Have been reading lots of helpful posts on here so thought I’d bite the bullet and share something also. My mum (71) was diagnosed with stage 3b ovarian cancer just after Christmas last year, she had a successful hysterectomy surgery end of Jan and then started chemo mid March. She also has polycystic kidney disease which has lowered her kidney function considerably. Her oncologist initially advised against chemo as thought it may be too harsh on her kidneys, but along with her nephrology team, they figured out a plan for her and started her on carboplatin. She’s now half way through her 6 cycles and although she is now tolerating it well, she had a really tough start with two hospital admissions after her first cycle, and ended up having 8 weeks between cycle 1 and 2 instead of the 3 week gap plan. It was all very intense!
My sister and I have been with her every step of the way, rushing into a&e many times and I have been navigating all the medical jargon and reading studies, prompting doctors and at times really fighting for urgent care. I have a very demanding/stressful job so really found it hard to juggle both - recently it all go too much so had myself signed off work for a month and it’s definitely given some relief. I’m hoping mum has the worst of it out of the way now, but we’re all feeling a little worn out and low. I’m so grateful we’ve got each other but outside of our little bubble it really does feel lonely, like we are totally detached from the world around us.
I’m sure you can all relate? Would love to hear about anything that has helped in the way of coping with such a stressful time, especially with managing work.
Hope that’s not too long and thank you so much for reading x
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Fourbytwo93
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It sounds as if you’re doing a terrific job of supporting your Mum. However, you’re right in realising that you need to support yourself too.
Although my experience of having ovarian cancer was totally different to yours, I also experienced supporting parents over many years, whilst trying to balance a demanding job.
The thing I found most helpful was the ‘Headway’ app. It taught me a way to control my thoughts when my mind was running away with the ‘what ifs’. I believe ‘Calm’ is similar.
I concentrated on that process, with headphones on, every day. Sometimes twice a day. That was about 10 years ago and I still use the techniques that I learned each day. It really helped me. I found that, once I’d mastered the techniques, it took me out of my endless worrying. It also gave me an instant sense of control. I’m sure you’ve heard the idea:- ‘We can’t control the situation but we can control the way in which we react.’ It really helped me.
In your situation, I’d say, think what you’d say to your best friend in a similar situation:- Treat yourself kindly, arrange little indulgent treats, a break from the caring. Set aside a beautiful t of time for listening to music/reading…whatever you enjoy. But do try the app. I believe it can be tried free for a trial period, then you pay yearly. I’m not sure how much it is now but it wasn’t extortionate!
All the best to you and your sister. It’s hard to see someone you love going through a tough situation but it sounds as if your Mum us doing well and you’re all doing a great job. You have to look after yourself too.
Thank you so much for your suggestions, I will definitely give the apps a try, sounds like they could be really beneficial. Really appreciate your kind words also. Wish you all the best x
I hear you. I am 64 and was diagnosed stage IIIc last November and my worst fear is the interference to my grown kids' life. Wendy has given good advice below. You have to look after yourself to be able to look after others - and where that line is differs for everyone - find your own line. This disease can hang around for years and you don't want to completely burn out, or not have the reserves to deal with some other issue that might pop up in your life.
Good on you for taking care of your mum and realising you need some time out. The Cancer Council might have some resources and suggestions on additional support that might be available to your mum and support forums are great (when you can find time for them😀).
Your mum is lucky to have two caring daughters - be proud of the way you have shouldered the physical and emotional load so far - it isn't easy.
Thanks for your words of encouragement. Mum has often said she feels guilty for ‘putting us through this’ but we are always reminding her that it’s not her doing in any way shape or form! I will definitely take a look at the Cancer Council, hadn’t heard of them before so thanks for mentioning.
Wish you all the best and hope you are getting support too x
Hi Fourbytwo93 - I'm in a very similar position to you as the daughter of someone diagnosed end of February. Feel free to inbox me if you ever want to just chat as I totally understand this same overwhelm but have found it super comforting to chat to people who have had similar experiences with caring for parents/cancer etc. (I have a feeling we may be a similar age if the 93 in your user name is your birth year!!) xxx
Thank you for your post. I'm really sorry to hear you are feeling lonely. You've received kind and supportive replies from our members and I'm sure more will be along too. I just wanted to reply to let you know the Ovacome support team is here to listen, talk anything through with you or provide any information that would be helpful.
Please do get in touch with us, we’re here Monday-Friday 10am-5pm on 0800 008 7054. If we don’t answer immediately then please do leave a message and we will always call you back. We can also schedule a call with you at a convenient time or book in a videocall if you prefer.
You can also direct message us through this forum, or text/WhatsApp us on 07503 682 311. There is also instant chat through our website ovacome.org.uk We can look for local support if this would be useful for you.
We have an online friends and family group for anyone supporting someone with a diagnosis of ovarian cancer, which meets on the last Tuesday of the month, 11am - 1pm. You would be very welcome to come along and you can book a place through our website here: ovacome.org.uk/Event/family...
We also have a webinar on supporting someone with a diagnosis, which you can view here: ovacome.org.uk/emotional-im... Rafal who gave the talk is a coach but he also has personal experience as his mother was diagnosed with ovarian cancer.
I'm sorry your job is so stressful and you may find it useful to look at the Macmillan website, they have a lot of information on finances and cancer. This page gives details of their Work Support Service and also their booklet Working While Caring for Someone with Cancer: macmillan.org.uk/cancer-inf...
I hope this is helpful. If you need any further information or want to have a chat with us, please do get in touch.
I really recommend the support group Anna mentioned because you need to have a place where you can unload your stress with others who understand. I’m retired but my work identity and income were very important to me and as the patient I would not want my daughters giving up their jobs to care for me. When I was going through frontline chemo all I wanted was to get back to “normal “ life. It took a while to regain strength and I’ve only had a year and eight months off treatment over six and a half years but it’s been manageable. In the beginning everyone is in shock and fear but eventually it becomes more normalized. I hope you can find a way to balance your own life with also supporting your mum with your sister. When my dad had Alzheimer’s my sister and I found a way to alternate visits (we both lived far away) and responding to emergencies. Maybe if you could feel more hopeful about your mum’s prognosis and view the misery she’s going through as killing the cancer and helping her live longer, it might help you not to cry when you’re with you’re wit her?
Thank you for sharing your experience - my mum often says she is itching to get back to normal life. It’s strange because we (her children) are carrying on as normal with work, home life etc whilst also being there for treatment and giving care when she needs it, and just feels like we are living a double life. I think we have gotten used to it now, after a very intense 6 months. Trying to view it like a new life in a way and really savouring every moment together. The initial fear has definitely settled but did take a while! We always try to keep a positive atmosphere and keep things light hearted, somehow even during mum’s hardest moments we’ve managed to laugh together and I know it’s gotten us through.
fellow daughter here - the beginning is very rough. The sleepless nights, the heart ache - all of it. Find an outlet for yourself so you can be there for your mom. Thinking of you ❤️
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