Please help me girls to get out of this gloom

Hello sisters. I think most of you know how happy I usually am but before Christmas I went to a very dark place. I feel well and my hair is growing. I had my PET scan yesterday and blood test this morning. My CA125 result just came through. Last one was 22nd December at 125 and now a month later it's 126.6. I knew in my heart that nothing was happening since I went on weekly carbo/avastin only but they won't give me Taxol or Taxotere again after what it did for me. Together with a load of stuff going on with other things I just needed a boost today and it hasn't come. I don't know what to think about the future and I need your good advice. What with our two sisters now facing an uncertain future I don't think I can take much more. With love Kryssy xxxxxx

31 Replies

  • My lovely Kryssy,

    You are an individual, you have faced this beast head on and have always come through the other side no matter what it’s thrown at you. As for our two sisters with the uncertainty they face, we can only support them every step of the way.

    You’re certainly an inspiration to all the carers on this site the same as every lady going through this horrid disease. Xxx

  • Hi Kryssy,I ve read your post and know exactly how you feel.Future seems so uncertain and it frightens me.5 th round of chemo (this time) this morning.

    ca 125 are down to 21 from 178,which is great.Tumours have shrunk by 50%,which is great.But I know this won t be the cure I crave.It Is likely to shoot up again,Its aggressive,came back after 15 months.Some days I struggle to feel cheerful.I can slap on my best smiley face when my kids and grandchildren are here but feel so sad when they leave as I know I won t see them grow up. But I want them to remember a smiley,happy Nanny.

    Someone told me recently to be a little more kind to myself.These darker days do pass.The weather plays a big part too.Cloudy,wet and cold doesn’t lift the spirit,but spring is just around the corner.

    Be kind to yourself,I hope it passes for you too! Sending you a huge Welsh Cwtch. Hopping for brighter days.XXX😘

  • Chin up my lovely, you know worrying won't change anything, we are all different this sodding deciese doesn't deserve any of our tears.

    Tomorrow morning get up and refuse to think or talk about it, do something nice your oncologist will soon have some other plan for you and will get you back on track.

    My ca125 is rising I was 17 in September and 40 last week and that's on Avastin going for a scan on Monday and then the waiting game for results, decided to go for early retirement on ill health so waiting for that to get going I'm stage 4b ppc finished chemo in September 2017.

    Here's a joke from Alexa what happened to the cat who ate a ball of wool, she had mittens lol jokes are so bad.

    Have a lovely evening x

    Trish xx

  • Hey Agent Rainbow 🌈 great news about the hair. I’ve booked a hair appointment for 1st Feb roots only too long in the chair for highlights.

    Sounds like your bloods are stable which is good news. I was told only worry if it doubles on each reading. Up and down is okay. You know you can message any time

    Chin up spring is coming and today is precious

    Much love

    LA xx

  • Dear one, we all have this bloody awful down days, which no one except ourselves can help get out of it. I have had many many down days, now with help if anti depressants , manage better, except when on chemo, when my body and mind are taken over by a poisonous force!!! Then my bed, some comforting blankets, maybe a little brandy, help until the end of chemo when like a camelion I shed my skin and emerge as me, smell the fresh air, look at the puffy clouds and embrace another day of life.

    Kryssy, you will come back!!

    Much love Jackie O xxx

  • Oh Kryssy, I understand your disappointment in the number not coming down, but it’s only gone up a teeny tiny bit and we all know that can be affected by underlying issues and stress and not always necessarily our mutual foe but I do know how much we all use the CA125 reading as our guide to our state of health. I’m assuming you’ve not had the results yet of the PET scan so we don’t have a full picture of what’s going on.

    Christmas often sends many people into dark areas, there’s so much pressure and emphasis on us having such a good time, since my children grew up and fledged the nest with their own families I find Christmas to be a time of pressure to enjoy myself without all the fun and daftness we used to have, so you’re not alone feeling blue around that time. From what you’ve said, I’m assuming there are other issues that are affecting you and I believe that once we start to feel out of sorts with ourselves simple things, that once upon a time wouldn’t have phased us, can become more and more overwhelming, it’s a vicious spiral but you’ve taken a really big step telling us you’re struggling, so well done you 🤗.

    Speak with your medical team lovely, you're dealing with both physical and psychological issues and your recent blood test results have just added to your problem, I had some CBT therapy which was really really helpful, it helps you to think differently and how to approach situations from alternative perspectives and it certainly couldn’t hurt for you to speak with a professional person who can help guide you, alternatively the lovely nurses at Ovacome are there to help us too and could point you in the right direction for some resolutions to your problems.

    We have had news here recently that has upset us and we are all here to try to offer support and encouragement to each other whatever the situation and you’ve been a stalwart amongst us since you joined us, your humour and insight have helped so many people here and it would be nice to see you back in full fighting form.

    Try to get some guidance lovely so you are able to put all the ‘pieces’ back into their right places and you start to feel a little better soon.

    Sending you big hugs and lots of encouraging love ❤️Xx jane

  • I don't know if this is relevant, but often people do get a little more down around this time of the year due to seasonal affective disorder. I know it takes less to get me depressed, even if things are going okay.

    I always try to rationalize things when I'm down. I say to myself that "things could be so much worse", and it does comfort me and help me to appreciate what I do have. I think it sounds like you're stable health-wise, which is a great thing, and something to be thankful for.

    Although I know I should listen to this advice myself, worrying about what may or what may not come doesn't help you today. We truly have to take it one day at a time. Sometimes when we're in the midst of dark times, it seems impossible that you'll ever come out of it, but gradually your mind and body kind of re-syncs with the world and you get back to your everyday self again.

    Sending hugs, and support


    PS: The CA-125 going up a point or two is nothing really. There's a margin of error with these things. Apparently if they tested it twice the same day it could produce 2 different numbers. That actually happened to my mom one time where a nurse did it again not realizing someone else already took it, and the results came back as a 3 and a 4.

  • Just a little hint - you can opt not to know your CA125 - I don't! My onc knows it and that is enough. Not an approach for everyone, but it liberated me from CA125 stress. It's actually a very tiny difference in your readings. It's when it starts to double that it means trouble. The days are getting longer and soon we'll be out of the dark days. Look for the flowers. x

  • Sending big hugs 🤗 Kryssy. 💐💐💐

  • Hi Kryssy, we are all different, yes it is a bad time on this forum and others at the moment but our lives are valuable and worth fighting for. That is not much of a rise with the 125 and it could be for many other reasons so don't jump the gun, Along with this illness sometimes we have crap carry on to deal with as well, This is actually very hard on us and we need to acknowledge this and then let it go, We can only do our best, we can try to find a way around our problems. Sending you a big hug

  • Oh my lovelies. You have made me feel so much more in touch with reality. My hubby is being so lovely and I decided to get my knitting out and he is sitting with the two different coloured balls of wool tryhing to unravel as I go (I'm not the best knitter in the world :-( )

    Dearest Jane - Stress!!?? You would not believe the stress I've been under these last few months. Nothing to do with cancer or hubby or anything domestic. Agent Cerise - a.k.a. Lily-Anne - knows all about it but it's too long and boring really to explain everything but basically I fell out with someone over here after 4 or 5 years of what I thought was friendship. Because I trust easily I assumed that she would never be disloyal or lie to me because I never do that to anyone. But she did it so often that in the end it was too much.

    Some of you may relate to this..... When I was first diagnosed back in July, all the control of my life was taken away. Strangers were telling me that I was going to get this drug or that drug, that I had to go get this scanned and that scanned, don't eat this, don't drink that, don't lose weight, let me stick this needle full of toxic waste in you here or there and there were strangers called doctors having meetings and discussing my body and my life when I wasn't there. The only thing I had control of was how and when to tell those I cared about that I was poorly. Of course my family came first, as did my best friend back in UK, but for those over here it wasn't necessary to shout it from the rooftops. But I told this woman with strict instructions to keep her mouth shut. We used to spend a lot of time with each other so it was inevitable that she knew I had gone for tests etc. She decided that she would broadcast it to everyone and then lie to me when it was my time to tell them and they would say, "Oh, we already know. Thing told us". Finally I'd had enough. Then I got really sick. She took over the group I ran every week and during a few very short months she destroyed it and most of the members left. Since then it's been a nightmare of her lies and gossip about me and my loved ones. Finally we - the Agents (with our overseas trusted Agent Cerise, who didn't actually do anything except support me) - got rid of her and her coven of witches at the end of last year and last week started the group anew. Half way through the afternoon three of her coven arrived and put us through a terrible time of sheer nastiness, screaming like fish wives and refusing to leave. At one point I thought I was going to get hit. We have complained to the gendarmes and if they turn up tomorrow then we must call them at once. We are going to lock ourselves in the village hall so they can't get in. So, yes, lots of stress. So much so that just before Christmas I had 80 sleeping pills in my hand and a bottle of wine and if it wasn't for Anna from the forum contacting me because she thought I was in danger - understatement - then I don't think I would be here now. Last week, after the afternoon of verbal abuse - I went into my black hole again but didn't do anything silly. Now today has put me down there again. BUT, I WILL NOT LET ANYTHING STOP ME LIVING. There, I've said it.

    I've been upset about our lovely Agent Cerise since she shared her terrible news with us all. And not just her either. You have all been so kind with your comments. I told my hubby that the sisters would know what to do - and you have. I'm not cheerful - that's a bit of a strong word at the moment - but I'm not crying onto my knitting, even though it looks as if I've made a balls up. Still, it's a scarf for my number one son and he's very forgiving.

    Thank you all so much for your wisdom and support. I will keep your kind thoughts in my head and let you know how it pans out on Monday. Hubby has just brought me a glass of wine. He's so sweet but I know he's crying inside. Tomorrow is another day - for all of us.

    Trish - thank you for the joke. Very apt tonight. :-)

    Going to watch Eastenders now. See how other people are more miserable than I am..... :-)

    Bless you all, my beautiful and brave sisters. Love and big hugs, Kryssy xxxxxx

  • Hi Kryssy.

    I don't post on here that often. Usually to request advice, or offer advice on a specific question if I think I can help.

    Having said that, I follow the forum every day and have been following your posts since you joined the forum.

    I just felt that I wanted to send you love and kindness at a time when you are feeling hurt and vulnerable, and to let you know that we are all here watching your back and offering support. Even the army of us who don't often post.


  • ❤️🤗❤️🤗❤️🤗❤️🤗❤️. Lots of love and big hugs lovely, keep on being as strong as you can be, we are all here for you ❤️xx Jane

  • Blimey Kryssy, what an awful time you’ve had. I hope there are no more problems and that you can feel less stressed about your CA125. Mine has gone up to 290 from 234 a few weeks ago, but they are still adamant there is no recurrence. Scan results tomorrow, then holidays to be booked while I have permission to go.

    With my very best wishes, Ali x

  • Omg KRyssy that is one deep dark tale.... I will reply more tomorrow as we just got in but I think you need to make us all agents to support and protect you from these witches.... I think of you often.

    Janet x

  • Hi Kryssy, Sorry love you feel this way you have been so positive for so many ladies on here and your seance of humor has help us all.

    It's been hard the last couple of months with the lose of our beautiful sisters and this makes as look at our own future.

    Remember we are all so different in this battle and you still have along way to go .

    I might have told you I was told I would not see the year out I'm still here over 3 years, It's not always been easy and the longest break has been 5 months , I have had 5 different chemo treatment my history is as soon as I go off chemo my 125 goes up, at one time to 1300 my oncologist got it down with carbo/caelyx to 56 .

    I've been off chemo for 8 weeks and it up to 98 I'm of chemo becourse Monday I'm going to hospital to trial a new drug I must admit I'm scared not sure of the side effects being a new drug.

    My oncologist said I can always go back on caelyx she feels we still have opinion.

    The reason I'm telling you all this is so you can see there are treatments that can be put in place with good results for a long long time.

    Take care my lovely Lorraine xx💙💙

  • Goodness gracious Kryssy. You are one amazing lady to still be standing after so much crap. My heartfelt good wishes are flying at supersonic speed to France to join the crowd of love and support surrounding you. Your dear husband derserves a loving hug from us all too. Jo 🌼🌸🌺🌹🌻

  • Sending big hugs-I have big glooms-especially when I'm feeling sick. Today I have been better-we have to ride them out. Keep up the good knitting-I love knitting but nothing comes out very well for some reason.

  • Hello Kryssy, so sorry to read about all your woes, the last thing anyone needs on top of this disease is shitheads to deal with. All I can say is such people have their own very serious problems and can only make themselves feel better by 'attacking' others somehow. Ignore them and pity them. They have a different kind of cancer inside them.

    I hope your mood lifts soon. I'm sure no one can feel cheerful all the time with this thing, and putting on a brave face is not always the best thing to do. I know after chemo (which is now) is when I get my blackest moments. This was also my last chemo, though I still have Avastin for a long time. Now the scans start and I'm sure I will have to readjust my brain to deal with this next phase.

    Meeting friends for coffee, doing art, going for daily walks, or just sitting in the sun - all these things have helped keep me sane. Not to mention my family who have been more than wonderful.

    Sending you lots of hugs and happy thoughts from Leipzig!! Lots of Love Christina xxxxx

  • Hi Kryssy, we all have days/weeks like that, times when you feel and wonder what is the point of continuing if this b***dy thing is going to get you in the end. But, that’s when you have to get hold of yourself, take a good hard look in the mirror and think, well I’m still here and whilst I can walk and talk I’m going to enjoy each day for what it brings. Do something that brings you pleasure, play your favourite songs loud, and dance like no ones watching. Or go window shopping to your favourite area, meet up with a friend for coffee. Just make time for you, doing what you want. We get on this roller coaster of hospital appointments and waiting for results, that it takes over our life and personalities. But we have to try to keep the negative thoughts at bay. I try to make plans each month, even if it’s only meeting a friend for lunch one week, or having my nails done, so that I have things to look forward to. Take care of yourself. Xxx

  • Good heavens there are some wicked people about! I try to pity them as their lives are consumed by nastiness and they must have very sad lives! Do try not to dwell on thoughts of them and focus on positive things in your life and make plans to do the things that are important to you and your family and friends. Sometimes easier said than done but even small achievements can make you feel better. I bake when I am feeling low and too tired to get out as we all have something nice to share when it’s done.

    You will always have love and support here so sending hugs and best wishes, hoping you have a good day today

    Jane xx

  • Hello Kryssy, Spring is coming and you can soon be out in the garden enjoying growing those herbs you enjoy cultivating.

    Forget about other people, push them out of your mind and life. They are not worthy of the time given to thinking about them.

    I have an idea that might help you and your husband concentrate instead on a little life that depends wholeheartedly on you: a puppy! I know you lost your beloved dog last year but perhaps.......

    All the best!

  • Hi Kryssy--well first thing to try to remember is what a lovely husband you have. I find on the dark days/times, if I focus on my family and close friends I feel alot better....that being able to smile at them, know they love me, care so much, helps climb out of that hole a bit. Breath in fresh air and remember you ARE here and as I am learning, stable is sometimes a very good word and your numbers show "stable". Wish there was more to make you smile....I tell very bad jokes. But I am thinking of you and envisioning you knitting with husband's hands helping. Now I wish I could envision you smiling again.


  • Kryssy. i do feel for you... maybe its difficult to accept. that all of our our futures are uncertain....its the nature of life;do hope you are getting some counselling...or at least have someone you can talk to honestly...maybe we, given the nature of our disease have to face up to reality a bit sooner than most but it is reality nevertheless and at some point is the same for all of us on this planet(!)

    From your posts, you have a lovely family....enjoy them as much as you can....think of your next life least, it sometimes helps me when I feel most negative!! lots of love and thoughts Chris xxx

  • Hello, I had something similar happen last November. A friend I have had for 44 years came over so that we could go shopping and lunch. She bumped her car on a post outside our house (not badly) and was in very bad mood. Hubble said something to her and she went absolutely mental. I was completely shocked, never seen anything like it. Happily she left. I haven’t heard a word from her since. after I got over the shock I went through many different feelings but decided she has lost a friend and made her world smaller. I sometimes think about her but I know I am the better and happier person. Your ex friend is the loser and your the winner.

    Loads of love to you K.

  • Kryssy, I just want to give you a great big hug, your sisters are all at your side, this week has been a horrible week knowing what some of our sisters are going through. We are all here standing tall with you against these nasty humans, but you need to care about you.

    Hugs kisses Ellsey xxx

  • I'm so sorry Kryssy that I can't be much of a help to you. I think we all have our ups and downs for what seems at the time, for no reason. We need these bad times sometimes so we know when the good times have arrived.

    When the weather improves and the sun comes out, you'll feel so much better. In the meantime I'm sending good wishes, hugs and kisses. Love Zena xxx

  • Smiling to start

    A policeman spots a woman knitting and driving at the same time. Driving up beside her he shouts " Pull over! " . NO she shouts back " A pair of socks!"

    You have to giggle / google. SOme hilarious visual knitting gags....

    Now you are all relaxed, ( hopefully) I agree with what all the ladies are saying on this thread. Don't waste energy even thinking about this woman. Don't rise to her taunts, you are a better person so just give her a blank WTF look if she continues to cross your path and stay shtum (?). She obviously feeds on confrontation and can whip others up around her, but don't light her fire.... stay calm and cool

    It made me think about the start of my journey on diagnosis. I feel it matches yours.... So many people surrounding you saying this and that, do this or that, sending you this google link or that...take this or that... all confusing and conflicting advice when you just want to crawl into a dark hole and try and work things out for yourself .

    I realise now they are as scared as you, and desperately want you to survive.

    now I have found my own route ( more or less though it's a work in progress) through to facing and coping with this disease I am in a much stronger place to deal with unwanted and intrusive 'positive' suggestions to improve my life, be it physical, emotional or mental!

    The latest of course now I have a little window of reprieve... is that everyone is super happy for me, assuming I have beaten O.C. and think I am more or less cured... again it stems from them desperately wanting you to be the self you were before this ' life- changing' event took place.

    At first this used to frustrate me enormously, now I am in a karma place. I need all my strength to remain positive and live each day as best I can. We just don't have time for negative c**p.

    I know there comes a time when the burden of knowing no more chemo will help,, prognosis of weeks/ months to live, and pain must be overwhelming. I am in awe of those ladies who are at this point and STILL seem to remain positive ...

    Love and hugs to everyone on this forum

    And a special one to you Kryssy.... hope you pull through this darkness - and spring back to your old self...

    Janet 🌈❤️💐😍

  • Hi Janet.

    Oh, my knitting has gone so wrong. I've had to undo so many rows tonight, following the advice from a friendly expert, as my right side turned into the wrong side in a weird way. I thought that knit and purl was just a matter of following the instructions. No-one told me that you had to have skill as well as being able to read. I've got three weeks to finish a scarf for my number one son. Not difficult for a knitter, but almost impossible for me. I thought there were 87 rows, but turned a page today and saw that there are 95 rows of over 400 stitches per row. I was on row 37 until the mistake. Now I'm back to row 27. I've to finish it before 14th Feb when he flies in. I've been knitting it for over a month. It's never going to be finished by the 14th Feb. Hubby has helped me unpick my mistake so here we go again. xxxxx

  • Hello to all my wonderful and special sisters. I am overwhelmed by all of your comments. I am humbled and feel so loved that it's hard to put it into words. Yesterday, when I saw my very minor and unimportant rise in the CA125, I went into "why me?, poor me!, it's not fair!, I'm doomed mode". I told hubby that I must post on my forum as my sisters would know what to do. How right I was. Reading through your replies has humbled me so much. In fact, I feel as if this cancer lark only seems to visit those who are extra special, although I feel as if we would all much prefer a bunch of flowers or some nice chocolates rather than the OC.

    Today, our art and craft group had our meeting in the village hall. We locked ourselves in, just in case the dark side came again. About an hour into our rather sedate activities of painting, knitting and generally messing about, there was a bang on the door. Oh feck! I said, as I grabbed my mobile, ready to phone the gendarmes. My hubby unlocked the door and peered outside, ready to shut the door and lock us back in again if he spotted the enemy. Thankfully, it was a rather confused chappie from EDF who just wanted to take a meter reading. Phew!! We managed to get to the end of the afternoon without a visit from the dark side so let's hope they have given up. Just so long as they are not plotting their next onslaught. To be honest, if you saw this going on in a sitcom you wouldn't believe it. I suppose our average age is about 65. I would expect this kind of carry on from children in a playground. Not at our age. Anyway, we were all relieved and passed a lovely afternoon of doing all the things we love to do. I came home so happy and then to read all your lovely comments was the icing on the cake. My number 4 son phoned and then my number 2, as they have been following my troubles but Friday night is always chat night. You are all so right. Those important to us matter so much more than the nasties. I have occasionally lost sight of what's important. Thank you all so much for putting me straight.

    Tomorrow, we are going to a friend's house just to see the huge variety of snowdrops that they have in bloom at the moment followed up by a nice lunch. I shall take my camera. I will try to make a montage to show you all .

    THANK YOU ALL FOR SAVING ME. Please, I hope that you all feel very special, because that is what you are. On the other hand, I may go back to being silly and making you laugh. I wish I could meet you all and give you each a big hug.

    My love goes to each and every one of you. I don't have a sister in the DNA world but I have more important sisters in the real world. I am blessed beyond words. Thank you. xxxxxxxxxxxxxx

  • Dear Kryssy Idohope you are feeling better, I myself have been in a bad state , but your post and responses has helped me so thank you and lots of love Bridie xx

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