Scared: Can’t stop crying. Have had 5 and half... - My Ovacome

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Scared

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SheilaAD

Can’t stop crying. Have had 5 and half years of chemo for OC and now suddenly it isn’t responding to anything and I am told I have maybe a few months. I am absolutely terrified of leaving my family, I am 62. I feel really silly and can see my children suffering terribly trying to stay upbeat . Am I being being daft or is this just another process you go through with this horrible disease?

21 Replies
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OvacomeSupportAdministrator

Dear Dicie,

I am sorry to read of the change to your treatment plan and the distress it has left you in. If you would like to talk it through with a member of our support team, please do give us a call on 07503 682311. We are here to support you.

Best wishes,

Laura Nott

Support Services

Oh Dicie

I am so sorry that you have received that news. I can only imagine how devastated you are. Have you been offered any support or couselling at all. It maybe worth asking if there is anything available to help you process this latest news/ diagnosis. I wish I could offer you some comfort. It may be an isea to see what support is available for your family too as they may have lots of questions that they can't ask you. Are there any charities that can offer this kind of service?

I don't know where you are based or how it works for you, but in the UK we have Macmillan Cancer support and specific types of cancers tend to have individual charities.

I'm just waiting for a diagnostic CT scan myself so I'm at the not knowing stage - being a nurse doesn't help because I'm more pragmatic with myself than I would be my patients.

Also, perhaps look at what alternative therapies are available, and if you feel you need it, referral to a second opinion.

I'm kind of waffling now as I have no words that can take away your hurt and shock. Please do involve your family as much as possible in whatever comes next though. Allow them to be as involved as they are comfortable with and be as informed as possible.

I hope you find the strength to fight the next fight. And you are NOT being DAFT at all (that word is a very British word so are you in the UK?). I think it's a very human and motherly reaction to your news.

Take care xxx

Nothing is daft or silly Dicie, I know that sooner or later I will be where you are and my kids will be trying to hold it together too. I hope that they and I won’t succeed, that we will fall apart and say what we really need to say to each other. You have some great suggestions for support here, don’t be stubborn like me, let others help you xx

I am so , so sorry to read this , 62 is by no means old and you could have reasonably hoped for a lot more time. I have tried to explain to my frinds that on dignosis I felt like I was grieving for my whole life most especially my immediate family and my less long future - I am sure that your feelings are much more intense than this initial grief was . So there is nothing at all daft in feeling as you do, you have had the worst news. I agree with Lyndy in that it would be good for you all to just fall apart together, your children don't need to be upbeat and just say and do all those things that you need to - it is not an upbeat situation. I am hoping as others have said that there will be support through a hospice or other forum to get good pallitive support . Wishig you the very, very best and hoping that you have more time than has been suggested. XXX

Have you considered seeking a second opinion, there maybe other treatment options or even a trial.

Best wishes, it must be devastating news to hear.

Hi Dicie, I'm so sorry to read about your distress. How about a trial? There are several out there for women who are platinum resistant (if you are) so it may be worth considering. Can your team refer you to anybody or can you pay for a private appointment at The Marsden via zoom? The consultant there could tell you if she thinks there is anything suitable for you. I hope you can find another way to have further treatment. Thinking of you, sticky3006 x

I would strongly recommend a second opinion. It is possible you may be able to get one by video link. Chemo never worked for me and I went to London to see a specialist- I decided to pay to get a quick appointment. There are treatments called targeted therapies- I have been on one for 3 1/2 years so far but most are in trials so it may involve trying to get onto a trial which I also recommend. Just because your local hospital doesn’t have a suitable trial doesn’t mean that there isn’t one as I found out. I have been travelling from Cornwall to London for the last 3 1/2 years to the UCLH Research Facility. The inhibitor that I’m on is believed to resensitize to chemo I believe although is in early stages of trials but there may be others.

Of course you're not being silly; it's completely understandable to feel like that. I think we all dread hearing that news. I'm your age and also have been treated for 5 and a half years. It's not dying that is my main concern, it's just not being there for my family that really gets to me. We're here to support you in a safe space to share all the deepest worries you don't feel you can burden your family with. x

I'm so very sorry you've been given this news. Your reaction is completely normal. I know I'll be in your position one day and can only try and imagine

Thank you everyone for your support, I have a wonderful family and the best hospice nurse you can imagine. I have had so many chemos and trials over the years everything seems to have stopped working. I know I will get through this awful fear and come out the other side. Think I have had every chemo and every chemo tablet there is over the 5 and half years so unless something new comes out soon that’s about it. Love to all ❤️

I'm so very sorry you've been given this news. Your reaction is completely normal. I know I'll be in your position one day and can only try and imagine how you must be feeling. I know like you I will be terrified of leaving my family. There has been some wonderful advice here. All I can add is that you are still here with your family now. I wish you all the strength, when you're ready, to fight back and not let this damn disease monopolise all your time and thoughts., Enjoy spending time with your family and make more happy memories together. I sincerely hope that time is much longer than your dr has suggested.Liz.

I am so sorry to hear what you are now going through. If you aren't already doing so maybe contact your Doctor and ask for a low dose anti anxiety drug that may take the edge of your understandable anxiety. If you can look back to when you first recieved your diagnosis and remember how you dealt with that and draw down the things that made dealing with tolerable for you that may help you now. Ring the support lines that are available too. If you have a support nurse too. I send you love and positive vibes.xx

I am at a similar stage Dicie. Coping with recommendations from experts isn’t easy. I don’t think they always understand what we are going through. I agree with other get a second opinion and chat to a support nurse

Hi Dicie, I'm sorry, no you're not daft, we all have to cry sometimes. All feelings pass and I hope you find the most positive way to cope and move forward with this. Never give up X

Dear Dicie,You have received the news we all dread & am sure we would all react as you have. However I too am platinum resistant after 3 years treatment for Epiltheal stage 3 OC. As am hormone sensitive, have been put on a breast cancer drug Letrozole 1pill Per day at home) 2weeks now & am coping ok!!!

Not a cure but hopefully will give me longer. Hope this helps, thinking of you, Iside X

I

Dear Dixie. You are NOT being daft. I too dread leaving my family and at times I feel so sad it’s like I’ve swallowed a huge stone. Just tell your children how you feel, tell them you love them and don’t want to leave them demand hugs. They’re probably wondering how to support you and giving them permission to be sad will help you all. It’s time to build memories that they will hold in their hearts forevermore that is why you will never be forgotten and always be loved. Good luck lovely lady. Thinking of you. X

Hi DicieI am in a very similar place. 5 years chemo which is no longer working.

Tried a hormone treatment with no luck.

Crying at the drop of a hat!

Got one last chance of a possible trial, seeing Prof next week but have gone downhill since then so fingers crossed again.

Hoping a lot of swelling is ascites which I hope to have drained prior to this. Anything to make things more comfortable!

Are there any trials that you could be a candidate for?

I wish you and everyone going through this stinking disease lots of luck.

Love

Janet

Hi Dicie, I am so sorry that you have received this news & of course what your feeling is totally natural except the feeling silly bit! I hope that you will find a trial that can maybe give you a few more years or like a lady in this country who was given a terminal diagnosis over 3 yrs ago but fought to get a drug which wasn't licensed here. It gave her a good quality of life too. Unfortunately it has now stopped working but she is still not giving up & is now gone to the US & is on another trial which is working for her again so please don't give up 😢. Hopefully you can still grab back some more time to be with your family. That's the one thing I struggle with myself that I won't be around to see my young adult daughters finish college or when they get married. Thankfully my treatment is still working although I started chemo again in March for first recurrence, after only finishing front line chemo July 2019 & maintenance Sept 2020 so I am hoping I will get a longer reprieve after this but unfortunately none of us know when we will be faced with the same news you have received. I am not sure any of this will help you in any way but I just wanted to say I will be thinking of you & hoping there's still hope for you. I don't even know you but my heart is still breaking. Hugs 💔🌺

Have a good cry then find out if there is something they can try. Make the most of every moment but explore and hope for a palliative protocol that will help you navigate. Really big hugs from paris

I can only echo what these other ladies said. Maybe there is a trial you could be on and the palliative care can give you something for anxiety and sleeping aids. Hope things go smooth for you. Sending a hug from the U.S. Donna

Very sorry to read of your news - it sounds utterly devastating. Have you thought of ringing the Care Oncology Clinic in London? Much love to you 💕 Mel

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