Hello Ladies I was diagnosed with OC in December Stage 3 Level C and had a radical hysterectomy (I'm 57). I had my 1st chemo 10 days ago. Too be honest I'm still in shock...I never knew I was seriously ill, I had a pain on my right ovary which hurt when I jumped on my mini trampoline.... yes the trampoline was the alert to take me to the Doctors! After various tests and a scan I was told I had a tumour that was 8cm in diameter and suspected it was ovarian cancer. All this in a matter of weeks..... I had never heard of OC but have read so much on this nasty disease since. My emotions have taken me from a happy go lucky fun loving person to a complete and utter emotional wreck. I have never cried so much, felt so sad and so full of anger...it really is so over-whelming. I can't seem to escape from knowing I have cancer....it consumes my thoughts from the moment I wake up and when I go to bed...not that I sleep that much either. Also not having my ovaries and not producing oestrogen is also causing varying degrees of emotional upset. I'm looking at joining a support group and meet other ladies who have had OC or are going through OC and was recommended this website.
My question is how do you all cope? How do you feel? How do your family feel?
Love Michelle x
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You have joined a very special group of people here who will be very supportive ( not that anyone really wants to join).
It is a dreadful shock but you were fortunate to start treatment so quickly. There are local support and awareness networks. Whereabouts in the UK are you?
I'm in the south east.
Hope you get someone local to you: it really does help to talk even if can only be on-line.
Great to see how many replies you have got- it really helps doesn't it?
I'm in the Hastings area but know Guildford quite well as my son and daughter in law live there.
I went to the specialist in Brighton and am fortunately symptom free at the moment. I've bad asthma all week though after having had clear winter- could be worse though, couldn't it!!!
Yes it sure is.... I'm amazed how many stories and really don't feel so alone
I'm so pleased you are symptom free and can only just imagine the elation you feel. Is your asthma related to the chemo meds? I hope you're not struggling but yes it could be worse but we won't mention that!
No- the asthma is something separate. I am one of the 'lucky' ones not to have had chemo as it was a granulosa cell tumour which chemo would not have helped and they think they got it out completely. It's a bit of a sword of Damocles though as it can reoccur but hopefully not for a long while.
Hi Michelle...glad you found this site but sorry you needed to!
I was dx last summer with stage 3/4 and it has been a roller coaster as you describe. The initial panic and fear will subside...I found my way to this site and also attend a gynae cancer support group at my hospital which all helps. I try to concentrate on today and not think ahead too much. Going through chemo becomes like a full time job!
It does take time to get used to the new reality....find the support that works for you, ask us any questions you have...the ladies here have a wealth of experience. Most of all be kind to yourself! Much love and hugs to you. Lyndall
Thank you for replying so quickly! Yes agree about the joining bit!
Sorry to hear your diagnosis... how did you find out? The support groups sound a good idea...I've only just started to look into website/groups as needed to get my head round the diagnosis and as you say the new reality.
Love Michelle x
HI Michelle, I agree this diagnosis is a dreadful shock to get. You feel ill from the chemo and you also wish you never heard of the word Cancer. I would suggest ringing the Ovacome nurse on this site for help. Do try and find out if there is a Macmillan Centre in your hospital or nearby. I would be a private person but I found speaking to someone outside your family and friends really helped me. There is always some one on here to answer your questions as much as we can. Thinking of you
Hi Suzuki Thank you for your reply. I will make contact as you suggest and agree talking to someone outside of family/friends would be I guess a relief as I don't want to keep talking about cancer to them...if you understand.
I found that my friends didnt and still dont want to discuss it much, then again they have had brushes with Cancer in their families. My hubby thinks once I am up and about, that I am fine but that may not be the case. I have fought it a few times and its manageable so far. I found outside support great because I met lovely people who understood how I felt
I'm very sorry to hear your diagnosis but here you will feel much better and you will learn a lot about it .. Take it easy think that u will get better .. I have one more chemo to go and I willbe done .. I was diagnosed last year in August and not sure if I'm cancer free or not . But I'm just learning to live my life with no fear .. Best of luck to you
Hi Shqiperia...yes I need some positive thoughts...I am normally a very positive person but this as knocked me for six. Please let me know how your last chemo goes...learning to live life without fear is tough..thank you for replying, Michelle x
Sorry you have had to join us, however the members on this site are amazing and have helped me stay sane over the last three years.
When I was diagnosed in 2012 my youngest was 13, she was really upset but I think because after two operations and one bout of chemo all was good she kind of considered, as children do, that it was all over. I think a part of me did too. In 2015 I had a recurrence and she is really blase about it she thinks it'll be like last time, where I am totally freaking out because I know it's not. My eldest son was 27 at the time and he has taken it far worse this time. My husband (not their Dad), is a take it in his stride, when are you going back to work sort of way lol.
I found surgical menopause hard. Being told you can't have any more children even though you don't want any more upset me a lot, even though I was in my 40's. Worse when the district nurse sat on my bed and had a cry because she had an emergency hysterectomy and wanted more children, in her mid 30's, but not for cancer. I did wonder for a moment who was helping who :/
Having a good cry can help, I've done it a lot over the last few weeks. We are all here to help you, come on in the water's warm.
Hi Lily-Anne so many sad stories on here but all the way the fight is there to beat this disease. It is very hard telling your family, I'm the eldest of 5..the leader and nothing ever happens to big sis...until now...my family don't live near but thank goodness for Skype! I'm looking into support groups as I do feel for me I need to speak to women face to face. I also live alone which doesn't help matters either. I just live in dread how the chemo will affect me mentally and physically but one day at a time it will be.
Yes many tears have fallen and many more will follow on this dreadful journey. Thank you, Michelle x
Hi Michelle - if I'd known about this forum 4 years ago I could have written an identical message, even down to the size of the tumour! You're the same age and stage as I was when diagnosed and like you I was stunned, sad, fearful and tearful and telling my family was the hardest thing I have ever done. Telling my son, then aged 24, was the worst by far. But I'm still here and 4 years on we've all learned to live with it and it doesn't dominate our lives. It's not so scary any more and in fact it's been the impetus to take stock and make a few life changes, for the better I might add. I've learned such a lot along the way, including what's important to me in my life, have grasped opportunities I might in the past have put off to 'when I've got time' (Ie.probably never!) and feel that in some ways I've been given a second chance to make decisions which are better than those I might have taken otherwise, though obviously it wasn't how any of us would choose to get a wake up call. It really really won't always be this bad - not saying it will always be easy and that there won't be more down times, but they will pass.
Glad to hear that feeling like joining a support group and it might also help to get some counselling - is there something available at your hospital or a Maggie's Centre nearby where you and your family might find some help for example? We didn't use Maggie's but I know others who've really benefitted. I did however have a wonderful Macmillan nurse who helped me a lot with both practicalities and the emotional side. She would just listen to my fears for my family and just being able to offload to someone outside the family was enormously helpful. You're lucky that you've discovered this forum at an early stage - I'm sure you'll find it a huge support.
Hi Beth your reply is inspirational and made me smile. I'm so pleased for you and to hear how you manage, overcome and live your life.
I've now made contact to join a support group and should hear next week. I do have a MacMillan nurse that I seem to be forever crying down the phone too, she is lovely and very supportive.
Thank you again, Michelle x
Hi Michelle all the emotions you are feeling we've all been there, the ladies on this site have got lots of good advise and lots of tips to help you through chemo etc. It's hard going but you will get through it. I found it a huge support and lots of my questions answered to, wishing you all the best, take care of yourself xx
Thank you KMAllan....I don't feel so alone now I've read other ladies stories on hear...and thank you for replying. xxx
Hi Michelle
We all know just how you feel; the enormity of the shock. I was diagnosed Nov 2011 with stage 3C. I'd always been such a healthy person & life was good. I describe myself as a 2-Panadol a year person (if that). So how could I possibly have OC ??!! Tumour the size of a baby's head, the surgeon told me. Similar to you, it was the treadmill that seemed to bring on my symptoms. But I was diagnosed quickly & operated on. I've had excellent care from all the hospital staff and from family & friends. You learn to live with it; it becomes part of your identity. I belong to a support group of wonderful women (+ a few husbands). Some people wonder why I would want to go there & keep it all in the front of my mind - but we have a bond that is hard to describe.
You have a few nasty months ahead of you with chemo, but once over, you can pick up your life again and, as Beth said (above), it will make you a better person. The day will come when you'll think "what was the name of that drug I was on?".
My advice is "get over it & get on with it" but don't rush it - just when you're ready.
There are so many stories I've read on here since I joined and all inspirational and again bring a tear to read the strength and challenges as women we face.
Like you I agree with the support group and hope to find one local to me next week and so agree with your comments. The nasty months ahead do scare me but I do have my family and friendswho are with me on this journey and I will look back and think what was all that about. I do keep a sense of humour in this...at times hard but you have too!
Morning Michelle, Like everyone else here I can totally identify with how you're feeling right now. I know you won't believe this as I wouldn't have three years ago but you do adapt. Yes life will never be quite the same but you will discover a new normal. I recurred this time last year and completed six cycles in chemo in August. Chemo was tough and really messed with my head and for me that was when the tears came as up until then I had been in stiff upper lip mode. But then once chemo finished I brushed myself down, found my positive attitude and got on with life. I had a wobble and felt quite angry over Christmas for a couple of weeks so I distanced myself from someone who was really getting me down and I feel much better now. I know everything seems so bleak right now for you and your family but just keep putting one foot in front of the other and you will get there and we will all be with you every step of the way, take care Kerry xx
Dear Michelle, We all cope differently and you must not feel badly about your reactions because they are VERY real and must be met and dealt with before you can move on. The panic and fear will subside and you will find an inner strength that perhaps you didn't think you possessed. Focus on today, cherish each joy that it brings and fight those blahs. That's what I try to do. Also stay close be it physically or via phone email etc to positive people. I live thousands of miles away from my family and close friends who are based in the UK, Australia and Vietnam but Skype is marvellous as is FB for little chats. You will get through this. Stay strong. Take care. Love and hugs Jeanne Gray
My mum was diagnosed with stage 3c OC in October 2013. She's had various treatments since then, but overall since then there has been no significant progression of the disease and the docs are still managing it well.
Of course she felt the same as you when she was first diagnosed, but for the most part is able to maintain a great positive mental attitude, which she believes is a big part of why she is doing so well.
The important thing to stress is that nearly three years on and apart from the side effects of chemo she doesn't feel unwell. She lives a perfectly normal life and does everything she wants to do. She still works in a very demanding sales job and lives life to the fullest.
My point is don't be defined by the fact you have cancer. You define it, make it fit into your lifestyle and work around you.
Hope you are able to get over the shock soon and are able to enjoy a lovely summer (fingers crossed we get one).
I fully understand how you are feeling. I thought I was fit and well running around garden with grandchildren then wham admitted to hospital with perforated bowel having surgery and being told I had cancer. Took weeks for it to sink in with myself and family, but you have to rise above it get o with what treatment is advised and start to think positive This site has helped me loads, it will you to. I still have my quiet moments and think it,s all a nasty dream
Hi Michelle, I'm sorry you've had to find us but welcome to our club , the one that none of us wanted to be a member of.
Its still early days for you. You've gone through major surgery which in itself is tough enough to get over and now embarked on chemo. You've also been told your cancer is advanced. I remember exactly how you're fee!ing. Mine is stage 3b.
I have 2 grown up daughters and I felt it best to be honest with them from the start. I dont like secrecy, especially surrounding health issues, they need to be aware of family health history and to be quite frank there is enough secrecy in my husband's side of the family. Its like being attached to MI5 lol.
I found the hot flushes difficult at first but then a friend whose a GP told me to avoid all caffeine and try to drink Green Tea. It was tough at first but chemo helped in that transition as I couldn't stand the taste of normal tea. I now drink decaffeinated green tea and much prefer it. Plus, it has helped with the hot flushes.
I had my low points on chemo as I suffered quite badly from side effects. I cried, I said I would rather be dead than go through this but you do go through it and you come out of it a much stronger person.
My husband has always been quiet and I worried about him at first but a word in his brother's ear solved that. He was there for him to talk to.
My mantra was 'one day at a time'. That's how I faced it, its how I've coped. I was diagnosed in June 13 and I'm still here. You can do this girl. Be strong, be positive and above all, be kind to yourself.
Thank you for sharing your highs and lows with me...I found your words comforting.
I'll try the green tea and funnily enough I can drink tea in the morning but by the evening I just drink water as I don't like the taste. I've also noticed in the last 3 days especially after crying blowing my nose there's now blood on the tissue...again another side-effect from chemo coming to light. I've been constipated but finding drinking Laxido before I go to bed helps. I was taking x2 senna each night and found these aggravated my stomach as if I had an ulcer..not that I've had one! My MacMillan nurse told me to stop taking them. I'm also injecting with Fragmin every night as had a blood clot on my right lung after surgery, my poor thighs are so bruised and feel like a pin cushion.
What I have noticed is that having an epidural the tops of my legs are still numb... I'm told this might go away or stay for life! On a positive note these areas I use for the injections at times as can't feel them! lol
I have a couple of mantra's....I have cancer but it doesn't have me or Beat It the song by Michael Jackson which I play most days when I feel down...kind of helps!
It is hard telling your family and one by one my sisters and my mum have cried which then set me off...telling my son was awful (I only have one child) he doesn't speak to his father much and James and I are very close....it's strange when we're the ones giving the dreadful news how I've been the one comforting people...there's some resilience inside all of us...in a strange way it made me smile.
I have found some strength in me already which has amazed others in the fact that I will not be beaten. I speak to this 'alien' inside me daily...saying there's only room for one person in this body and that's me and it can basically go somewhere where the sun doesn't shine....well actually those aren't quite the words I use but you get the picture!
I remember well how people cried when I told the!m and I ended up comfortiing them. You will soon settle into the routine of clinic and chemo appointments. I'm about to start chemo again so went out today and purchased a coupke of pairs of tracksuit trousers to wear. Itzx sdo dfiffivult yo but to. Jeans etc when linked up to a drtip lol. Anything to make life easier.
So sorry you are finding it hard, I was diagnosed in August 2014, had my op,full hysterectomy,tumour removal (size of a melon) and 6 months of Carbo/taxol, finished March 2015 and am in remission.
I had loss of apetite and then my stomach swelled up, no sign previous to that that anything was wrong and always very healthy and strong.
I have found it very hard since as am always worried it will come back and am going to start going to a support group next month.
Having a hysterectomy has given me extreme mood swings and I know I am still in shock.Its not all doom and gloom I am lucky to be alive and take each day at a time, trying to be as useful as I can.
I have helped do up 2 buy to let properties, just about to do a third, look after my Grandson 2 days a week,go on as many holidays as I can and just get on with life.
I say all this to let you know however hard it gets, you need to focus on getting better and do what you want to do,when you want to do it.
Trouble is I look so healthy now, my friends and family tend to forget what a life changing thing this disease can be!
I wish you all the best and this site is a godsend for advice and support.
Don't live too far from you either, just round the M25 xx
I too was diagnosed with stage 3C advanced OC in September and had total hysterectomy in October. I am due to have my 4th chemo next Wed and so far the side effects have not been too bad, but I know it affects everyone differently and you have to find what works for you.
I think a support group would be very helpful and this forum also gives plenty of ideas for coping with different aspects of the illness. As other people have said, it is not something anybody wants to have to join but there are real benefits to being a member.
Do hope you will find a suitable support group locally or can meet someone face to face.
It does take a long time to adjust to having cancer but you will get there in your own good time and life will look good again.
Be kind to yourself, listen to your body and express your emotions when you need to.
Take good care of yourself and keep in touch with us on the forum
I'm so pleased you are finding the side effects not too bad...I've read some amazing stories on here which is so comforting to not feel alone on this arduous journey. It's all so cruel and coming to terms with it all when you just never knew you were ill.
I'm staying in touch and will post how I progress and when I join a support group.
Hi Michelle, like you I was diagnosed at stage 3c in 2013. I had no reason to suspect ovarian cancer, I didn't know anything about it. I had surgery for a radical hysterectomy too. What you are feeling is so normal. Don't be hard on yourself for having these feelings, and anger, and fear and crying all of the time. It's all normal for what has just happened. I can say that for me those feelings now are pretty much gone. Occasionally I will roll through them but mostly I am pretty up beat these days even though I am currently going through chemo for the second time. Because your normal personality before diagnosis was happy go lucky, I pray that you will be able to return to that somewhere down the road but right now everything is so new and scary. Let yourself grieve and have your melt downs but eventually sounds yourself with what makes you happy and smile again. A positive attitude will help you heal! This is a great group of ladies to ask questions, and a wealth of information and guidance. Surround yourself with everything positive to help you get through this and there is light at the end of this tunnel! Hang in there!
One thing about a life-threatening illness--any illness, not just OC--it affects your entire community of family and friends. Learning that my mom had IIIC OC, going through the chemo, hospitalizations, recovery, and now recurrence has rocked my world. It's like we "all" have this disease, but I cannot let her know my feelings, so there is a "gap" between the way we used to communicate so freely and how we communicate now. I am doing my best to be optimistic, supportive, and respectful, but then when I go home or hang up the phone I bawl like a baby. I don't want to make anyone feel bad. But this is my reality and there are so few people I can talk to about it.
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My mom has oc 3A low grade
Long term OC survivor
Living with OC
