Hello all. I was told, gently, on July 23rd, that the ovarian cancer has returned despite carbo and pacliltaxol and debulking surgery with total hysterectomy including my apendix and part of my liver.
I wasn't in remission a year and the cancer is back, with friends. It's attacking my bowel, lymph nodes, omental area despite the removal of my oventum, and the peritoneum.
I was told it's incurable and they can't operate as the cancer is too fragmented. They're treating me with carboplatin and Caelyx (forgive if spelling wrong).
The chemo is to keep me comfortable by shrinking the tumours as best as possible. I asked aged 51, if i would reach 60. Again very gently, i was told that it was unlikely. After initial shock and a few tears, I've accepted it. I'll have the treatment because i feel so much discomfort and pain but I'm not going to fight as such. What will be will be.
However, despite lovely friends whom i see occasionally and my heartbroken elderly Mum whose up north, living alone i am on my own most of the time. I can no longer work obviously.
Surely, it's not good for me to be on my own so much? Thank God for my 2 beautiful Cats, my world, but they can't get me a cup of tea or pop to the shop.
I feel so alone I'm starting to question having treatment for long, at all.
I feel ok about the cancer, just hating dealing with it so alone. 😪 Xx
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TudorPurr68
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I'm so sorry to read this, TudorPurr, and I empathise so much.
I'm not completely in the system yet, but I'm sure there must be someone to point you in the direction of support groups that meet up locally. There might also be visiting services, although I know it won't be that many hours in a day.
Is there an opportunity to get involved with a local cat charity? Not to do anything, but just find friends and talk about things other than cancer and treatment. It might also help if you know your cats will be going to a wonderful home when the time comes that you worry you can't look after them as you wish.
I am so sorry to hear this TudorPurr, this is such a dreadful disease. None of us know how much time we have left . Is there a maggies centre near you , they are wonderful, they also have councillors there and are very supportive, even if you just want to pop in for a cup of tea and a chat.
Hi, Im sorry to read yr news. Have you considered a second opinion or maybe a trial. I have had 2 recurrences and despite being told at the age of 48 I only had a couple of years I am now in my 12th year having participated in. 3 trials. As for the being alone have you contacted Macmillan to see what is available locally. When going through treatment I attended our local hospice once a week and a local cancer drop in centre. Maybe give the Ovacome helpline a call to see if they have any ideas. Hopefully there is something out there for you . Please let us know how you get on. Sending you a gentle hug, Kathy xx
Hello Katmal. I'm not intetested in trials. Thanks fot the other advice however. I just don't understand why I'm not seeing more of the friends i have. Xx
I think you may need to reach out to your friends.
I am sure they all want to help, but don’t Know how to approach you and are afraid of intruding on your life.
I was lucky, because my sister was able to fly over from the states to help me through the first part of my sickness and to teach my husband and daughter how to care for me, as I was too ill at the beginning of treatment to manage anything myself.
I was also too ill to see my friends and I kept them away, for months, I see now foolishly, for when I felt better I let them back into my life and they have been extremely supportive.
I think you need to invite them back as I did.
You will be surprised at how much they want to help.
Do you have any other family?
My family lives 6000 miles away, but my illness has brought us closer together.
I think you need to let people in. Let them see that you are vulnerable but willing to fight.
By the way, Carbo/Caelyx doesn’t have to be too disabling. You get to keep your new hair and you usually only have to lay low, baby yourself and watch Netflix for the first week, after that, you get almost 3 good weeks!
It can destroy the cancer, too and often does.
Don’t let your gentle Oncologist make you pessimistic. You are YOUNG! You can fight this thing and live happily with your beloved cats.
And you can get involved with worthwhile animal charities, too.
Hello Lindaura. I did all that with my friends last year, they know the situation. I can't keep reaching out. Apart from my elderly mother i have no other family. My oncologist hasn't suggested i give up, she just put me in the loop.
You're right about the carbo/caelyx mix. Some nausea but otherwise nothing much. I love my 'chemo' hair too, it's never been so thick and wavy, fabulous. I have the same style that Princess Diana had at one point and the silver colour is beautiful.
I just spend too much time alone and therefore dwell on things.
This is such a heartbreaking story TudorPurr I can hardly bear to read it. I found some of my longest standing friends disappeared after a similar diagnosis to yours. You can find new friends, maybe in a similar situation. Friends that have stories of hope. You can find help and companionship from McMillan. You’re so young you deserve some enjoyment and something to distract you from this dreadful disease.
Hello... I can only admire your strength and honesty in facing up to all this. But you are right to think about more support. When I was going through treatment I spoke to my local hospice who run weekly social groups because they know how isolating it can be . There must be some practical help locally too. Also (others will have more information) but you can go and stay at the Penny Brohn centre which is all about living well with your disease and brings people together (not sure cats are welcome!). I hope you find some like minded people who can offer support whatever you do on the treatment front xx
This is great advice. You can go there for the day if you don’t want to stay, But going there for 2 nights changed my life at that time. It’s an incredible place and an amazing privilege to stay in such a lovely retreat. Do look into it xx
I finished my first line treatment in November 2017 and by jan 2018 was not in a good place. Although I have a husband and son, they got on with their lives at work etc, while mine had just fallen apart. I reached out to our local McMillan centre who were excellent. They arranged counselling and got me to join in with various activities. It did help, I only hope there is something near you that can do the same. At the end of the day, however many people we have round us, I still find this a very lonely place to be too. Reach out to all of us here, we can relate to how you are feeling. Big hugs x x
Thank you dearly Eriksendi, your words are so true. Perhaps our friends find it hard knowing what to say etc. I'm different, I'd know how to comfort but we're all different. Oh dear, poor us Xx
Hello TudorPurr, am so sorry to hear your news. I live alone too, but with only one cat. I had wonderful support from my friends whilst I was having my initial treatment, surgery and chemo especially as there were a number of hiccups along the way. Since then I see friends but less frequently perhaps and I wonder if they see me as much better than before, despite being in watch and wait, as still have a couple of persistent inoperable lymph nodes. Think what I'm trying to say is that friends can react in unexpected ways. The ideas the others have suggested about getting some support is particularly helpful for those of us who live alone as our cats can't answer back even if we let off steam to them! I wonder if you live near anyone in this group? I'm in East Kent, but guess you might be further away
You’re are wonderfully brave and accepting of your lot. I really admire that.
Is there any possibility that you could move to live near your mum or that she could move in with you?
Would you consider telling your friends that you’d love more company to help you through?
I also live alone. I gave up my job and moved to live near two of my sisters after my first recurrence. It’s my way of ensuring that I have company & support close by.
You will definitely get support from some of those organisations, if you contact them and explain.
It is hard to accept the diagnosis but harder to feel ok if you are disappointed in your friends. I was surprised that three people I felt were very close have disappeared and almost taken my diagnosis as an indication to get on with their lives. But I am lucky I do feel able to meet up with other acquaintances and make new friends albeit with different expectations now.
The cats rarely disappoint!
It’s a hell of a learning experience and some people are just not equipped to be loyal or supportive. Some others can surprise you though. It can bring the best out in them.
If there is a hospice anywhere near you they may have outreach people who can be very helpful. I have found a cancer support group that I may visit too.
I keep on thinking about using this time to make a difference in ways I wouldn’t have had the confidence to do before, putting my head above the parapet on social media and engaging with twits. Nothing to lose! This could be the most meaningful part of our lives if we decide it can be and have some energy. I’m selling some of my work to raise funds for research too which makes me feel I have a purpose still.
I do wish you the very best and I do admire your single mindedness and resolution.
Alex, you speak as i think, thank you. I have been disappointed by a few folk but there you are. One in particular is wonderful and her partner is also sick with CLL.
I've given advice on here and yet still occasionally need it also, don't we all.
My Cats are comfort and company and i worship their every purr.
I could do with more human intervention but i suppose I'm luckier than many. God Bless Xx
You sound like it’s a hard time, which is so normal and there are so many women here who can help you. My first suggestion is to get a second opinion as all medical opinions will vary. Incurable does not mean unmanageable these days. There’s a big difference. It sounds like your cats are a wonderful comfort, but it also sounds to me like you might need to reach out to your friends a bit more and ask for help and some chats or some company? This forum will help, but depending on where you live, there are great support groups around. Are you on Facebook? I met some lovely local ladies ( albeit with breast cancer) but who are so caring and bring so much love and even humour into my new life. You just need to reach out. Love Nicky xx
I know Nicky, I'm a senior staff nurse myself, i know incurable isn't quite the end, not yet anyway, but it does shorten life and being realistic is being me.
I love everyone's passion on this site, i feel i have been helped by each of you so I'm glad i put this post. It's through facebook that i found this site 😊
I've given advice too, just shows doesn't it. Giving advice is always easier than taking it. God Bless Xx
I, too , would recommend a second opinion. I had very successful debulking but the cancer grew back substantially during frontline chemo including in my liver. I was offered caelyx or a phase 2 trial. I decided to get a second opinion with a top oncologist in london and have bern on a trial for the last 20 months and have been stable so far.
Good morning Neona. I’m sitting here waiting for the results from a recent CT scan and I’m petrified. The ultrasound showed a mass on my liver so don’t know the outcome yet. I have been warned it’s inevitable cancer has recurred. I would of course try anything to live a little longer and have been researching (like many of us). I will just have to wait with baited breath for the dreaded phone call.
If you need any advice Angela, please drop me a line. I really hope today goes as well as it can do for you. I know it’s scary.. but there are options out there for you xx Nicky
the appointment with my oncologist was as expected. The big C has recurred.
I will be starting chemo, carboplatin/caelyx on September 2. The 5cm tumour is near my liver ( not in my liver ) another tumour is in the peritoneum and some cancer across the top of my peritoneum but not in the lymph nodes, liver or kidneys. The chemo may or may not work but if not they'll try something else. I'm a little shell shocked having been told again that the cancer will recur. Oliparib was mentioned but not yet. Avastin was a definite no no but I expect there's a good reason for that. Presently I'm feeling very down and apprehensive. I suppose we all feel similar when we're told they cannot stop the cancer only control it. I should be thankful for small mercies and just hope for a few more months after the chemo.
the appointment with the oncologist went as expected. The big C has recurred. A 5cm tumour is near my liver (not in my liver) There is a 2cm tumour in the left side of my peritoneum and some cancer across the top of my peritoneum but not in my kidneys, liver or lymph nodes. I will be starting chemo Carboplatin/caelyx on Monday September 2nd. Presently I'm feeling very down and apprehensive having been told, once more, that the cancer will recur and cannot be stopped only controlled. We must al feel exactly the same. They will try something else if this doesn't work apparently. Oliparib was mentioned but not yet. Avastin was a definite no no (for good reason I suppose)
I should be thankful for small mercies I know and just hope that the chemo will shrink the latest tumours and give me a few more months after treatment.
I hope you're having a better week and finding some new friends on this site. Even writing down how you feel can help.
Hi. I really sympathise as I live on my own too, and found going through chemo alone quite hard. I have children but they work and have their own families although they did call or drop in daily.
My hospital support group closed, and I looked around for somewhere to meet people and can really recommend U3A, who have become the mainstay of my social life. There will be a group local to you, and there are a huge variety of activities you can involve yourself in, and meet like minded people. I go to, medieval history, poetry, mindfulness and learning to play the recorder. I have in the past gone to a lunch group, and outings on a bus pass!
People don't necessarily know about my cancer, and as we are all retired, most seem to have something that they are dealing with.
There is company out there, but it has to be searched out. Please stay in touch with this group, as the support is phenomenal. X
I'm sorry for the hand you've been dealt. I to am a cancer(survivor) but, I don't trust cancer, it is a terrible, horrible disease. My heart goes out to you. All we can really do is try to stay busy, it can sometimes help with the depression. My name is Fran, my email is frankhelokian@gmail.com, if you ever need to talk. Prayers for you.
Bless you Fran, I'm busy when I'm up to it. My e addy is
tudorjayne1509@gmail.com Xx
Hi TudorPurr. I too have lost contact with quite a few friends but I blame myself for that as I've let the relationships lapse. I have support from family, so I haven't put in enough effort to friends I had so much in common with, but now don't have the time or enthusiasm for our shared interest. Also, I know that they fear the worst for me and dread what they'll have to say if the worst is confirmed.
I agree with above that you're too young (I'm 73). I think you're probably in a rut and have lost your fighting spirit. When my OC returned, I was told, like you, that it was now inoperable and terminal but it wasn't untreatable. My onc said I probably had 2 years or so. So I was back on the chemo :carbo/caelyx along with avastin. That was 5 years ago and I'm still fit and well - I don't FEEL like a person with a terminal disease. In a couple of weeks I'll be boarding a plane to visit our daughter, her husband and our first grandchild in New York (that is as long as Hong Kong airport has settled down).
Hi TudorPurr I would reccomend getting yourself up to the docs and let them know how you are feeling. It sounds to me as though you have a touch of depression and anxiety, understandably, and there is therapy out there that can help, without the need for meds(although these can work as well). I completely understand where you are coming from, but it's about adjusting to the NEW normal, whatever that may be. Sometimes people without cancer don't know how to respond to those of us with it, as it brings up their own mortality, and they don't know what to do with that.
Be kind to yourself, and try to find some mindfulness either on the web, or from a book, it will help you to enjoy the now, and not the anticipation for the future.
Take care, and maybe ring the ovacome helpline for some support?
You have been given a lot of really great advice . When I had my first recurrence I felt like it was not worth going on, however in the end I sought counselling. You need to do this. The majority of us have been told it is incurable, however you will see from all of the stories on this site, that nobody can tell you exactly how long you will have. It is individual. I have now been diagnosed with my second recurrence, however there are still treatment options. I see they are offering Carboplatin for you, so you must still be platinum tolerant which is good. Ovarian cancer is treated as a chronic disease, and this is how I choose to think about it. Of course our time will be shorter than it would have been, but while there is life there is hope. I certainly will not be "throwing in the towel" until there are no more options.
In terms of friends, I kept most of mine away when ai went through first line, as I felt so unwell, however I have had several who persevered despite me, and I am so glad I let them back in. I also have ‘friends’ I rarely if ever heard from, but people respond to this type of illness differently. You need to seek out the friends who have shown they would like to be part of your journey and rebuild those relationships, moving on from the others.
I am sorry you feel so alone. Even with friends and family this can be a solo journey, with the only ones who really understand being the lovely sisterhood on sites such as this, or cancer support groups. Please seek help. Kind Regards Therese
Tarbon, hello. Yes the advice has been powerful. Of course we're all individuals with experiences and journeys of our own. However, it's not all about advice. Comfort too has it's place and I've had much and varied advice but now yearn for more comfort.
There is a difference between advice and comfort. The 'There there' factor is often all it takes, not just wisdom and experience, which good, can be harsh.
Are there any cancer support centres locally to you? I have 2 near me and they run holistic treatments, support groups, craft groups, counselling etc. It’s a wonderful way to meet people who are going through similar and understand the feelings and emotions that we go through which is sometimes easier than talking to a friend or relative. The worst thing is feeling alone through this when there isn’t a need to. Sending you love ❤️
Hi. I’m so sorry you are dealing with this situation and dealing with it on your own. I hope you can find counseling and a support group maybe through hospice or your treatment center? I’m sending warm and caring vibes your way.💕
I’ve looked a bit up for you and there’s a really good cancer support centre right near you- The Nightingale Cancer Support Centre. Can you get there for someone to talk to and to connect with?
This looks like an incredible to tap into. I’d have welcomed something like near me.
I could have written a lot of your post, albeit with 1 dog rather than 2 kitties. I was diagnosed in June and my supposed soulmate disappeared, leaving me feeling lonelier than ever before.
I've a few friends, but like you, not much support from family or otherwise. Sometimes we'd just like a text message saying "thinking of you, xx".
It is MUCH easier to give out advice than take it. I find it easier to comfort others than comfort myself.
It's good you've got the cats and are having counselling. Living alone and dealing with cancer is no joke, but at least we get the whole bed to ourselves and don't have to pick up someone else's stinky socks!
I've got the big debulking surgery in 4 days and I know that recovery is going to be rough. My sweet little dog has to go to her dogsitter for 2 weeks becaui won't be able to bend down to the food bowl, much less take her on a long walk. Cats were a very smart choice on that front.
Once I'm up and about after my surgery, i'd love to meet for a coffee. I'm in Hackney, east London, so not a million miles away.
Hi TudorPurr.So sorry to hear your story.Remember we are all individuals and who can say how long we will be on this earth.Ive spoken to women who have advanced stage four O.C,incurable and inoperable,who were diagnosed in 2007, and still here.I was diagnose advanced stage four sept 2014,given 3 months ,yet still here.Your local Hospice and Mc Millin will be able to offer support both physically and emotionally.Maybe there's a support group in your area.You will have some company and care arranged for you ,all we need is to be enveloped with kindness and care at this time.Youve taken the first step already by voicing it on this forum.sending you all my best wishes xx
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Help I think I'm alone 
Can Chemo alone keep you stable?
My shadow walks alone`
Why do I feel like this?
Trying not to feel depressed
