I was diagnosed with stage 3 high grade cancer in March at the age of 54. I am wondering if others have been diagnosed at a similar age as I sometimes feel I am the only one. I had a surgery last year followed by sepsis and a stay in hospital! My chemo finished in mid September and I am now NED and taking Nariparib. I am trying to enjoy life while I am well (ish) but am struggling to cope with everything. I have two daughters, one is aged 17 and is currently going through a very difficult time. I find I do not have the will or energy to support her which makes me feel very guilty…
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Mintybiscuit
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I am in your age category and also started on PARB inhibitor maintenance plus bevazucimab infusions. The fatigue is an issue and concentrating on more than one thing at a time.
I have been to two sessions of the Maggie’s ‘What Next?’ course. If there is a Maggie’s in your area they are worth a visit for a 1 to 1.
They also provide support for family members which may suit your daughter.
The post initial treatment turns out to be another unexpected challenge too.
If you are within striking distance of Barnet, there's also a lovely support group based at Cherry Lodge. Even if you're not within striking distance, you could join the Zoom chats. cherrylodgecancercare.org.u...
I was diagnosed last June, chemo finished in Oct, debulking surgery in Nov and started Avastin last week. I am not NED but thats ok too. Oh I'm 51
I can just about do the normal "Mammy" duties, my kids are 14, 13 & 10. If anything out of the ordinary happens I try my best to manage. Have you contacted any local charities that may offer counselling for your daughter?
I am so happy that you are now NED just take one day at a time.
It sounds like you have your hands full! Congrats for managing the “normal mammy duties”. It must be difficult. I hope everything goes well with the Avastin. I am being monitored monthly on Nariparib (bloods and blood pressure). I’m assuming this also happens on Avastin?
It’s a long story with my daughter which has been going on for years. We have sought support many times… it has just got worse again. Perhaps while I was having chemo my husband and I “chose “ to believe she was doing better. Reality has now well and truly hit!
Yes busy, busy. God I wish for normal days. Instead of being tired etc. But look still here n happy to be. Yes back up again in 2 weeks & all will be monitored.
While you were having chemo you chose to think everything was going to be ok, n I would have done the exact same thing. You had enough on trying to get through it.
I know something totally different....what hobbies is your daughter interested in? My 13 year old suffers a lot with anxiety and about 12 months ago she started horse riding and she is so much happier. Its only once a week but changed her completely.
Hi Mintybiscuit, please don't feel guilty. It's really difficult situation to be Mummy and face such big problem with Your own health. Be mild for Yourself. I'm 56, diagnosed 54 HGC C3, now post Avastin treatment (22 times every 3 weeks) and on Olaparib. 😘
Sorry to hear that. I also feel I’ve aged a lot. I suppose that’s inevitable after the last year. I’m trying to keep fit by walking. I used to run but I’m too achy for that now.
Sending you a big hug Mintybiscuit! Don’t forget that you are doing plenty just by being present and loving your daughters! You don’t have to solve everything for them (although us Mummies always feel we should). Listen to them, model self care for them and tell them how much you delight in them ❤️
They will carry those lessons for the rest of their lives xx
Hello, Mintybiscuit,My mother was diagnozed with 4a stage, 4 years ago, when she was at your age (I was 23 back then). She's currently on Olaparb and doing well, thank God. As a daugher myself, I would advise you to not worry for your daughers - just being there and listening to them (even if you don't have maximum energy, you're not always smiling, etc) is perfectly enough. Take care! ❤️
I am so glad to hear that your mother is doing well on Oliparib. It’s really helpful to hear a daughter’s perspective. I will try to take your advice . Best wishes
I was 51 when diagnosed with stage 3b high grade serous ( just like yourself). That was 6 years ago. I have had 3 surgeries plus chemo after each surgery. I was on Niraparib from July 2020 until April 2023.
Once my frontline chemo finished, everything I’d been through came crashing down on me. It took over a year to accept it all.
One thing that helped me was a six week course called HOPE. It is a MacMillan run course to help cancer patients once they’ve finished treatment. It’s a nationwide course so hopefully there’s one near you.
Plus there’s an article called After treatment, what’s next by a Dr Peter Harvey. Worth a read in my opinion. Something else which helped me come to accept.
So sorry your daughter is having a tough time. I hope she gets any help she needs for all your sakes.
Life can be so tough at times. Be kind to yourself & take very good care please xx
Hi, thanks for your message. It sounds like we have had similar experiences. I definitely feel like everything has come crashing down on me. I have been told about Hope and will see if they run courses at UCH.
I went through similar situation was diagnosed HGS 3B in April 2020 age 52 after hysterectomy. Unfortunately i couldn't have chemo as had bladder injury during surgery and then bladder surgery 6 mnths later. Had reoccurance 14 mnths later and then chemo on Lynparza now for 2 yrs and my 18 yr old daughter im having difficult time with even now. Im waiting on scan as bloods have risen xx
Thanks for your message. It must be stressful waiting for your scan and coping with your daughter. From what I’ve read bloods can rise for a number of reasons. Take care
It's great to hear that you are NED. I am 53 and had similar journey. All the side effects you are experiencing is due to medicines not because of the disease... You are NED, please try to focus on this wonderful information. You will feel better day by day 🤗
I was diagnosed 3a HGSOC last May, just before my 54th birthday, I finished chemo just before Xmas and am awaiting scan results to see if I’m NED 😩, then if all goes well a parp as I’m HRD+. I’m dreading having to take more medication but equally lucky to be offered it, it’s tough isn’t it. I shed tears wondering if I’ll ever be the woman I was; I feel like I’ve aged 10 years when I look in the mirror and when I walk down the stairs in the morning. It truly is a life changing event and I grieve for the woman I was. I too have 2 daughters aged nearly 27 and 30 and the youngest one used to be very problematic at 17, she’s fine now but it did take a bit of time for her to “grow out of it”. I can only imagine having to deal with that whilst going through this nightmare. Stop feeling guilty, I’m sure your daughter knows you’re doing your best under circumstances that are out of your control, or if she doesn’t now she will do as she gets older. My 1st grandchild turned 1 on the day I found out id been up-staged and it was one of the toughest days of my life pretending to be happy and not disclosing the news and I feel guilty when I look back on it as I wasn’t myself, obviously, but remember you feel guilt because you’re a good mum, it’s difficult to sometimes find the strength just to get up in the morning when you’re going through treatment. I’m hoping everything improves for you in time, I’m sure it will. xx
Hi, I was diagnosed at 48 and was incandescent with rage at the thought of my life being cut short. But I had surgery and chemo, there weren't any PARPs or other maintenance treatments then, so I've just been NED ever since and I'm now nearly 66. Good idea to seek some counselling or support for your daughter if she's struggling, but let her know that you love her just as much, you just aren't able to do everything for her.
What stage were you when you got diagnosed and what did you do after surgery & chemo was done. In other words, how often did you do scans to make sure you were NED? Did you do any holistic treatments afterwards?
That's amazing you are 18 years NED. I just love hearing stories like these.
Stage Ic (with a side of endometrial stage Ia). I was followed up by my oncologist for just under 5 years, have done CA125 test once a year since then (until the pandemic struck, haven't had one since then). Nothing else. Went back to work and lived my life, and have just retired and spend most of my time making music one way or another.
I've quickly read through everyone's replies and my only other suggestion is to try the Ovacome Support Team on 0800 008 7054 and look at Ovacome's information sheets, Support Groups and webinars, which many of us find helpful at various times throughout our treatments and survival journey, wherever that takes us.
Hi mintybiscuit. I booked onto the free Bupa counselling sessions offered by macmillain after my treatment finished which helped me navigate my way to life beyond cancer. You can book these via macmillan website. macmillan.org.uk/cancer-inf...
I was diagnosed with Stage 4 OC when I was just 60. My son is 24 now but has had ongoing severe mental health issues. The things that helped me were antidepressants, a mindfulness course which helped me to live in the moment, and a support group. Being in the group made me realise that I can't fix things for my son however much I want to. I can only be there for him and it's ok to look after myself. One day at a time... Best wishes and good luck x
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