New: Hi my name is Sheenagh. I am new to this... - My Ovacome

My Ovacome

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SEckett profile image

Hi my name is Sheenagh. I am new to this group. I was diagnosed with stage 3 ovarian cancer in June. I was diagnosed within 3 weeks of seeing my GP. The only symptoms I had was bloating. In those 2 weeks I had 10 litres of fluids drained. After first session my markers had almost halved and I had my second chemotherapy last Friday this time I ached after for a few days. I am struggling emotionally. I ask myself how long do I have. I hat told by my nurse and oncologist that people can live years with this disease,

33 Replies

Welcome SEckett,

You will find plenty of support in this forum - and also many people who have lived with OC for many years. I am one of those; back in 2016 I was diagnosed in similar circumstances to you (although we are all different we do share similarities).

You are welcome to read my profile (although it’s very long!). Back in 2016 I didn’t expect to still be here 5 years later and yet here I am, about to drive off in the camper-van I share with hubby Steve and dog Alfie.

I did have to take a break from my 3rd course (3rd line) of chemo (started in February and due to finish end of August) but the trick with OC is to learn to live with it and cope with all the problems it throws at you. You must take control!

I have a CT scan booked for tomorrow, before I go off on our tour of Northern England and Ayrshire, Scotland, and when I get back it might be good news - or bad - but I’m just living in the present.

You may need more support so contact MacMillan, your local Hospice, or maybe have a word with the Ovacome admin. There is a lot of help if you need it.

Don’t despair, just wait and see what others tell you.

Good Luck and Hugs,

Iris🤗🤗

SEckett profile image
SEckett in reply to Irisisme

Hi Iris,

Thank you for your support and comforting me. I hope you have great time on your travels. Sending you virtual hugs.

Miriamn57 profile image
Miriamn57 in reply to Irisisme

So true about your scan, and you are right about living. Have fun on your travels!

Oh, sorry, I see you have your name in your post, Sheenagh, naughty me, I should have used your proper name!Iris🙄🤗

Hello Sheenagh, welcome to the group where we would all rather not be, but where there is hope, support,inspiration and information.It sounds to me as if everything has happened super-fast to you and you are understandably feeling overwhelmed with it all. It is good they have got on with treatment quickly but you will have hardly had time to process what has happened.

It is difficult not to ask the ‘how long’ question and in response I can only say no one knows how long they have got left with or without a cancer diagnosis. However there are new drugs and treatments for Ovarian cancer being discovered that give hope that if not cured this flipping disease can be held in check.

Alongside the different treatment options there is emotional support available for you. I accessed mine through McMillan and it has been a god-send, a safe space in which I can voice my worst fears and anxieties. Your specialist nurse can advise you how to find it too.

Meanwhile, I will hold you in my thoughts and prayers and send best wishes and a great big hug.

Jan.x

SEckett profile image
SEckett in reply to Litchick

Thank you so much for your support and reaching out to me it means a lot. Sending you love and hugs. Sheenagh xx

Oh Sheenagh, this is dreadful for you but do take heart that the nurse is right. I was literally on my way off this planet when they admitted me late last year but my CA125 is down from over 3000 to 50 something and I am well. The medics can control the disease. I realise the struggle you are having as I has that too. Speak to your GP or oncologist about counselling it will help. Take good care xxx

SEckett profile image
SEckett in reply to ritabon

Hi,

Thank you for your support. I am so glad that I joined. Thank you all for reaching out to me Sheenagh xx

Hello Sheenagh, I am stage 4 hgs 6 year survivor. I was pretty ill last year on my first recurrence but got through it and feel well again now. Don’t feel that you have to take everything in at once. Try to deal with today and leave the longer term questions to take care of themselves for now xx

SEckett profile image
SEckett in reply to Lyndy

Hi Lyndy.

Thank you for your support. I feel inspired by you and how amazing you have done. My markers were 404 and now at 245 after the first chemotherapy. Had my second chemotherapy last Friday. Sending you love and hugs

Sheenagh

Sheenagh, I am so sorry that you have had this diagnosis. I remember how very, very hard I found it emotionally to start with ( and still do at times and no doubt will in the future). I had suicidal ideation and really could not see a way forward, I posted to this site whilst in a hole of despair and the ladies so helped me ( post is there if you want to read it). I fought the diagnosis, every day thinking I would wake up and imagining it had gone. I was furious and just lay in my darkened room My son eventually told me that until I accepted the diagnosis I wouldn't be able to move forward. This was brilliant, timely advice ( although I think I had to go through a process of massive anger to get to this stage). Gradually I got myself back. I am on citilapran ( mood stabilizer), do regular yoga for cancer when well enough ( free online at Triyoga), lovely long Epsom bath soaks, try to practice gratitude, go outside a lot, I am so kind to myself and try to be for others. Although I really hope that I can beat this disease for a long time I have found doing things such as knitting my husband, children and some family members blankets, writing lovely messages to people helps me a lot.

It is very hard, a constant emotional battle to stay positive and try to be happy and enjoy life whilst living with the uncertainty of cancer but I really hope that with time you get there. Many ladies on this site have lived with cancer as a chronic disease or have been NED for a long time and I very much hope that you will be one of them , sending lots of love, Sara xxxxxxxxxxxx

Hi Sassy,

Thank you for your support. Everybody has been so kind, supportive and helpful. I’m sending you lots of love and virtual hugs. Sheenagh xx

Hi Sheenag! Sorry you find yourself on this forum..we all wish we'd never heard of it but you will find so much support! Great that your ca125 has reduced so quickly. You will be surprised at how soonyou get used to the fact that you have cancer and just get on with it! Some people in this group were diagnosed 10+ years ago and are stll enjoying life. Ask any questions you need to and someone will be able to answer it; make use of any support you are offered and don't google. Good luck and keep in touch. X

Hi Sheenagh. The emotional side of OC is almost worse than the physical. I’m almost at three years from diagnosis as 3B hgs OC and I found frontline chemo quite difficult. I’ve since had one recurrence but am ned on a PARP inhibitor since April 2020. Yesterday I asked my oncologist if I should spend the money and time to get dental implants and she said yes: you’ve got a good few years of chewing ahead of you! Just try to take one step at a time and you will figure it all out. Xx

Irisisme profile image
Irisisme in reply to delia2

😂 made me laugh, “a good few years’ chewing”! Let’s hope we all have 👍😁

Sorry you are in this situation. It's hard to take in at first. I was convinced when I was first diagnosed in 2008 that I didn't have long to live! But none of us knows. Although I have had tough times, I have tried to take life a step at a time. All the best to you in your treatment. Di

Hi Sheenagh! Sending you best wishes and hugs from Downunder. I know it is an awful shock when you first get the diagnosis. It takes a little while to sink in. As my oncologist said to me, - we can't cure it but we can manage it. Once I got that into my head, my outlook changed. I know it is always in the back of your mind, but try to focus on the fact that there is often another step that you can take on the journey. You will find so much help and support in our group. xxx

Jill. 🦋🦋🦋

I wish I would have asked this question as soon as you did. For my first six treatments, I realized I was waiting to die or be cured. Well, guess what, neither happened. And through the support group, I realized I needed to get on with living. Cancer is a chronic disease, like diabetes or other diseases that you keep treating and learn to adjust to. I hope this helps you thinking differently than I did sooner.

I belong to this group and to Mayonconnect, anyone can join either, no matter where you live and what hospital you go to.

Connecting with others will help you

Bless you , great advice lots of love & kindness on here. Its such a shock to the system but once you get past that. You start to deal with your situation and we are all different seems likeyour responding very well to treatment please forget how long have l got. I keep buying myself treats and l make sure l enjoy them who can say how long we have they cant enjoy every day your going nowhere. Get the best treatment you can, have faith in your Doctor if you don't get 2nd Opinions nothing wrong with that lots on here have. Do whats best for you, ok you do feel a bit off whilst your on your treatment but it gets better . Just keep thinking what am l doing next week next month you get my point. Stay positive we can live with this. I for one am determined to fight it. So don't despair you can do it .sending love & hugs to everyone SheilaFxxx

It has become a manageable disease welcome to the site. Hugs from paris

SEckett profile image
SEckett in reply to Ruebacelle

Hi,

Thank you for reaching out to me from Paris. Sending you lots of hugs. Sheenagh

Welcome to our forum Sheenagh! Keep thinking positive and know that you have support from all of us. Sending a hug from Michigan, Donna ( USA)

Hi Sheenagh, my heart goes out to you. It’s a huge shock that often takes a long time to come to terms with. It is a k to not feel ok but please allow yourself the feelings you’re feeling. If you keep them in, they could just fester which, in the long run, wouldn't help. I was in a very similar situation to you in Feb 2018 ( I was 51 at the time - wasn’t turning 52 until Dec 2018). Didn’t think I was going to make it to 52. Was thinking about what sort of funeral I’d like & wouldn’t buy myself new clothes thinking it would be a waste.

I’m now 54 & in a much better place after getting counselling ( both individual & attended the Macmillan run HOPE support group). I also started taking Prozac in July 2019 - wished I’d got them from GP sooner. The initial few weeks of taking them I felt really flat ( & in some ways worse) but then I started feeling more myself.

I still get low times but go along with it.

One of the nurses who ran the afore mentioned HOPE support group said to me, “ Often people say stay positive & that will help you. Positivity isn’t always being optimistic but allowing yourself to feel the emotions you’re feeling & releasing them . “ This made me feel so much better about crying or feeling low.

You will feel better mentally in time, but as & when you’re ready. You’ve only just been diagnosed & it’s very early days.

Try to take one day ( or even hour) at a time.

Most importantly be kind to yourself - you’ve already been through a lot & it’s tough.

With much love Lynne xxx

Hi,

Thank you for your support, advice and kindness. Everything did happen so fast. One minute I’m getting up going to work, meeting up with my friends for a Costa before we start our shifts at the hospital and the next I’m off work with Ovarian Cancer and missing everything and everyone. Sending love and hugs. Sheenagh xx

Gemmyw profile image
Gemmyw in reply to SEckett

Hi Sheenagh,

I had a big problem with losing bits of my life to cancer. I'd lost the capable me, the self-sufficient and independent me, the me that took care of those around me as best she could. The me that was confident (mostly) and had fun. The me that was a capable lawyer instead of a cancer patient that struggled to follow even a single page of a relatively simple novel. The list felt endless.

Counselling really was a big help in dealing with those losses; (even if temporary) they need to be grieved xxxx

SEckett profile image
SEckett in reply to Gemmyw

Hi Gemmyw

Thank you for reaching out to me. I’m finding it hard to anything at the moment, even hanging the washing. I hope you are well and send you lots of love and hugs. Xx

Gemmyw profile image
Gemmyw in reply to SEckett

Hi Sheenagh,

I recognise that feeling very, very well. I have to break down any tasks I have to do into ridiculously tiny chunks. I'd attack hanging the washing by first agreeing with myself that I was going to stand up. Tick. Then walk to the washer. Tick. Then open the washer door and put the washing basket on the floor next to it. Tick. Tick.....you get the idea. You'll find a way, but many of us here will know exactly what you mean!

I'm ok thanks. It's my week off from chemo so I'm trying to do some of the jobs I've put off for far too long 😬. I have an insurance claim to submit for a night in hospital and need to dig out all my pension paperwork as I'm in the process of updating my will. Baby steps, broken down further into even smaller ones! xxxx

Big hugs. You’ll get through this. I forgot to mention I was also diagnosed stage 3 ( high grade serous). Xx

So glad to have read this post and replies. I was diagnosed with 3c ovarian cancer hgs in Dec 2019 . No symptoms apart from 10 years of IBS. and I was being investigated for gallstones and this was how it was found by accident. I was just 18months into getting over losing my my mum in 6 months flat due to inoperable vulva cancer which came on very suddenly and nothing could be done. My mum was a very fit and healthy 92 year old. I know it was a good age but it was a horrific way to go. I still have panic attacks just thinking about it.

When I was first diagnosed and I thought it might be the same type of cancer I was going to commit suicide rather than go through what she had to indure.When it was explained to me and I went straight into chemo, then covid got my de-bulking operation cancelled at the half way mark of my 6 chemo so I had operation when the 6 chemos had finished. So I got through it all and came out the other side.

Covid meant I couldn't see friends for such a long time. Then it all seems to have caught up with me. My blood count got down to 16. It started at 58. My first 3monthly check up it went up to 35, I'd just had 1st covid jab which had made me quite poorly so the rise was put down to that. Just had 2nd 3 monthly check up up & it's now 55. I did have a scan when it went up to 35 but nothing was showing. Now my oncologist says it's just watch & wait.

I'm finding this all so much harder to deal with. My mind has just got round to the thinking of I've got to learn to live with this. My husband has a terminal illness but he has high functioning Asperger's so he actually deals with it in a completely different way. He actually wants to die as he can't live his life in the way he wants to so he doesn't want to live at all. He doesn't do emotions or empathy so I'm finding things very difficult. It helped so much to read all your replies. I am taking medication to help with the stress of it all. It's good to get this out my head & down in writing, my head seems like it will explode some days with so much going on inside it. Thanks for this place to come to 🦋

OvacomeSupport profile image
OvacomeSupportAdministrator in reply to Euphori

Hi there Euphori

Thank you for your reply to Sheenagh’s post and for sharing your story.

I am really sorry to hear of the difficulties you have faced. Managing your own diagnosis alongside the loss of your mum, and your husband’s terminal illness sounds an all-encompassing experience. You describe the presence of overwhelming emotions, and I am very pleased that you have found this forum a supportive environment.

If you would like to discuss any of this further with a member of the Ovacome support team, there are a range of ways to get in touch. You can contact us directly through this forum, via our Support Line on 0800 008 7054 or 07503 682311, by email at support@ovacome.org.uk or via the Instant Chat function on our website. We are also available to talk by booking an individual video call if you may find that helpful too. All our services are available Monday – Friday, 10am – 5pm. Even if you do not have a particular query, we’re happy just to have a chat.

Many of our members express that speaking to others who have been through similar experiences has been beneficial for them. Alongside this friendly forum, Ovacome has a variety of support groups that provide a safe space to talk to other people in similar circumstances. You would be very welcome to join and there is more information about the events and support groups available on our website here: ovacome.org.uk/Pages/Events...

Best wishes

Annie

Ovacome Support

Hi Annie thank you for your speedy reply. Strange as it may seem it really helped to write it down in a mad moment. I'm not a person who opens up. I try to deal with things, I've always had to. Sometimes just lately I have moments when it just overwhelmes me. I won't to adjust to and move on but I always seem to hit a blank wall. I'm tired of propping myself and others up, I think the most difficult part is I'm trying to live on and my husband wants to die. He's so unemotional and sits endlessly waiting for the event to happen. Thank you again for the listening ear on this site

OvacomeSupport profile image
OvacomeSupportAdministrator in reply to Euphori

Hello again Euphori

Sometimes writing things down can be a cathartic experience. I’m sorry you’re having moments where you’re feeling overwhelmed.

That sounds a difficult terrain for you to navigate. Do you feel that you and your husband are able to access the support you need? Our support team would be happy to discuss this further, in a more confidential space, if you feel that may be beneficial for you.

Best wishes

Annie

Ovacome Support

My goodness Euphori, my heart goes out to you. You’re going through so much. Glad this group is helping & you’ve managed to express how you’re feeling in this group. Really hope you find the comfort & support you need to help you through this really tough time.

Take very good care of yourself please.

Sending hugs xx

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