New Way of Life

Wonder if any of you feel as I do?

After having amazing treatment via our N.H.S and still surving at stage 4 and making the best of life and being told how brave I am and how well I look, still find it hard that I will no longer have the peace of mind that I had prior to my cancer diagnosis.

Life is now a suspended sentence going from nextscan to the next, sitting in waiting rooms forever hopeful, not knowing what's to come, my next scan is 7 weeks away, so holidays to book etc, but still lurking in the back of my mind is the big C. No one can understand the totally helpless feeling, for once in our lives we are not in control.

I am mostly an upbeat happy person, but at a relatively young age of 68 find it hard to accept this new way of life.

Sorry to be depressing but wandered if others felt the same?

Jackie O xx

37 Replies

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  • Hi Jackie,

    I can understand how you feel. Although originally diagnosed with ovarian cancer (that's why I joined this site) I now find that I have stage 4 cervical cancer, not a good outlook. I am 53 and am still on chemo.

    All I would say is that the future is not certain for anyone, no one knows how much longer they have on this earth. Plenty of people walk out of their front door in the morning and never return. When I turn on the news I count myself lucky, with all the tragedies going on in the world.

    I know it's difficult but just try to enjoy the present and take each day as it comes they are all a blessing.

    Helen X

  • Hi Jackie .. I too can understand Jackie's feelings. Every day is a blessing, I know. Still, living with this rather unfriendly visitor is tough. I cope with it by distracting myself. When I mull over it, it does no good and sends me into a right spin. Love to both you and Jackie. Xxxx

  • I know exactly how you feel I am the same, this is my second round of chemo after being clear for 14 months and having blood tests and scans every 3 months was told in April my oc was back. I see my onc, later today after having a PET scan and finished 6 chemo sessions, I am hoping all will be well, although the thoughts of it recurring are always in my mind, I think I am going to have to accept that my life will never return to the way it was, and therefor make the most of good times while I can. The first thing we are going to do if I get the all clear is go on holiday. I am 71 so close to your age, I have lots to see and do and I am not going to let this horrible thing stop me!! take care and think positive! xx Jeanette.

  • I completely know where you are coming from. I'm 38, and I hope to live a long and happy life without any recurrences of OC (or any type of 'C'), but I will never have not had cancer, and that's hard for other people to understand. I hear, "You're doing so well!" and "You look great!" all the time, and all I can do is smile nervously and thank them for the compliment. Inside, I am keeping everything crossed that I stay well for a very long time.

    I'm really trying to not worry about the future and concentrate on getting my kids back to school, booking a holiday for half-term, tentatively making plans for my 40th birthday next year...but I don't think the hyper-vigilance, fear of scan results and tumour markers will ever go away.

  • Hi, Jackie, I completely understand where you're coming from. When I recurred in Spring of last year with implants all over my abdomen I was told I would now have to treat it as a chronic disease and that took some getting used to. I've found that making plans and focusing on stuff and really help. I had a massive birthday party for my 50th at the end of last year and all the planning for that distracted me and once that was over I focused on the house and hubby and I did some decorating, then I planned a family holiday to Devon (we had a wonderful time) and last week hubby agreed to us having a dog. The kids have wanted one for years (they adore their pet Guinea pigs who are spoilt rotten) so they have had some experience of looking after animals. I know a dog is a big commitment but I've yearned for one myself for a few months now (always been put off before because I'm a bit house proud) but then I realised I was being selfish, who am I to say my kids can't experience having a dog just because I'm worried about muddy paws and dog doo in the garden. They have been through a lot these last few years and I am extremely proud of how they've turned out so we decided to go for it. I can't beliveve how excited I am about our new arrival (we should be getting him in the 20th October). SInce making the decision apart from having two very excited boys it's given me something else to focus on and this shitty disease isn't at the forefront of my mind like it has been the last few weeks. I suppose what I'm saying is, carry on with life, don't let this disease get in the way any more than it has to, make plans, have fun and be spontaneous. Kerry xx

  • Wow! What breed is he? We have a cocker spaniel who we got nine years ago and have never regretted it. Neither of us have ever had a dog before, so the fact he's not the best behaved dog in the world is our fault, not his. After my chemo started, I loved taking him out, every day, even through the few bad days. It made me laugh that I was hiding behind trees with nappy bags and the other paraphernalia of diarrhoea, when he had no such inhibitions.....

    He will become a much loved member of the family and if he sheds a few hairs and someone has to vacuum more frequently, and has little if any table manners (they are such messy eaters) is it such a big deal? No.....and your boys will love him to bits. Good luck for you and your family, such an exciting time.

  • Animals are food for the soul xx

  • He's a cockapoo and soooo cute. X

  • Your OvaCome name has already prepared you for your new furbaby's arrival!! Doo doo

  • HA, ha, can't even remember why I picked such a silly name xx

  • Hi Jackie, I'm a year older than you and recently diagnosed with stage 3b OC. I hope that sooner or later I will be able to have some thoughts which are not concentrated on my cancer and it's treatment. At the moment it intrudes into everything. I am starting chemo tomorrow. I have decided at the moment that I will go through with the first set, but if it reoccurs I may well decide to give in to it and fade away. Of course, that probably won't seem such a good idea when it happens.

    One of my biggest wobbles came as we drove away from a scan, a few weeks ago, and I was suddenly hit with the thought that this was what life would be like for ever - a constant round of hospital appointments and procedures. Since then I have been incredibly grateful to the NHS for giving me the chance to have them.

    It all looks a bit bleak at the moment, but others manage to be positive, so I guess we can too!

    Rachael x

  • All the best for tomorrow, Rachael - thinking of you.

  • How you feel, Jackie, is how we all feel - living with this is full of inconsistencies, mixed messages etc - think positive but prepare for recurrence, for example! Mostly I do well if I distract myself with normal living, but the doom feelings creep i and I breathe deeply and try to accept them as normal. It took a while to dawn on me that things wouldn't be the same again but yes, that's how it is. A thought that sometimes helps me is that before I got cancer I was afraid of cancer - so no change there really, except I've shown I can handle some adversity. As Rachael points out, you can (bravely) opt out. I also embrace alternative ways of helping myself (nature, exercise, good food, mindfulness) which makes me feel more in control.

  • Hi Jackie

    I think you have expressed so well how I think many of us feel. I was diagnosed in 2007 with stage 3 OC at the age of 48 and told I probably had about 2 years. Well as you can see still here 9 years later, currently NED and working full time. Getting on with life as best I can but feel like I have a massive shadow following me and I go out and pass people and think 'I'm different' . What I wouldn't give for 10 minutes to have piece of mind then another part of me thinks, you know what, I have this but all it really means is that I am forced to face my immortality. Lets face it none of us get out of life alive..... It's an odd feeling. Are any of us really in control....... who knows when that big bus is gonna come round the corner and mow us down. So I try and look on each day as a gift, the 'present' and I'll let the future take care of itself. With that said I'm off to Tenerife next weekend for a week by the pool, book in one hand, cocktail in the other! and all my chins held high!. Enjoy your hols. Kathy xx

  • Thankyou all !! Such words of bravery and wisdom!! I salute all of you!! Onwards and upwards for as long as we are able

    Much love to all my kindred spirits

    Jackie O xxxxc

  • I feel the same. It was a shock to come back as a stage 1 I thought that was good news but it's not relevant really a recurrence is also an evaluation. I'm doing everything to avoid stressful situations am working and trying to just crack on. It's hard this OC lark and life is different to how I imagined pre cancer. We just are having more holidays which I think is a bonus

    Virtual hugs winging their way

    LA xx

  • Agree with all the other ladies comments.

    Sending lots of positive vibes

    Judy x

  • Hi Jackie

    I know exactly what you mean...sadly you can't 'unhave' OC..and the only time I will know that I've survived 5 years will be in 4 years time...

    So it's one day at a time...no risky forward planning and ..when I'm feeling down..no dreams either... But hey ho...we are still here (!) and I'm trying to concentrate on being grateful for what I've got 😬

    Lyndall xx

  • Dear Jackie. You took the words from my mouth. What you said really resonated with me: the peace of mind gone, suspended sentence, loss of control and powerlessness. I feel the same. I think this illness creates a huge sense of loss, like a bereavement --- but instead you are grieving for yourself. These feelings are totally normal and all part of being human. People grieve in different ways, so I hope you can take the space for yours. As others have said there are lots of small and big " joys" to be had even while you are wondering what on earth will happen next and will I be able to cope when whatever it is arrives. Big hugs x

  • I know what you mean about grieving for yourself - all my lovely long-term plans feel very shaky at the moment. I'm on a travel forum for holidays to Orlando (it's been a big dream to take the kids in a few years time) and all the happy people are booking for next August...I'd love to be able to do it, but I don't feel like it's possible at the moment 🙁

  • Hello Jackie, I too am 68 but for some reason I don't seem to believe it will come back (Stage IIIC OCS). I'll not deny there were pains associated with the chemo and the operation but on the whole I found the whole experience interesting and exciting. I admit my idea of lying in bed in hospital after the operation was not quite in the same poetic vein I'd imagined it, but mostly I was excited by it all (I've never spent a night in a hospital before).

    Whether I can be so composed if it does come back, remains to be seen. The only thing I can suggest is to continue doing whatever you usually did prior to the diagnosis. Don't give up doing something because of your diagnosis. Just be you! All the best! Helen

  • I like that - excited about being in hospital! There certainly is an element of novelty to it, and I actually really like hospital food 😄

  • Jackie0, this is a powerful community of women who understand EXACTLY how you feel. The good news is that we each get to create our own "new normal" based on how we think. You know, "Change your thoughts, Change your life." It took me awhile to understand that I could find inner peace by simply "being here now". I say to myself all day long "I am fine. I am here. I will drink in this moment. I am grateful." It works for me.

    I don't know what the future holds, so I've decided that I will NOT LET CANCER ROB ME OF TODAY. I've survived breast cancer, I will survive this too. I've summoned all my anger and rage at having been misdiagnosed for two years and re-purposed that negative energy to ENJOY HERE AND NOW. For me, that is the healthiest gift I can give to myself and my loved ones.

    The women on this forum are a source of courage. They have made a positive difference in my life. I thank every single one of you for your generosity of spirit and for keeping a sense of humor during the darkest of times! Tesla

  • I agree totally xx

  • Hi JackieO

    As you can see everyone has the same uncertainty and fears. It's how we choose to deal with it that matters . If I had my almost 5 years NED back again I would try not to waste it worrying about what may never happen. That's a hard thing to do when stage 3 and 4 nearly always recur . You sense people want to say to you " you look so well. Just get on with it ! " . I feel more positive now but I think Cancer of any type leaves an indelible mark on your very soul . I found joining a support group and practicing Mindfulness etc really helps. There are many people walking around not even realising they are ill and we get checked every 3 months. You have so many great replies to your post that I can't improve on. The best of luck.

    XXX

  • Hi Jackie,

    Your post brought tears to my eyes, exactly how I feel especially at the moment with no chemo working.

    But I have been going with this for 6 years in Nov and had a couple of good remissions.

    Lots of good advice from the ladies.

    Take care Trix x

  • Bless you,6 years! Wow, something for me to aim for

    Sorry your chemo not working. Can they trial you for immunotherapy? Seems to be very much in vogue at present

    Love and good luck to you

    Jackie O xxx

  • Thanks, problem is all trials are up country and I am south of Bristol.

    X

  • Yes yes yes! That's exactly how I feel. As if I will never be the person I once was, or get up in the morning feeling well and "normal" as I used to. My life is now defined by my cancer and I feel like my body (which used to be strong and capable) has turned into a weak and wobbly thing that is constant!y letting me down.

    I know this is a bit of a rant, but I am just getting over a nasty urine infection and am 4 days past my last chemo so am probably a bit run down. I am the same e age as you, and until this hit, had felt that I could tackle and conquer anything. What a difference six months can make!

    Jenny

  • I can only agree with all of you ....there are days when I want to give up ....but five and a half years since diagnosis and still here ...and no mistake , either here ....or not ! So absolutely , live in the present , day by day ...we cannot go back to yesterday but we can plan our futures albeit in small bites . Not the retirement I had planned , but it will do .

    I gave up beinghouse-proud, for what I could manage ...having worked all my life , I can set back and say , " hey , this is how it is ." For those of you with young children and teenagers , and dogs , enjoy it all and spoil em rotten ....what we all know , is that life is short ...and we are luckier than many others in the world .

    Have the best day you can and are able ;-);-);-).

  • Love to you all you super women xxxx especially Jackie O, love you Mum xxxx

  • Jackie, I don't think we will ever have peace of mind again, so do all you can to live each day as a blessing and focus on enjoying the love and support of the people you care for best and helping your body heal in a peaceful environment. Xxx

  • I know how you feel. I went from never being really sick a day in my life to stage 3c primary peritoneal ovarian cancer. It was a terrible shock to me and my family. I have learned to except what I can't change and just live one day a time. I admit I think about it everyday,but don't let it over take my postiive thoughts. God is watching over all of us.

  • I was counting the people who are praying for me just now. I have our village Vicar, our current and previous Quaker Meetings, a Catholic Abbot, several Muslims, a Buddhist, Baptist and Methodist ministers and lots of lay people. Most bases covered there! As it happens, I have always thought the only valid prayer is 'Thy will not mine, Lord', and I'm sticking with it.

  • Oh Jackie as you can see you are certainly not alone in feeling like this! That peace of mind and confidence that life will always work out ok somehow .... I don't feel that anymore. But sometimes it just feels miraculous that I am still here, still getting people saying 'you look so well', (!) still able to enjoy many things in life, over 2 years after diagnosis after 2 ops and 3 courses of chemo!!

    You have had so many good replies that I can't really add much to, I totally get how you are feeling but all we can do is try and 'stay in the day' , have little and sometimes big things to look forward to, and do our best not to let this ghastly thing take away all the good things in life. You are strong and think of all you have come through so far, we are all in this blimming rocky boat together and we'll keep each other going!

    Take care and enjoy those holidays.

    Love, Madeline xx

    ,

    M

  • Hi Jackie Just like you and many of these women I feel the same way as you do. OC will always be a part of my life now and it is always in the back of my mind. I'm 58, was diagnosed OC 3C in May, had nine rounds of chemo (Taxol and Carbo), debulking surgery with no residual disease evident after, but a pathology report that showed microscopic cells. I just had chemo 4 of 9 to take care of microscopic cells. But, I'm scared, and I am struggling with what my future will look like, and I'm trying to be positive, but it is hard. I feel like my life is forever altered. I had a great life before all of this - I'm a teacher who loves her job, have travelled a lot in the last 6 years since my 30 year marriage ended, and felt so fortunate and happy with life. Now - wow am I struggling with this uncertainty!!! I was feeling fairly positive until an appointment with the gynecological oncologist yesterday. She said to take advantage of times I feel well because there is no guarantees. She said I don't know if it will come back in months or 6 years. I knew all of this, but to hear it spoken from a doctor has really affected me. So, I need to process this and try to get back in that positive mode again. I need to find a way to not let this run my life, although I still do have 5 more chemos scheduled. I do find strength from the women on this forum, and I know we're not alone. Hope we both can get to a feeling of peacefulness! Kimxo

  • Hi Jackie O,

    Just found your post,I was 60 in June,am 18 months from the end of chemo, I was stage 1c and had 6 months carbo/taxol.

    I totally agree with all you say, I feel like there is a sword of Damacleze over my head all the time.

    I have a "routine scan" coming at the end of October and it is hanging there every day until it is over.

    So, I have just come back from Dublin and am going to Lanzerote on Oct 17th, in between I am filling my days with meaningful and useless tasks,just so I don't have to think or dwell on it.

    I am a happy person,but when I have a dark day it can be pitch black,

    You hang on there girl, we are all with you and certainly know how you feel

    Lots of love

    Carolexxx

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