes, I've done Avastin (twice). It was free the first time, and that's when I got 9 months clear. But after the recurrence, which caused 2 tumours in my liver, neither clinical trials nor more Avastin (for thousands of dollars this time) have succeeded. I think the ca builds up a resistance to these drugs over time.

    I am now registered on the local Palliative Care team's list, and a therapist came yesterday to check whether our home needs any alterations to help if I get more frail. We will add grab rails and a variation to our shower and toilet. .. They will kindly lend practical equipment if needed.

    I am Ok and just went for a "lockdown walk" complete with mask. I have reduced my walking time from an hour to 20 mins. but it's good to push myself to go out and admire people's gardens and early daffodils. I have some minor projects to finish and am lucky to have supportive friends. I am also glad my husband has time-consuming hobbies. I am training him to cook!

    Regards

    Lynn

    adminHeatherSuzanne
  • Oh Lynn it is so important to enjoy the small things in life like the smell of roses and freshly opened flowers. Please take care and you know we are here if you need. We also have a Male Partners support group should your husband want any further support. Please ring the Helpline on 1300 660 334 should you require any information or support.

    Suzanne
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