Now half way through 18 week chemo and loathing what it does to my body, bowel inflammation, hair loss, stomach cramping. All pervasive e haustion. Feel very out of control and not much continuity with oncologist so far due to holidays so nobody really has oversight of my case. I need to get that back on track but I also need to reach out to fellow sufferers to see if they too feel this powerlessness and confusion. Am on carboplatin and taxol.

Any advice on Sydney groups or how one van sit down with someone and have a decent conversation would be very much appreciated.

Thank you

I'm absolutely terrified my Mum has cancer. She is 62 years old.

Last week my Mum went to the ED with severe pain in her leg. They found that she had a massive blood clot and didn't know what could of caused it. She then had a CT scan which revealed a large 11cm mass on her right ovary that had spread to her belly button. They then took blood tests for tumour markers which all came back normal. The doctor said to us that they would of expected it to be very high in a malignant case but sometimes bloods can still come back normal.

She then had an ultrasound and the sonographer said that the mass was worrying but no fluid was present and the doctor said in most but not all cases fluid is usually present with malignancy. She also had an abnormal urine test but the doctor didn't discuss it.

Mum is now booked in for a biopsy tomorrow and won't know the results for two weeks. Apart from the DVT (which we have a strong family history of) Mum doesn't really have any symptoms at the moment.

Has anyone been in a similar situation?. Could it still be cancer?. I'm so terrified. I can't eat, sleep or even think right now. We have no family history of breast or ovarian cancer.

Your ovarian cancer nurse will be able to relay information to your medical team and gain guidance for you about the best way to support and treat you. 

To join the Teal Support Program or for further information, please contact an ovarian cancer nurse on 1300 660 334 or email care@ovariancancer.net.au.

Thank you

I am part of a team of cancer researchers and psychologists at Monash University (Melbourne, Australia) running free online mental health programs for those who have finished their primary cancer treatment (i.e., surgery, chemo, radiotherapy). Our programs focus on developing skills to cope more effectively with difficult emotions - which we know don't simply stop when treatment comes to an end!

We understand that it isn't always easy to reach out for mental health support (especially in the context of COVID-19), which is why our programs can be completed online and from your own home.

Our current 2-week online program ("Flexible Thinking") tackles thoughts around worry, rumination, and catastrophising. You can follow this link to take part: https://is.gd/cancope_flexible_thinking.

Our next 2-week program ("Doing Things Differently") will be running within the next month. 

Here is our Facebook page, where we post regular updates: https://www.facebook.com/cancope.page/

Please reach out if you have any questions about our programs! (e.g., over Email: psych.cancope@monash.edu or you can message me privately. If you live outside of Australia we can also call you on WhatsApp!) 

Thank you everyone :)

Conny

—

THE CANCOPE STUDY

Turner Institute for Brain and Mental Health | Monash University, Clayton, VIC

Ph: +61 404 353 956

I never suspected I would find myself on an Ovarian Cancer forum seeking support - but these are unique times we are in, after all.

Originally from Toowoomba, QLD, I have been living in the UK for the last 18 years. My 71 yo Dear Mum(DM) still lives back near Toowoomba and we tend to take turns visiting each other every couple of years. DM has grown to love travel and calls herself a "World Traveller"! On 7 Jan this year, I got the phone call I always dreaded getting living halfway round the world- it was DM to tell me she has been diagnosed with OC Stage 3. Symptoms??? The usual suspects - abdominal pain, some bleeds, ascetic bloating.

As a registered nurse in the army, I'm quite composed and professional and like to think I handle stressful situations well, but soon realised this all goes out the window when its a family member, especially your DM. I went into practical mode for her - contact the OCA and got fantastic advice and lots of resources to send to her in Toowoomba. The team on the end of the email when we got the first diagnosis

DM handled 10+ weeks of chemotherapy like a trooper, being much stronger and more positive than I ever gave her credit for (and that I probably came across as!). I suspect she's had a relatively easy chemotherapy journey than some of the stories we have read- no nausea or similar side effects. She has lost her hair but take it in her stride. I think she quite likes the lil' caps she now wears! She has smaller weekly doses rather than every 3 weeks.

This Monday (11 May 20) DM heads to Brisbane for surgery to have 'everything he can see with cancer on it' removed (her consultants words!). Unfortunately, we've just heard her post-chemo scan has picked up likely cancer on the liver, bladder, bowel and diaphragm :(. As always, she is keeping positive.... and that's a motivation for me to ensure I do as well. I can have my moment when the Skype turns off......!

COVID-19 has exacerbated a bad situation and made it worse as I would be in Australia supporting her as opposed to still being here in the UK. The solace is she is from a small country town with all the benefits that brings at times like this- a close knit supportive community who will rally around and the family back home.

Whilst DM is not completely techno-naive, the forums I suspect would confuse her. lol. So, any messages of support would be greatly welcomed. I will login and show her my screen over Skype. Whilst I, her friends and close family can be sympathetic, sometimes all you need is to hear from is someone who has been through things themselves and speaks with the authenticity I'm not able to do.

Many thank for taking the time to read this... I'm looking forward to my DM being a cancer survivor and coming on many more trips to UK to see me :)

Nurse81 (Patrick)

I am five years cancer free today!

I am so grateful to my medical team and the support of OCA. Here's to the next five.

Best wishes

Rachel

I was diagnosed with stage 4 ovarian cancer in October 2017 and had major surgery on 18 December 2017. I had the mass removed, lost a part of my bladder, small and large bowel and removal of my spleen. months chemo and 6 months targeted therapy.

A month or so after the completion of my chemo I had a PET scan showing I had spots on my liver and my CA125 was escalated. So I decided to have my first trip to Norfolk Island in April) May 2019 for 4 weeks. I spent another 2 weeks in Brisbane with my dad who passed quietly in hospital. On my return to Perth another PET scan was performed and low and behold NO spots and my tumour markers were excellent! In remission says my oncologist! F*#k how did that happen! He was as shocked as I was. So I'm back on NI ... reckon this place has improved my health, stress levels, diet etc.

Forgot to mention had a double mastectomy in 2013 .. on my 60th birthday !!

I'm over the moon ... But (always a BUT) still in the back of your mind and any health disruptions takes me back to being diagnosed. Not any easy road and really f#$ks with my head. I'm sure you can all relate.

But in the meantime I'm trying to be healthy, happy, relaxed on my little island in the South Pacific.

Please, everyone, take care and try and live in the moment.

Cheers Sharon

I am hoping that under this  thread Expressive Writing that you can post any poetry or expressions that you felt at the time of your diagnosis and afterwards. This will be a great chance for you to voice how you felt.

This is one I wrote when I was first diagnosed:

LET YOUR TEARS FALL

Don't let anyone ever tell you, do not cry

For they have never felt the pain and devastation of being diagnosed with a Cancer or disease that can take their life

Let Your Tears Fall

We all have triggers that bring the tears

The fears to the surface

We all fear what the future hold

Let Your Tears Fall

They give us the release we need

The solace we seek

Never be afraid to,

Let Your Tear Fall

I'm new to the board. Diagnosed Stage 3C High Grade Serous Epitheleal Ovarian/Peritoneal 5 months ago. Inoperable, Platinum resistant so now on Caelyx palliatively. I feel well at the moment but have had one bowel obstruction already.

I have lots of complications and issues that the doctors seem to have no clue how long I have to live. To be honest, I haven't asked him yet and I intend to on Wednesday but I'm not sure he really knows. The consensus seems to be that I might have two week, two months, two years, two decades, not a clue.

My question to you lovely ladies is this: how do you live and plan with the unknown? Do you plan for twenty years in optimism? Do you live each day like it could be your last? I find it difficult because if this really was my last day there is no way I would do the dishes. But if I have two years, well then the dishes probably need to get done. Does this make sense?

Naturally I would love some certainty (or maybe I wouldn't) but that isn't going to happen with most of us so I guess some hints on living with the uncertainty would be wonderful.

Thanks and keep on living life!

Robyn

Apart from feeling tired and  not motivated to do anything much chemo has been relatively kind to me except for weight gain ( others lose weight but not me) from the steroids I think!!

I am keen to find a drug trial. As I live in Darwin this will be an obstacle to overcome if I am successful.

If anyone has any ideas regarding  dealing with  a reluctant bone marrow or potential drug trials I would be most appreciative of your advice. Best wishes from Sunny Darwin

📞 Our Support Team is available on 1300 660 334 or support@ovariancancer.net.au

📖 For general resources, visit: https://ovariancancer.net.au/how-can-we-…/support-resources/

I am Anne and I recently had a surgery and will start chemotherapy this Thursday. I want to try to get support from you ladies who know what I am going through. It has been a tough 5 weeks for me after being diagnosed with ovarian cancer stage 1c. I try my best to see the light in this but sometimes I feel so sad and alone and mostly scared now that treatment will start. It is nice to hear inspirational stories from all of you and I pray that my treatment will be kind to me . Appreciate any helpful tips that I can do before I start this Thursday .

Thank you. 

So, good luck Nicole!

Ovarian Cancer Australia, Counterpart and Mercy Health are excited to announce a free “Living with cancer and wellbeing” day for women with, or following, a gynaecological cancer diagnosis. The event will be held on the 3rd of March at Mercy Hospital, Heidelberg VIC where you will have the opportunity to:

- Learn from psychologists about ways that may help improve how you feel

- Connect with other women who have experienced a gynaecological cancer

- Try wellbeing activities with experienced practitioners including yoga and art therapy.

To register, please follow the link: https://www.eventbrite.com.au/e/a-free-living-with-cancer-and-wellbeing-day-tickets-88598138417

Or call 1300 660 334

I'm Allan and my 26 year old daughter has been fighting Ovarian Cancer for three years. Sadly we are running out of hope as all treatments have been unsuccessful. She has started working with the palliative care team and this is very confronting.

I am not sure if there are many men in this group or fathers but thought I would explore what support I can get. My decision is made more difficult by the fact I am divorced from my daughters mother and they ( mother and maybe daughter) are making it clear they don't want me closely involved in this process. Even visits are discouraged. I have a strong support network but this situation is so so hard.

Thank you for reading

Yesterday she had her first appointment with an oncologist who visits Darwin Royal hospital every month. The treatment plan is for her to go to Brisbane where hopefully she will be able to have a hysterectomy in 3 weeks, there is another tumour showing in her remaining ovary and the doctor said they can’t stage the cancer until after this second operation. She is a public patient and will be going to the Mater hospital for the operation and follow up treatments.

The biggest concern for her at the moment is to find somewhere to live in Brisbane now/ asap and for the duration of treatment which could run into months.If there is anyone living in Brisbane with any ideas could you please let me know. I’m new to this forum and not sure if you can send private messages?

My daughter is happy for me to put out feelers on her behalf so at least I feel I can be of some help to her. She has no permanent address in Darwin and has been staying with friends and then in a unit for a month which she has to leave on Friday. She has done a lot of house sits through Aussie House sitters and has received some excellent reviews, she is single and into healthy eating and yoga. She is self-employed and runs her own small art and design business which has been put on semi-hold at present, so there is little income happening.

Needless to say all our lives have been turned upside down and due to being significantly disabled I am not able to hop on a plane and be with her and help which is a great sadness and frustration, my husband is my carer. We are all hopeful that the cancer may have been found early.

Thank you for reading, Rosemary

I’m 56 and I’ve just been diagnosed with ovarian cancer three days ago, but  I don’t know what stage it’s at just yet.

My doctor has sent off a referral to Brisbane and marked me as urgent. I just have to be patient now and wait for an appointment.

It came as a shock, but I guess that’s the same for everyone.

I’d been having digestion issues, constipation, needing to urinate more frequently, and that’s why I went to the doctor.  When she was examining me and pushed on my abdomen she felt something.

She ordered blood tests and sent me off for a CT scan  I didn’t even know we had a CT machine in our small town but I was lucky we did.

When I went back for my results she said I’m sorry but it’s ovarian cancer. I have what appears to be a 6.5cm growth on my ovary. Hoping it might be a cyst and not cancer I asked about the blood tests.

She had done one to look for cancer markers in the blood. Apparently normal would be about 30 U/ml and mine was 420 U/ml.

I have 1001 questions but for now the most important one is how and when  to tell my family.

I’m the sole carer for my grandson and it’s his 15th birthday on Saturday, then Easter, so definitely not until after that. But do I tell them before I get to see a specialist, or wait until after that? How do I break the news? I want to be as calm as possible when I tell them, so rehearsing something beforehand is probably best, but I don’t know what to say. Any advice would be wonderful, as I’m emotional and clueless right now.

I was so grateful someone let me know - she was instrumental in my early cancer life - I loved this lady like I had known her in person all of my life - her words were golden to me.

God Bless and Keep You Helen - your wings are soaring while I am selfish in my grief.

I want to re read her posts - where are they?

Much love,

Sandra - ovarian/peritoneum 10/13/2016

Dear Cancer,

I write to you in disbelief and a level of denial that my life has crossed paths with you. Like most people who have met you, your presence was never welcome nor enjoyed but the life-changing lessons you left behind were amazing. It is for this reason I want to say thank you for teaching me....

The true meaning of life;

That my children are my life's most rewarding blessing;

That my husband and I are true soulmates and how blessed we are to be together

That no matter what family is the biggest gift we are all given

That our achievements are own but the impact they have on others are our true legacy

How to immerse myself in each moment, giving it my full attention and care;

To be resilient in the toughest of times no matter how weak I feel

That I possess an inner strength ready to fight any challenge

Fear is a waste of precious energy and time and giving me new perspective and ability to not sweat the small stuff;<

To celebrate the smallest of wins and graciously take ownership for them because I deserve to;

To find pleasure in the simplest of beauties in life and to bask in the most glorious of them all

To re-connect with me and live my own truth

I am enough just as I am;

I have survived your ferocity and pray that others who meet you are as fortunate I In the meantime passing forward my lessons, I hope will show, that you have nothing on the human spirit and matter how hard you try that spirit will overcome you!  Sirin

Putting my learnings in words directed to that very challenge was a very empowering experience. Prior to writing this letter, I had trouble using the words 'I' and 'Cancer in the same sentence, now 10 months into remission I call my safe a Cancer Survivor and do so with great pride and gratefully. I invite your comments or even better your own letter to Cancer so that we can pay forward our learnings with others in similar circumstances.

You feel like your body has turned on you.  Suddenly you're going through menopause and have more in common with women twice your age.  When people find out what you have been through they are shocked and horrified because you are so young.  Prepare yourself for sympathetic looks and comments from strangers.

Even though you feel like you are going through a never ending hell, there are positives.  People will realise you are one of the toughest people they will ever meet.  Not much will upset you, life's small things take on a different perspective and you learn to make the most of life while you can.

Keep wearing bikinis, your scars are impressive.

If it makes you happy, do it.

If you want those shoes, buy them.

Nikki

1) If my cancer had not been found in what was thought to be a healthy ovary at such an early stage my outcome would not have been as positive.  I feel blessed to have had extended time with my family.

2) I no longer work due to fatigue from chemo etc but find I am busier than ever.  It might take me 3 times as long to do something but I feel great when I have managed a task.

3) Although there are some confronting discussions that have had to be had, I don't dwell on the future too much as I find worrying about the future robs me of pleasure in the present. Equally I am not stressing about things I cannot change from the past.

4) I am not perfect -far from it and every now and again I have a pyjama day but mostly I try to make sure that each day I have at least one thing that gives me a reason to I get out of bed, get dressed and face the world.  It is too easy to give into the negative path or thoughts can take us.  I also put news of cancer breakthoughs etc in prominent places to remind me that I just need to stay healthy and contain the tumours until the breakthrough in Ovarian Cancer gives me another positive option.

So that's a little about me, I hope I haven't waffled too much

But then I had the same pain 4 or 5 times after that. During this time I kept thinking it was something I'd eaten. Then my sister was getting married and I got busy. The last time it happened it was in the middle of the night and freaked out because this time I couldn't blame food allergies. I went to my regular GP who felt my stomach, sent me for urgent CT scan, blood test and ultrasound. Turns out I have a 12 cm complex cyst. I had surgery on 30 August 2018 to remove it. It's going to be 3 weeks on Thursday, 20 September 2018. I'm going to have my first chemo session on 21 September 2018. I'm a bit scared and I'm wondering how bad it'll be.

I'm 35 years old, no kids or partner. My mum and sister are my rock. I'd never had an operation in my life, and boom! The first operation I have is this one. Really sucks. But my doctors say they are looking to cure me. I'd be grateful to hear other people's experience with chemo. I'll be given 6 rounds of chemo, each session will be 3 weeks apart. The drugs I'll be given are called Paclitaxel and Carboplatin.