Brain secondaries

[PhillipandBettykid]

Hi I fell recently. Found myself on the floor having face planted the carpet. Apparently I now have secondaries in the brain. Pretty unusual for ovarian cancer. Anyone else had any experience? Obviously I am on the way out but wonder how long I’ve got. Palliative team are organising package of care to get me home. They are brilliant.

[Lyndy]

Sending you a big hug…I am glad you have a really supportive palliative care team. I guess you could ask for a timescale but personally I am not sure I would want to know…it’s your call. ❤️

[PhillipandBettykid in reply to Lyndy]

I think i am with you Lyndy. Not sure I want to know the details. Just enough to plan a few fun days. Thanks for your hugs 🤗

[Heart12345]

Had they done a scan to diagnose secondaries in the brain? And has anyone suggested PARP inhibitors? Having a good team behind you is excellent so that’s great you’re pleased with yours. None of us can be sure when the time will be for us. We are here for you if you need us I have great faith that even if we are on our ‘way out’ of this world there is a beautiful place for us to all meet up. Sending you a hug too 🤗

[PhillipandBettykid in reply to Heart12345]

I face bit the carpet. My carer got help. It was unusual to fall like that so they did a full CT. Saw some anomalies on the head bit so followed up with a MRI which confirmed diagnosis. I feel at peace well at least will do when I get out of here. Hospital is no place to be when you’re ill (grumpy ex nurse). Thanks for your support.

[organicinna in reply to PhillipandBettykid]

Hi darling - What is " Care package " ? Sound like All inclusive holiday )))

[PhillipandBettykid in reply to organicinna]

That would be good. I think it is more like having carers in so they can look after me and I get to spend my energy on what I want to do

[Tulips66]

I am so sorry to read your devastating news, I am sure it was a big shock when you were told. If you really want to know how long you have I am sure your palliative team can give you a fair idea. Some people might not want to know but maybe you feel it will help knowing so you can but your affairs in order, let your family know your wishes & make the most of your time left with them. I just want to say you sound like a very strong & brave women & all I can say is I wish, when your time does come, that you have a very peaceful, pain-free passing. All my love & lots of Hugs Xx💕💔

[PhillipandBettykid in reply to Tulips66]

Thanks Tulip’s. I think I am just going to take it day by day. The care package sounds good so getting that in place and getting out of hospital is step 1.

[Caleda4]

Good to know that you have plenty of support. Hopefully you will be out of hospital soon. Try to enjoy as many good times as you can. Thinking of you.x

[Neona]

I have read about ladies with ovarian cancer getting this - I think treated by gamma knife? Maybe get a couple of other specialist opinions. Sending hugs .

[Trickysite]

Your attitude is brilliant and a lesson we should all keep with us. My understanding is doctors can never accurately predict how long but I guess they can give a parameter. In the meantime, may we all get the most fun out of every day. The proverbial bus could hit anyone on this planet every day. Meanwhile, let’s party and make a point of maxing on the sense of humour we have been blessed with.

[AuntyOrange]

"Don't count the days, make the days count". My brother was told he had 3 weeks, that was in June 2021!! He's still with us & still fighting. Good days & bad days. We all have those. I'm like you, I'm not giving up yet (still having treatment for 3rd diagnoses in 7 years) but I'm reconciled to a peaceful exit when my turn comes. It will happen one day but not today 😉. Enjoy every day you have. 💜💜

[PhillipandBettykid in reply to AuntyOrange]

I like that making the days count. Sounds good. I like this one too. “My candle burns at both ends; it will not last the night; but ah, my foes; and oh,my friends - it gives a lovely light!” Edna St Vincent Millay

[Rankij11]

Just wanted to wish you the best as you enter this phase of our disease . I hope I’m brave like you . Just wanted to add that I think brain mets are rare in ovarian cancer ,but happens more now as we are all surviving longer with new treatments. NHS amazing . It needs our support.

Get home soon

Jennifer

[Floss74]

I remember posting similar to this when my mum's were discovered - they were quite extensive. Everything seemed hopeless, but they offered her full brain radiotherapy, more chemo and then niraparib. She's not great but she's still here 2 years later! I remember our oncologist saying that they are seeing more ladies with brain mets due to treatment keeping patients alive longer. There is a study in London I think where the oncologists are feeding in their data and it's got a lot of attention. I hope your team come up with a similar plan - my mum's mets did shrink and she's stable at the moment.

[PhillipandBettykid in reply to Floss74]

I have been terminal since 2014. Had 9 doses of chemotherapy and rucarabid, so thought it was time to call it a day. I’m tired.

[RoseMS]

You sound like an amazing person. Please do ask about treatments mentioned above if that is what you feel. Sending a prayer of strength, its Palm Sunday.

[PhillipandBettykid in reply to RoseMS]

Thank you for your Palm Sunday prayers. I hope you are blessed too.

[SUE7777]

I have heard of people getting Brain mets and being treated particularly with parps. Talk to your team and all the very best. Sue xx

[Differentforgirls]

How amazing are you! Sending love & hugs for however long you have. Sounds like you’ll do your best to ‘live’ it. Inspirational. Hoping when the end comes for you it’s a peaceful & comfortable one 💕 xx

[Realistic]

Please don't think how long have you got, think about what your going to do next week they may be able to manage the brain tumour. I have a managed brain tumour and had 3 major surgeries in the last 15 years. Obviously yours is different but they have the beam dont know if its possible for you to have. But get the best advice lve told the story on here so many times sorry girls fir repeating myself ,but my husband got 3 months to live 30 years ago and he now helps me with my battle with ovarian cancer. So l know there canBe light at the end of the tunnel. Just hope you get the right advice 🙏 sending all my love SheilaFxxx

[Trickysite in reply to Realistic]

Keep telling the story, please!

[JustKBO]

Full of admiration for you and very glad your brave post has allowed for 2 stories of hope. On the one hand a reminder of our battle with this disease and on the other a reminder that we must always try to be positive because our mind and bodies can still turn up little miracles. Good luck and big hugs.

[TeddyC]

So sorry you’ve had such dreadful news. I’m afraid I can’t offer any insight into your problem, just wanted to send my good wishes to you. I have to say you sound incredibly perky and positive, considering what you’re going through! I hope when your time comes you have a peaceful passing and lots of good times before then. ❤️

[Litchick]

Hello Im sorry to hear your latest news, it must have been a bit of a shock. For today I’m hoping you are comfortable and it’s not too frustrating being in hospital when you want to go home. Wishing you home soon and hoping and praying that you have energy to do things that give you joy, comfort and peace for as long as possible.

Gentle hugs.

Jan.x

[delia2]

Sending you hugs and hopes for some quality time at home. You’ve had quite the saga since diagnosis. I understand your being tired! Xx

[Nus38]

Hello

Sending you love. My best friend also had secondaries in her brain due to different kind of cancer (vuval melanoma) She was offered radiotherapy and gamma knife. She chose not to go ahead with this treatment. She was given a time period for expected life span and she passed away pretty much within that time.

Make the most of your time whatever you chose whether to have more treatment or not. I don't know whether i would like to know my expected life span, as many people go on to live much longer.

Wishing you well

Nus xxx

[Ruebacelle]

Hi. Someone earlier had a recurrence we t to brain and che.o took care of it. Good luck

[PhillipandBettykid in reply to Ruebacelle]

I have given up on chemotherapy, quality of life too poor with it

[PPSCENE]

Sending you lots of love and hugs. Keep soldiering on brilliant lady xxx 😘

[PhillipandBettykid]

Thank you so much for all your care and encouragement. I am blessed by us band of battlers.