As I read so many stories, and the changes, the pain, and depression many of you experience, do any of you have thoughts of taking control of your own destiny? I'm terrified of what my surgery may bring, and wonder if I can be strong like so many of you, and if I even want to be strong. I have the kindest husband , and two wonderful adult children that I don't want them to watch me slowly die, and remember me for the pain I may have suffered to the end. No where have I read that any of you want to give up, please help me to see what makes all of you so strong and determined. I'm not afraid of dying, it is the process.
Do you ever think of ending it?: As I read so... - My Ovacome
Do you ever think of ending it?
I am determined that when treatment stops being more tolerable than non-treatment I will take control and end it. I have discussed this with husband and children, who all say 'it is your decision'. Having said that I am 72 tomorrow, so completely different from the sadly many younger people on this site. I was diagnosed three years ago.
If the surgery you are facing is the standard debulking that suggests you are fairly new to the whole CA thing. It is worth giving it a go, just with the reservation that you reserve the right to stop when you choose. The surgery is unpleasant, but passes. Chemo affects everyone differently.
Although I have found the past three years difficult, there have been rays of sunshine which I would have been sad to miss. Hope that helps!
I think in my darkest moments usually in the middle of the night these thoughts were there. However, I’m a stroppy cow and was determined right from the start that this wasn’t going to beat me mentally or physically. That determination was hard to hang on to sometimes- but I put the brave face on and never let my family know those deepest thoughts.
It has taken time to come to terms with everything and there is light at the end of the tunnel.
I think we don’t share those thoughts because of the way it affects our nearest and dearest, but also because the words are too hard to see written down and shared even with our amazing real sisters.
You may find that having shared this you won’t feel quite so burdened.
I hope so.
Keep in touch and try and stay strong.
Sending you a hug
Joy xxx
I have always felt it was a choice I have but never got to the point of thinking about 'the how' and 'when'. I came to accept that this strong sense of vulnerability is the polar opposite of the intense joy I can also experience....like swinging from one side of the pendulum to the opposite side. I wrote a poem during this time about 'wondering how I would be remembered and as I wrote I realised that I was loved now and this was all I could ask of my life. But, knowing I could always make a choice, this poem helped me appreciate I'd be 'balanced' in my decision. Luckily for me, the outcome from the last operation and treatment has been unexpectedly so much better than the prognosis at the time.
What I hope for you is that your trust in yourself will guide you, with gentleness and kindness to yourself.
Finally, please, PLEASE ring Anna, at Ovacome as know she has listened to others experiencing these feelings.
Warm wishes for as good a day as possible. x
Hi I don't think I have ever thought about ending things, maybe because I nursed my mum for three weeks at home with bowel cancer and her pain was controlled and we were able to say all the things we wanted to to each other and other family members such as my Dad and my 2 brothers. I totally understand where you are at, I was so scared when I had my op, I was a gibbering mess. Here I am 12 years on (despite a prognosis of 2 years), admittedly 2 recurrences, but boy was the op worth it and the chemo. It's fear of the unknown, it's no walk in the park but then again it's not as bad as I imagined - take that from a wimp who practically cries going to the dentist for a check-up!. In the last 12 years I have welcomed 3 grandchildren, taken numerous holidays to the USA, got remarried .... if I had ended things look what I would have missed out on. Nobody knows what is around the corner, that 'you have 2 years' turned into nearly 12..... I have currently been NED for 5 years 8 months (albeit I am on a trial drug) and working 30 hours week, oh and running round after those grandchildren. On the other hand I could get hit by a bus tomorrow. You are in a place where your world has been rocked to it's foundation so your question is valid. If you continue to feel like you are it might be worth asking for counselling which believe me helps (I had some when my Dad was diagnosed with terminal Cancer and I was going through my first recurrence) Big hug xx Kathy xx
Hello
While I do think the choice should be available when it is clear that nothing else can be tried, I am not sure that is what you are really asking about?
How do the brave women on here become brave...is that right?
I can’t speak for anyone else but I found acceptance really helped. I was very scared of chemo and surgery but my experience was that they were both better than I assumed they would be.
Even on bad days I found a bit of peace looking outside into the garden or watching a good film.
So I don’t think there’s a special ingredient but many of us try to put one foot in front of the other and don’t look too far ahead xx
Had surgery,was very worried like all but recovered well ,was up walking two days after very slowly,take your time to recover, you have years to look forward too, for me some days are grey fourth line off chemo etc but I live for my children
& grandchildren and will never give in to this mother f....r disease ! grab your self a gin & tonic go with it ,like many on this site we have all walked in your shoes and yes its scary but you will be fine sending big hugs xxx
I don’t think about ending it, but I do often think about the end. I do NOT want a hideously slow decline, which puts my family through hell. I’d rather go out suddenly with something unpredictable, and be gone within hours or a couple of days, rather than a couple of months.
I wish we had the choice for assisted suicide in this country, because if the slow and drawn-out route seemed to be the one my body had chosen, I would sooner have the choice to say, “Enough!” and take matters into my own hands, having had the chance to say my goodbyes properly. However, as things stand, we don’t, and I’m putting all my faith in my local hospice to keep me well managed when the time comes.
So no, I don’t think about taking my own life, but like you, I am afraid of the process.
xxx
Hi there..Ovacome has a helpline. They’re very helpful and friendly. If you want to chat with someone, it might help if you call them. Xxx
No do not give up- live for today as you can't change the past and nobody knows what tomorrow holds.
Never thought about ending it, but when I was very ill, didn’t care if I lived or died.
I have been very lucky and have had nearly 5 years free, 2 beautiful grandkids who I adore, lovely holidays, my daughters wedding on the beach and my sons next year.
Just lovely days with the family and time on our boat with Hubbie.
They nearly wrote me off, but I am still here and I feel that surrounded by some lovely ladies that have lost their lives and fight with this s....y disease I would be doing them a disservice if I even thought about it.
The other ladies have spoken about the advice here, please speak to someone or get counselling, even a support group.
Every day is worth living,
Love,
Carole xx
I think we are all afraid of the process. Possible pain, probable indignity, definite finality. But that was the case before the cancer.
There are many things which make life worth living, and that is still the case even with cancer.
Get in touch with the helpline and talk about your fears. Xx
Having a good support system, a family that loves you and is willing to help when times get tough...
You need that. You need people willing to drop everything to accompany you to Chemo, to cook meals, bring you water, get you a subscription to Amazon Prime along with Netflix!
Friends and family are a necessity.
For your part, You just need to take one day at a time, do all your research, make some brave plans and submit to treatment.
Once you have had your first course of Chemo and your operation, you start to feel like a fighter.
This Ovacome forum is invaluable for advice and support.
It can really and truly help you in this strange time. It has helped all of us.
Hugs,
Laura
Thank you Laura for making me laugh. I'll be giggling about ' drop everything, cook meals, fetch water etc ' for a some time
Two of my neighbours popped in when I was post op day 5 and I had to brew up for them!
Lynn
x
Same here. I think some people think that the act of showing up is enough to make you feel better. Somehow their presence should miraculously improve everything. I had friends visiting me in hospital on day 3 after my radical hysterectomy, who really overstayed their welcome. I was very sick the next day.
Hm...I haven't sat down and thought about it as such, but I'm aware that it might one day come to that. I suspect I 'm too stubborn to give up too easily. I'll be on my last breath and still researching the latest flippin' diet /herb/miracle clinic. Someone will probably have to wrench the laptop from my dying grasp while I mutter 'just one more you-tube video! I'm sure I've cracked it!'
I haven't got a support team like Laura - I did all of it on my own. That worries me a bit because if I get very ill I'm concerned that there's no one who is bothered or around to help. But that's all what ifs and I don't think that's the way to think. If the end is looking painful then I'm putting my faith in a hospice, a lot of morphine, and a smuggled in bottle of gin. In the meantime I think distraction is a good ploy...make some plans - anything from a big holiday to just a little weekend out or even a nice meal and watching a film. I'd try not to think long term about the illness, just focus on getting through each little bit and building your strength up - you'll find it's all a lot more 'doable' than you expect.
Lynn
x
You made me laugh out loud - my copy of How to Starve Cancer arrived today, but I'm quite breathless at the moment (in theory I've got pleurisy, a follow on from the flu I had 3 weeks ago), so while I'm reading it, I'm thinking I'll be sitting here reading this and expiring at the same time, and will be found slumped over the table clutching the book, surrounded by post it notes, pen and pad ....😊 That's when and if anyone finds me, I'm on my own too... still better than going to hospital though!
Miriam
At the start of all this I had a few ‘what’s the point ‘ moments. I read lots of sad stories on here and elsewhere and didn’t see much of a future for myself outside hospitals and dreaded needles. But I’ve actually had some of the happiest times of my life since my diagnosis, I’m not going to say it’s a gift but I’ve been braver and more honest than any other time. I retired and I love it. I’ve been to Italy and Sicily and Austria and I’ve booked my first skiing holiday for next Christmas. My daughter is 12 now, which if I have to go seems better than 10 when I was first diagnosed, but I’ll hang on yet. You’ll find your strength just give it time.
Bless you sweetie.
I was diagnosed 4 years ago at stage 4 with very little hope. Op done, 4 regimes of chemo later and I’m still here. The op is something to get over, however, it is very doable and a bit like child birth, time does take the event away !!
I have a quality of life, fab friends and family and have discovered that knitting and all things crafty are actually very therapeutic. Along with the odd bottle of wine 🥰 I’m just about to book a few days away with my grandchildren, memories not only for me but more importantly for them, they will never forget me... I’m determined!!
I can understand why you are feeling the way you do, talking to someone (not family or friends) is a good experience, it gets everything into a bit more of a perspective. As it has already been suggested Anna at Overcome, also, if you have a local hospice, they are enormously helpful (well that’s what I have found)
As the ladies have said with their own experiences, they would have missed out on so much if they hadn’t gone this far... none of us know how this will end, I find digging out my positive pants, fresh air and a bit of retail therapy perks me up to carry on.
Sending lots of supportive cuddles
Di x 🌻
You are braver than you know. Posting that takes bravery.
My mum was dignified and brave with little fuss during her treatment, that takes a brave person. Remember great support is available.
No one really knows how to cope. Find one thing you love , music , reading, cooking etc and give that as much energy as you can.
You are stronger than you know .
Best wishes
Paul
Dear ocean16, thank you so much for writing, I can honestly say I could have written it myself! I have always felt exactly as you describe. I am not afraid of dying, having caught glimpses encased within glorious experiences of Love I know there is a wonderful place beyond this. However it is a huge mistake to take our own lives. I have had someone offer to go to Switzerland with me if that's what I wanted but it's not a route I would take. That doesn't mean to say that it doesn't cross my mind about finding an easy way out completely by accident and no fault of my own. Like you, it's the pain and suffering which is the real problem. I am now with my local palliative care team with all their various meds suggestions, but they are of course never there tweeking things when you really need them. With no chemo lined up for me due to being too weak to tolerate it and cancer advancing, I shall be turning to PADMA BASIC the Himalayan herbal remedy. Brought in by the Tibetians after the Chinese invasion and now made in Switzerland. I have nothing to lose now and of course unlike chemo it's not going to wreck my system. However I'm not recommending you people on here stop your chemo and try it or even use it alongside chemo, I'm just saying that for me it's the only thing left. Will keep you posted on this.
Often, I’ve been looking into dignatas but it’s rather expensive, plus my children would be devastated as they want me around for as long as possible. But I don’t want them to see me suffering towards the end and that be their final memories of me. We are caught between a rock and a hard place.
Oh yes, I certainly considered the serious matter of life and death in the early days of diagnosis. If I'm totally honest, I decided to have the surgery partially in hopes I'd not survive it (I'm Stage 4b), a quick exit seeming infinitely more attractive than things dragging on, so if I survived, well, then I would still be here, and then consider what to do next in terms of treatment. I remember coming round after surgery and thinking, oh, sod it, I'm still here, thanks very much universe, not, I can see you've got plans for me, regardless. I think I know how you feel - it all seems, well, too much trouble, to much effort, too much change, and the thought of what's to come is exhausting. And I will confess I nearly ran away from the hospital on the day of the surgery - I had to wait 5 hours for them to take me down, and barely managed to remain there till they finally came for me, and only by telling myself to get my big girl knickers on and behave did I manage to stay there.
Obviously, I did survive the surgery, and did so rather well, apparently, according to the medics, given my other co morbidities and my age (67 at the time). Then came the knotty business of whether to have chemo or not, and again, the issue of living or dying was a significant factor in that decision. I did see the Macmillan service psychologist (referred by the oncologist because he thought I might be depressed) during that time period, as well as doing what felt like endless research on my own cancer, alternative routes, the likely outcome, and on chemotherapy generally and for someone in my position particularly, while I made the oncologists wait for my decision. I also contacted the local Palliative Care Service and met with them to find out what's on offer in terms of end of life care. All that investigation, together with seeing the psychologist (who did not classify me as depressed at all, saying I was, in fact, merely struggling to come to terms with my own all too clear sighted realism) helped me to clarify my mind on exactly how I felt, and I ultimately decided to refuse chemo.
Then I thought about the slow decline, and was determined to stave off the cancer for as long as possible and get more time than those other 19 women with my (rare) cancer who all died very quickly after chemotherapy, mainly just out of sheer cussedness, a sort of I'll show you to the oncologist. I know, ridiculous isn't it, but it worked, I have had longer...
I'm with Yoshbosh on this though - I really wish assisted suicide was possible in this country, because I, too, would rather my son and loved ones did not have to watch me slowly failing, disappearing by inches, in and out of hospital with acute situations as things progress, and presumably, suffering on my way to the exit door. I really don't want to be constantly mucked about with by medical staff in hospital either, to be fair. I'm imagining the worst case scenario here, obviously, it may not be as bad as that, and maybe it'll be quick when things get sticky, but I have to say, I'd be an awful lot happier if I had a bottle of nembutal or something in the fridge to use when I decide its time. But I realise fully it won't be time till I'm beyond the point of no return, a solution in the fridge or not... and in the meantime, since the surgery, I've had the chance to speak to everyone I've ever known who's still around, clear up some stuff, both psychological and physical clutter, get organised in terms of funeral arrangements, etc, entirely redesign and replant a large garden (even with my huge hernia) and I live my life, betwixt and between, in that state of grace that occurs when you know and have accepted you're sort of in the lobby, near the exit door, and you can take the overview of your whole life, and see what was important and what was not. I wouldn't have missed this time, and am grateful to have had it - but I still hope to just suddenly go in the middle of digging a new flowerbed! UItimately, its surprising what a human being can get through, physically and emotionally; it's not unlike climbing a mountain, and when you get to the top, the view is amazing...
Don't panic about the surgery - yea, its scary and uncomfortable, but its okay, its going to be fine, you'll get through it - now is not the time to end it. In reality, I'm not sure there ever will be a time when I'll attempt to end it, although, being a control freak, the idea of having that final piece of autonomy, of control, is very attractive. And you just might be one of the ones who lives another ten years or more ... Do give Anna at Ovacome a call - I did that too when I was trying to decide about chemo... very calming, very helpful. And do ask to see the Macmillan psychologist if you're still struggling... and we're all here, offering support and a wealth of knowledge.
Miriam
Miriam - you write so brilliantly. I couldn't originally bring myself to answer in a way as I’m currently struggling with pain - all the time... and so want this to stop. But I’m hoping to start a clinical trial next week so perhaps that may turn things around. I just want to say I just agree a sudden end digging a flowerbed would be ideal. What a vision! It s a strong woman to deal with all this crap to be honest and yet - I do hope I get a little longer with lovely husband and daughter. You should in the meantime write a piece for a newspaper , perhaps that would surprise a lot of people into recognizing ovarian cancer. I was actually asked by a cancer patient recently what ovarian cancer was.
Well done anyway. X💕
Well thanks for the compliment! Perhaps the person who asked what ovarian cancer was didn't know what an ovary was either... I certainly never knew there were 30 different types of OC before I got it. I'd prefer never to have found out and not be in this situation, but there you go, I am, and we are, and that's that. I'm sending you a message separately...
Miriam
A difficult subject and I have to admit to researching the best way to put myself out of my misery. However I don’t think the people writing these articles knew much about it. No I am not seriously considering ending it but wanted to know about options. I am so happy to still be here to see the Spring flowers- now for the third time since my operation and horrendous diagnosis. I think all these thoughts match how well I am feeling at the time. Please don’t worry about the operation- I spent 12 days in hospital and felt so much better than before the op. I was depressed for a while but it passed.
This is hard to write but my mum died a month ago. She was 93 and probably had bowel cancer that had spread to her liver. Our GP sent a package of medication to keep at home in case it was needed. That same night she woke up in pain and I called 999. A paramedic arrived within the hour and administered the medication and she slept. The next day the district nurses came and put in a syringe driver. She died peacefully in her sleep a couple of days later. She didn’t suffer. So now I understand how end of life care works and am not so afraid. Meanwhile I am looking foward to the Summer!
When I was first told I had a large tumour they thought was cancer, they told me to expect a big operation & chemo. I was convinced I didn't have the courage to go through with all that. I was a wimp, & I was terrified. But I knew I didn't want to die, & I didn't want to leave my family behind. I had the surgery, even though I was really scared, & didn't want to give up without giving treatment a chance, however scared I was feeling, & got through it better than I expected. 11 years later, & I've had more surgery, 3 types of chemo, & am currently taking hormone blockers for my latest recurrence. There were 2 periods when I felt really depressed & weepy for a while, but stuck with it & came out the other side. I'm still a wimp, I don't consider myself brave at all. I'm currently feeling quite well, even with this recurrence. I have my next oncology appointment in 2 weeks, so am apprehensive about what they might have to tell me. I guess there is likely to come a time when I will become really unwell, & of course I don't look forward to that, & I'm sure it will be very difficult for myself & my family. But I normally don't dwell on what may or may not lie ahead sometime in the future. I've learned to aim to take life a step at a time. That's not bravery, it's survival, it's learning to cope with the situation. Sorry this is a long post. As someone else suggested, perhaps give Anna a ring at Ovacome. Also, it may be helpful to find out whether Macmillan do a Hope course in your area. A lot of people find it useful. Di
Hi ocean16,
I keep coming here for perspective. I don’t have ovarian cancer. I think you’re all very brave women. I have thought of ending my life a couple of times. First time I was just a scared 10 year old child who had just been a victim of attempted rape by 3 fellow ‘friends’ and couldn’t understand a thing of what was going on. It took me 40 years to know I have Asperger’s Syndrome and that it probably was the cause why I couldn’t have friends, fun and future. All I had was my Mum and I used to wait for her to come home from work every single day at 6 pm, dreading the possibility that she might have died.
I had a bad squint and my Mum didn’t have enough money for my operation. I had to wear thick glasses and was the joke of the classroom. I didn’t have boyfriends, didn’t hang out with the girls and had a very lonely life.
I used to think I didn’t end my life back then because it takes something I didn’t have: courage. Maybe all it takes is help.
Fast forward and I had managed pretty well, have become a biologist and a Prof of Genetics.
When perimenopause hit me in my late 30’s, I lost my job, my Mum, my only friend, a 10 year old female Labrador, and my partner who had been cheating on me for 2 years. I ran away, leaving house, and a relatively stable life and went back to my hometown to take care of my 90 year old father, with whom I have never had any empathy. That’s when I thought about ending my life again, when one day a little stray kitten crossed my way and nobody wanted him. I have always felt like an animal who nobody wanted so I empathised with him. I feel responsible for his wellbeing and that’s all that keeps me going. I have Ehlers-Danlos Syndrome, migraine and a pending diagnosis of fibromyalgia/chronic fatigue syndrome/chronic pain syndrome, whatever. The thing is I barely get out of bed, because I’m too fatigued. I am Brazilian and my country is in a social and economic turmoil, I have no job, no pension and my savings won’t last much longer.
Life can be tough in many ways. Your journey is yours only, nobody can feel your pain. I wish everyone could have a pill just in case life seems unbearable. Somehow that would make us think we are still in control of our own life, when nothing else seems to be. And I suspect that there would be less suicide attempts if that choice was available, just because you would have a choice.
I also suspect your brain will produce tiny chemicals that will allow you to keep going because that’s what evolution has selected over billion years, self preservation. You will find strength to cope with whatever comes your way, because when you realise you can’t do anything about it, you will just keep living. Do whatever it takes to ease your pain and suffering, don’t worry about your family, they will cope with the process if they feel you’re accepting your fate but keep fighting.
This forum is literally a life saver, and while there’s life there’s hope. Death is out there for all of us. Life is the ultimate challenge.
Sorry for venting. Big hug and all the luck in the world 💕
Well said chinchi, you are obviously here to provide warm words of wisdom and support to those in need. The world would be that much less without people like you. It always pays to see the bigger picture - the one that isn't always obvious to us when we are feeling down.
Maureen - X
Brilliant response and you're absolutely right - it ain't dying that's the problem, its living that's difficult. And yet, to some extent, its the difficulties interspersed with good stuff that give meaning to life... I wish you all good things.
Miriam
Tomorrow is my surgery, after reading all of your response I think I can do this. Each and everyone of you has expressed your feelings beautifully. I know I have much to live for, and you have given me hope that I can have a future with happiness again.
Thank you for letting me vent, and I am taking your advice and will be seeing a therapist after the surgery.
I hope to write after the surgery, and be more positive.... thanks to all you supportive ladies.
The stress will ease - there's a limit to how much you can worry and its a bit like hunger- there comes a point when you move past it. I was on my own but found the other patients on the ward were great or in the chemo unit or in here. I really think this forum is a life saver because you know everyone in here understands you.
You've got this Looking forward to you coming back from surgery and telling us it's going.
Lynn
x
Thank you for raising this difficult subject - it’s one I’ve come close to posting about many times but pulled back as it’s a highly emotive one - I’ve often thought about ending it since diagnosis and how I’d rather not die increment by increment witnessed by my grieving family - being dead does not strike the same fear as the thought of the dying process and although I watched the palliative care team ease my MIL’s cancer dying , it is the time before that which scares me the most - the living with the knowledge that the days are diminishing and the fear and anxiety already seem intolerable and I’m hopefully a long way from them yet - I don’t know what the answer to that is - I support assisted dying at a time of my choosing but doubt that will be legalised in my lifetime in U.K. but the thought of travelling far from the things I love to die seems impossible and cruel beyond belief. I suspect as the time approaches I will come up with a plan to remove myself at a time that seems fitting - my memory of my MIL is mostly of that last week and that isn’t how I want my family to remember me.
I think these things need to be spoken about more openly and honestly as I’ve often felt like an alien even amongst other cancer sufferers as there is so much talk about being positive and pursuing every last treatment - we all need hope of course but sometimes that hope may just be to make a good ending at a time of our own choosing x
Thank you for responding, I was feeling all alone in my anxiety ridden thoughts of what the the future may look like for me , and how I am going to deal with the pain and suffering towards the end. I'm fortunate that I live in N.J. ( U.S) and that a law was JUST passed for ending life when there are 6 months or less. It is comforting to know that I have that option.
Thank you for being so open and honest. x
I realise I didn’t address the learning to be brave bit directly - I think a lot of is a protective front that we develop post diagnosis just to get us through it all - I’m always laughing and fun in public but often have a sobbing meltdown at home - it isn’t bravery as much as hopeful pragmatism - I don’t really have the option to step off the carousel of endless scans and follow ups if I want to have more time so I just keep going and having a rant and weep when I need to - despite everything there have been moments of absolute bliss since diagnosis and joy can be found where and when you least expect it x
I’ve been very moved by the writing of so many of you, voicing many of the fears and feelings I have since recurrence in 2016. I think it’s sad that it is still so difficult to talk openly about death and dying, not just us whose illness has concentrated our minds but society in general. We talk about everything else for heavens sake!! Thank you all for your honesty and openness. We are very lucky to have each other here. With love Jo 🌺🌼🌸🌻🌹
I just want to add two things to this thread - first a thank you to Ocean16 for introducing this subject - I'm sick to death of being told I'm 'morbid' or 'negative' and I 'shouldn't talk about these things' but instead 'remain positive and upbeat' when I dare to talk about, for instance, funeral arrangements, or make jokes like if the surgical support department takes much longer, they won't be making me a hernia support, they'll be making a shroud instead...
Second, on bravery - I had a friend who got breast cancer 15 years ago, and she was exasperated by people telling her how brave she was. As she so rightly said, its not about being brave, its about putting one foot in front of the other and treading the path you've been presented with, usually with intense trepidation and deep reluctance, but doing it anyway, because there was no choice but do so. It takes courage to end it, and it takes courage to carry on, is all I know... we're all between a rock and a hard place, aren't we.
Hoping to hear how your surgery went in a few days, Ocean 16... thinking of you.
Miriam