Welcome to the June session starting at 7 pm tonight. We will answer all your questions then. See you then!
Hi Everyone and Welcome to Live Nights; my name is Hayley and I am trained counsellor who works here at OCA.
Tonight we'll be focusing on Emotional Wellbeing and Living with Ovarian Cancer so any questions or comments on coping, anxiety, relationships and what helps you are very welcome!
I'm looking forward to your questions and comments which you can type in the Leave a Comment text box below.
Hi Hayley, i am feeling better after today but feel sad and hoping i didnt upset anyone over me talking about my reoccurance.I try so hard every day to deal with this but iam just in that horrible state of mind and cant find anything to be happy about and feel so selfish for feeling like this too
Thank you so much Hayley for your introduction. I am posting a question sent in earlier: so what would you suggest would be a good thing to do if I am feeling fearful about a recurrence.
PS please remember to refresh your page to see comments
How does one cope with ovarian cancer that has returned, especially when told it is not curable and life expectancy is around 2 years?
Hi Hayley - i have stage 3C cancer. I Had a hysterectomy debulking last November followed by chemo. I have BRKA 1. I am now taking Lynparza tablets for the next 2 years. These current make me fatigued especially in the afternoon. What are your thoughts on continuing to work 10 to 15 hours per week (office work)?
Thanks so much for your comment Tracy and for joining our tele-support group earlier today; it's a safe space to talk about anything you need and I know all the women who attended appreciated your input. It's very natural to experience many emotions when you're going through treatment including the more difficult ones like fear, sadness and worry for your family. Has anyone else out there experienced similar feelings?
Thanks for your comment Jules. Many women express the feeling that news of a recurrence feels devastating and even more difficult than their initial diagnosis. Sometimes in counselling I ask women the question; if you've been told you have a shortened life expectancy what is most important to you in the coming years?
Thank you so much for your question Pat and sharing your story. Unfortunately fatigue is so common after chemo and when undertaking maintenance therapy. I often ask women if they feel that returning to the office would be helpful (i.e will it give you a good routine, a sense of purpose, financial benefits) and if so it can be a great move. Do you have a good relationship with your manager where you could talk to them about what you could manage?
Ovarian Cancer Australia run several support groups. We have a support group in Brisbane, Sydney, Melbourne and Perth. For women who are unable to attend a face to face support group we have the Tele Support group which you can phone into or use Zoom to connect. Please contact the Helpline on 1300 660 334 Monday to Friday business hours should you wish to join any of our support groups.
Hi everyone; so great to see so many thoughtful comments. Please feel free to comment on each other's questions as well as you all hold so much wisdom and great advice for each other having walked the path yourselves...
I find the hardest thing too is dealing with family.My husband is with me all the way and a wonderful support and my oldest daughter is wonderful too but my other two children don't handle it at all and think iam cured after surgery and frontline treatment. They do except my recurrance but don't like to talk about it .i try to be positive around them but its hard when iam not well.
Fatigue is very difficult to manage there is a fine line between managing fatigue and making you more fatigued. The research into fatigue suggests a small amount of activity each day helps increased adrenaline and decrease fatigue. Obviously becareful not to overdo any activity as this can make fatigue worse. So just do a little walking each day and increase that as you can. If you have the flexibility to work the hours you can starting with a few hours per day and increasing them as you can. Obviously if you are feeling fatigued you then decrease and rest until the fatigue lessens. It is really important to listen to your body and do what you can when you can and rest when feeling tired.
Its only a small office - the boss, and 3 staff including me. Over the next 12 months (if I stay) it is likely that my hours could double and if I left midstream it would be hard for a new employee to pick up from where I left off. I am worried that I will let them down is I get a recurrence or land up in hospital (which has already happened) that I will let the team down. I love my job but I think it would not be fair on the others, so it may be better if I left now. My boss has been fantastic up to date. I am almost 65 and I could retire now but... I am not sure what is best for everyone
Pat, I’m currently working part-time 3 days a week. Last year I split my hours over 4 days not 3 so to help with fatigue. It helps to have an understanding and flexible workplace, the hardest part was starting the conversation with my manager.
Hi .I was told that too ,that i was terminal and have 2 years which is next month and it scared me so much and i still cant forget it.my other oncologist told me i had 40 percent chance of living 4 to 5 years and beyond .so i stick with that one. It does worry me that i have a recurrance and am having my second lot of chemo in less then 2 years but iam a fighter and i believe i will live longer and i will fight it all the way with all my strength.i just have to get over this mental challenge iam up against. regards Tracy
Thanks Pat; it's a difficult position and I can hear that you're anticipating what might happen in the future which is very hard to predict indeed. Sometimes our brains try hard to problem solve ahead of time which can cause a lot of anxiety! Do you think you could talk about these options with your boss? They may be happy to be flexible and take some level of risk for such a loyal employee. On the other hand, some women find that retirement is the best option for them if they are at the right age and have that possibility.
At OCA we have the services of a full time Senior Social Worker Angela as well as Hayley a counsellor working part time. You can access these services by reaching out to the Helpline on 1300 660 334 and they can make a referral for you. We also have the Teal Support Program which is a government funded program providing you your own specialist ovarian cancer nurse to help meet any of your unmet needs.
Thanks Sarah, great to hear what has worked for others and yes agree that the first conversation can be the biggest hurdle!
I hear you Tracy, we often say that a cancer diagnosis and its impact happens not just to you but to your whole family. Sometimes family members find recurrence and treatment so scary and confronting that it's hard to talk about; which can be tough for you if you feel you can only show the positive side. Has anyone else had similar experiences with family members?
Thanks Katherine for passing on this question. We know that many cancer patients no matter what stage they are diagnosed experience worry and anxiety about their cancer recurring. Of course some concern is normal and of course helpful as it can encourage you to follow up if you have concerning health symptoms; but not if your worry is repetitive and affecting your everyday life. Anyone who has experience this might find our Fear of Cancer Recurrence Booklet helpful; it has lots of info and tips on challenging unhelpful thoughts, being kind to yourself and recognising your triggers.
Just a reminder that this forum will finish at 8 pm. You will still be able to view the posts after the Live Nights is finished but you will not be able to post any further questions. So please post any further comments or questions you might have and we will continue to answer them.
I agree, the mental challenge is the toughest, but have to agree with you, stay strong in mind and hope the body follows.
Thanks so much to everyone for your comments; I just want to acknowledge that these are big topics we are discussing; if you'd like to talk further about any of the topics mentioned above I'd encourage you to contact the OCA psycho social team on 1300 660 334 during business hours or on email@example.com or speak to your Teal Support Program nurse. Also remember that you can use the OCA Connect forum any time to read about other women's experiences, ask questions and share your own story- Hayley
I want everyone to know too that i am not always this sad .I do have good days and i am grateful for every day i get even the bad days during chemo. I cant jump up and down and be happy that i have cancer and yeah iam having chemo on Friday and sadly thats how i am made to feel some times.I was so happy 2 years ago. we had a thriving business and i was having the best life.we had plans for our future and in july 2019 all that changed.I am so blessed to have wonderful family and friends and to have the support of ovarian cancer australia. iam just sad and not because i have depression, iam sad because i have cancer, I am sad because of what it has done to my beautiful family. I do believe that my life will get better as soon as i get through this second lot of chemo and in October iam going to have the biggest ...heres to life party. Regards Tracy