Struggling mentally

[Ronmum20]

I was diagnosed stage 4 in April was told I was inoperable but after 4 chemos the surgery went ahead in August, which they tell me was successful but I had so much removed and ended up with a stoma . Due to restart chemo Monday, then due to BRCA gene will be on olaparib. I really struggle mentally with this diagnosis and have many times wondered what is the point of all of this when being stage 4 it’s just going to keep coming back and back. I’m heartbroken for my teenage children and all my family

[candyapplegrey]

You poor thing. I'm so sorry that you're having to deal with this. It's natural to be devastated. Have they said whether the stoma is reversible?

I just have to say that there are a lot of women here who had a Stage 4 diagnosis but are still going strong and enjoying their lives.

Having the BRCA gene seems like a bad thing but it does open up other treatment options and maintenance drugs like Olaparib.

If you want someone to talk to when you're feeling desperate, you could call someone at Ovacome or talk to Macmillan. Or vent here.

Virtual hugs and hope you feel better. Just deal with it one step at a time. xx

[Ronmum20 in reply to candyapplegrey]

Yes it’s reversible, said they’ll see me in 4 months to discuss it, really don’t feel like any more ops though after this one x

[cmania in reply to Ronmum20]

You can definitely wait for this decision. Your surgery was quite extensive. Mine was as well and ended up having more surgery because the first one was a sub optimal debulking. I still have my stoma 9 years.

[OvacomeSupport Partner My Ovacome Team]

Hello Ronmum20,

I am so sorry to hear that you are struggling at the moment. I can see that you have already had a supportive reply from candyapplegrey and I am sure that other members of our community will be along soon.

I am based in the support team at Ovacome and I just wanted to reply to say please know that we are here to support you. As candyapplegrey mentioned, we have a telephone support line which is available on 0800 008 7054 Monday – Friday 10am – 5pm. Alternatively we can arrange a Zoom call if you prefer. You can also contact us by email on [e-mail]. We are here to talk about anything that’s on your mind or just to have a friendly chat. We can help you find local sources of support too.

We also facilitate a range of different support groups, such as a stoma support group which we would be very happy to give you more information about if you are interested.

Candyapplegrey also mentioned Macmillan. They have a helpline which is available during the evening and weekends too. You can contact them by calling 0808 808 00 00 from 8am – 8pm, 7 days a week.

Please don’t hesitate to get in touch if you would like to talk things through or if there is anything at all that we can help with.

Take care,

Cathryn – Ovacome Support

[Maldive]

Hi Ronmum20

I to was diagnosed with stage 4b HGS ovarian cancer, I have the BRCA 2 gene fault, I was diagnosed in February 2019 and they didn’t think I’d escape hospital but I did. I had 4 rounds of chemo, an operation and then more chemo followed then by 2 years of Olaparib. My CA125 has remained at 5 and I’m on 6 monthly blood tests and chat with CNS. I have 2 kids one in his 30s and one who’s now 18 he was 13 when we told him and with the support of child bereavement uk and his school and family he’s got through it. My deal with god was to live long enough to get him a job, he got this 2 years ago and I’m still here. Don’t get me wrong i still feel like shite quite regularly and my mental health is shot at, but hey it’s better than the alternative. Keep putting one foot in front of the other, fake it when you can’t and have a good cry when you’re in the shower, you’re a mum you can do this and like everyone else on this site pray that you might be a survivor. Keep talking to people and ask for help if you need it and pour your heart out on here that’s what this site is for.

Loads of luck and love

Dee

[Sheena13]

I honestly have so much empathy for you right now, my son was only 13 when I had breast cancer, he’s 33 now married with my 2yrs old granddaughter. I was lucky it was found early. Reach out Macmillan cancer support, they helped do much not just for me but my son. You’re in darkness right now but that will lift in time, you’ve done the right thing reaching out on here for support. Now get all the support available in the real world too. I know it’s a cliché but you’re stronger than you think & you will get through this and so will your kids. ((Big hugs))

[Motiva]

Dear Ronmum,

It is the most awful of times that you are existing in. You are still absorbing so much information and making adjustments as well at the trauma of surgery and destruction of chemo.

However for me my mind did change to allow me to appreciate all I have endured and got through. The BRCA gene allows you access to the life extending olaparib. As time passed and I worked with a psychologist , counsellor, Ovacome … I could appreciate each day as I felt better as a gift I thought I would not have and enjoy doing things I thought were just routine - walking the dog, chatting to my friends… The diagnosis is always there but somehow and I didn’t think it was possible when I was where you are, you learn to live well with the diagnosis and it isn’t front and centre but just something that you can mainly put into the background. Is is extremely tough but the olaparib will help you gain more time. I also used all the resources I could find from the serious - psychologist to the playful and fun- Ovacome singing group (all muted so don’t let a lack of ability deter you!)

You have support here,

F x

[JingJingLove]

Hi Dear, totally understand how you feel. I was crying for 3 months everyday, feeling desperate and my life is going to end. I am only 42 and have 2 lovely young children. I am HGSOC stage 3, I had my surgery this Apr at Lister Hospital self fund,coz would like to get more chance to survived and void waiting time with NHS. But I had so many complications after the surgery. The surgeon is suppose to be a good one, but unfortunately I had to go back to the theatre in 7 days to sort out my bowel obstruction and I had a fistula between my bladder and vagina due to the surgery. They wanted me wear catheter for 3 months. That completely knock me down. I refused. I couldn’t cope with it. And now I finished my 6 chemo safely (had another bowel obstruction before the 4th chmo, luckily it resolved itself, end up staying at Chelsea and Westminster hospital for 4 days without any water and food) and now I need to have another surgery to fix my fistula. Let NHS find a psychologist for you, I had 5 sessions with y psychologist, that helps a lot. Pls don’t keep everything for yourself, cry whenever you wan to. You will getting better, you good days will come! Wish you all the best!

[Pawpaw22]

We can all understand how heartbroken you must be. It is not easy to psych yourself out of this mindset. Dear sister, you won't know the true situation until you have the recommended treatment. You have been through major, major surgery. Maybe it feels as if all your available strength has been utilised. This is the time you have to dredge up some more courage. Rest all you can, do whatever the medical team suggests. If you have side effects or setbacks, ask for help. That old adage is true - one step at a time. Sending you hugs and love.

[KelOC38]

I don’t have any advice to offer you. Just know that you’re not alone. The women on here are knowledgable and in those dark moments we all face someone will alway reply with a little bit of hope. I also find it helps to just say F*ck cancer a lot! X

[LovemyJackRussell]

Hello, Ronmum20I am a little bit ahead of you, I was diagnosed with 3C last August, had surgery at Christmas after 3 rounds of chemo, then more chemo. I was also left with a stoma.

You are at the most difficult stage, just after your operation and facing more chemo. Your body has been through a lot so it is natural to be feeling down. It will get better, I promise you.

Other things may be thrown at you (I got COVID, had a blood clot so was taken off my first maintenance treatment, and put onto Niraparib instead), but somehow we cope. Being positive helps - we are still here, still around for our families! And there are plenty of people on here still going strong after many, many years, so take heart.

Having a stoma is not much fun, but you will get used to the day to day management of it and the stoma nurses are a great support. Like you, the thought of another operation was unbearable just after the debulking op, but a few months down the line I have decided to go for it. I am feeling incredibly well at the moment (and you will get to this stage, I promise!) so I feel that I can cope with another operation.

Many people stick with their stoma, and that's fine, too. Mine is small bowel, and it is the restriction on healthy food that is the driving factor in my decision - I'm looking forward to having sprouts at Christmas!! Which is a great position to be in, considering that when I was first diagnosed I didn't think I would make last Christmas, never mind another one.

It is very bad luck to get this disease but we are SO lucky that treatment has come on in leaps and bounds and that we live to tell the tale.

I'm sending you hugs and strength. It will get better! xxx

[Ronmum20 in reply to LovemyJackRussell]

Thanks for your reply, I really hope to feel as good as you in a few months. Emotionally the surgery has really set me back, which I’ve been suprised at! x

[Katmal-UK]

Totally get how you are feeling. I was diagnosed stage 3b BRAC2 HGS OC in October 2007 and told I had 2 years. I, ike you had teenage children and asked myself what’s the point of all the treatment. Well, obv still here, despite 2 recurrences and have currently been trialling Olaparib for nearly 11 years. Currently NED for over 11 years and my onc believe I may be cured. That’s the pout, to keep going, to try and get time with yr family. It may be beneficial if you were to try counselling, trust me it helps. Sending you a big hug xKathy xx

[Ronmum20 in reply to Katmal-UK]

Thanks for your reply, amazing to hear how well you are doing. I’ve been told I can have Olaparib for 2 years only, can I ask how you have been on it for so long? x

[Rankij11 in reply to Ronmum20]

I think if its working for you and you’ve never been NED you can keep going. That would exclude trial people , who would have different rules I guess

X

[Katmal-UK in reply to Ronmum20]

I’m on a clinical trial. Originally SOLO2 whereby it’s taken until no longer of benefit. I was NED when I started. The trial ended a few years ago and I am now under ROSY-O which is a rollover study.

[Rankij11]

Please don’t give up.

I was diagnosed inoperable in 2019, and BRCA2.

No surgery for me , just frontline chemo , followed by Olaparib . And I’m still here . So there is hope ,because you are just starting and all the time things are changing. Olaparib was only just coming into treatment plans in 2019.

I know you are younger , which makes it even more overwhelming, but fight for your kids.

Best wishes and hope you will start to feel better once you get chemo done , no-one underestimates that!

Jennifer

[Ronmum20 in reply to Rankij11]

Thank you x

[Newbery3]

We all hear you, and we all have the same grief ❤️‍🩹 You must fight this fight as hard as it is for your family! Maybe get in touch with overcome support, i did at the start of my journey. I'm Stage 4b and in Remission right now, but my god, it was a fight to get here 😰but here I am! I have been on 6 holidays this year and am going again in 2 weeks, let yourself grieve but dont let it consume you, get up and fight with all you can muster 👊💪you may have years and years ahead of you without a reoccurrence 🥰🥰🥰 we have to hope for the best X big Cwtch xx

[Ronmum20 in reply to Newbery3]

Thank you 🙏 how far into remission are you?

[Newbery3 in reply to Ronmum20]

Sorry, I was out yesterday, I have been in Remission since December 2022. I had my operation done private by Prof. Christina Fotopoulou, as the NHS told me I was inoperable til 3 chemo, then I didn't hear from my oncologist til my 4th chemo. She told me that she MDT still wasn't happy and there was no room on the operating list! So I got a 2nd opinion with the Prof and was in London 6days later! She is amazing and cut the B+×@##d out, then followed by 2 more chemo 22 avastin and 2 years opalarib and I'm still on that til end January. X I have some mentally bad days, and I'm not the same person (that grief was/is the hardest) but I still have life and a future as every moment is a Future X

[Ronmum20 in reply to Newbery3]

Sounds very much like my journey, I was told inoperable and after 3 chemos it went ahead. They said they got it all out but I worry so much they haven’t! 2 more chemos to go and then I’ve been told 2 years of olaparib with Avastin for a year! How have you found the side effects for olaparib and avastin? x

[Newbery3 in reply to Ronmum20]

Everyone is different also my side effects may be different to yours but very fatigued at 600mg so dropped to 500 then 400 and stuck at that ok, I've had stiff joints/ neck ect, I take anti histamine everyday and that helps. Turns out I was blaming olaparib for my side effects and once I finished my avastin my energy is better, joint stiffness and neck pain gone! Also I've put on 2 stone! I try and eat healthy but the weight isn't moving, I've decided to tackle that once I finish olaparib next year 🤞my ca 125 was 2198 and now sits between 7 and 9 X

[SopSinger]

So much good advice, so I'll just add a big hug. One step at a time, you can do this. (And recurrence is not inevitable, so don't listen to anyone who says it is!)

[Hotlantaphatz]

I am sending you hugs and prayers. We understand how you feel. Do whatever you need to do; cry be angry etc. but don’t stay there too long. You are here. You have family to love on who loves you! They understood what you are going through. Much love!

[delia2]

Hi. Everyone has given good advice. I want to say two things. First the emotional trauma and depression are the worst. I’m an innately cheerful person and I have had many dark days over the past six years. Many find antidepressants helpful but I eventually bounce back. I have found in person support groups or events most helpful, though Covid prevented a lot of that. Second Olaparib was literally a lifesaver to me as for Katmal. I had to have a reduced dose and it still worked. I only wish I could have had it after frontline. You are at the roughest point physically now and that is depressing but it WILL get better!

[Leniko]

I’m stage 1C but have had 3 recurrences which required chemo and radiation. Never fun, but I want to stick around. It sounds like you have a lot to live for. Maybe a therapist is a good idea since speaking of your mortality will be upsetting to your children. Sending much love, prayers and hugs.

[Tealgirl7]

Go forward and enjoy life. I suffered for a year with my family doctor not listening to me. I was diagnosed in 2006 with stage 4. It is now over 18 years and I have enjoyed watching five grandchildren grow up and off to university. You can do it girl.

[Ronmum20 in reply to Tealgirl7]

Wow amazing!! x