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 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)

Diagnosed 12 March - First chemo 15 March

Feeling ok so far

Now that I have started my recovery journey I am ready to start finding out more

There must be so much to know

I’m starting chemo again tomorrow as it’s been 5 weeks since I had surgery. Hopefully I won’t have to many side effects this time round. My hair had started to grow back so I’m hoping it won’t fall out again, not much I can do about it if it does. But I have been using a shampoo to stop hair fall so who knows. I’ll try anything once or twice. Not looking forward to stating chemo but looking forward to seeing all the oncology nurses they do make the day much more pleasant. My ca 125 level has come down to 20 (when I was first diagnosed it was over 2000) so I’m hoping that will drop more. Doc was pleased with results because I have responded really well to everything so far. Anyway on a different note I would love to hear where everyone is from and how everyone is doing. I’ve noticed a lot of people haven’t posted anything for a long time and I’m curious as to how they are going. Maybe one day we can all meet up for a cuppa. Anyway I’ll let you all know how I go With chemo. Dionne

Second chemo yesterday: had a reaction which was scary, and they topped me with antihistamine. I slept a lot. Feel pretty good today, thanks to my rediscovery of prune juice!

I am wondering if anyone can give me an idea when I might start losing my hair. I want to go to a Look Good Feel Better workshop, but think it might have more value when this is happening. I have long white hair which has always been my identifier is you know what I mean. Its been this colour since my 30's.

What have others done?

looking forward to connecting with others.

My name is Lyn and I was diagnosed in Feb this year I guess we mostly have the same story with symptoms. I did go to my Urogynecologist for urine urgency I had had an earlier mesh repair done and had good results, but two years later just didn't feel right.  She checked everything out and said it was all good.  I wonder now if I should ring her so maybe she could do some other tests. I have completed surgery and chemo.  I thought surgery was bad, but chemo was worse.  Just getting my hair back and I love it, I didn't feel right with a wig and scarves were hard to tie.  I did go a little bogan and wore a lovely merino and possum beanie my sister bought for me in NZ. I am in Lorn NSW if anyone wants to call in for coffee.  Cheers :yn

At last my eyelashes grew back, but the hair seems very slow.  I always had baby fine hair.  It looks darker and is only about an inch long, so I still wear headwear as my ears seem to stick out. (Not used to seeing them!)  I used to have a jaw-length bob.  Such a pain trying to match headwear to my outfits.  But when I think about it I used to get it trimmed about every 8 weeks about an inch, so it will take months to look decent.  I had a 75th birthday recently and very short is not a good look on me!

Hope you are getting encouraging results from your treatment.