please help me I'm so sad

Hi everyone,

I am on my second line of treatment I had to start the second line treatment too soon [6 months] I feel that I'm am stuggling to cope, my mind cant seem to come out of the past when things were so much happier and carefree and how may be I could have prevented the OC, I feel that there is a black cloud over my head and I am so afraid of what's going to happen since my chemothreapy was resissant the first time, every little thing makes me cry, my husbund said I must try and snap out of it and come to terms with what has happened, he said if I contiune to feel so unwell they will stop the treatment or worse put me in hospital, it is such a terrible cancer to have, I did really well on my first line my CA125 came down to 13, I was on cloud nine, I feel cheated and punched in the face and I'm just crawling back up this slippy slop for ever and ever with no light at the end of the tunnel. has anyone else done second line treatment and had a bad rash on their face, god help me when I have to loose my hair!!!

Sarah23

17 Replies

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  • Hi Sarah,

    I know you have been struggling to cope with the news of the return of your oc as I have followed your questions and blogs. Have you managed to get any support from Macmillan? Have you considered talking to your GP - he may recommend an anti-depressant? There is no magic way of coping, but I would say if your CA125 went down to 13 before, it is likely it can be reduced again. It has taken me the best part of a year to come to terms with my fate, but my situation is different in that I have not responded to any chemo. My husband and working from home, little goals like a walk around the block, thinking about what food I would like whilst trying to stay as healthy as poss, making the most of the days I am well, staying in touch with my Mother, flowers, birds, even watching choccywoocydoodah on the TV, all have kept me going. I do have cries, but I know they don't help and so try and snap out of it ASAP. I want to make what time I have left with my husband as happy as possible. We still laugh together. I doubt they will stop treatment or put you in hospital if you are depressed, but I would consider anti-depressants for your own sake.

    I do hope you see your CA125 plummet again soon, and then you can make some more happy memories.

    Love Lizzie

    X

  • Hi Sarah,

    I know it feels like the rug has been pulled from under you again. This disease is so hard it sends us on so many rollercoasters. I was diagnosed in 2007 and have had to have chemo every year since. I know that I will never be cured now but the chemos will hold the disease hopefully for a while I am still here and living an almost normal life for a 66year old. I have down days and weep , I am scared every time I go to see the oncologist incase the news is bad. There isn't a magic answer. As Lizzie says speak to your GP. He may put you on some antidepressents ( you take painkillers for pain, so why not some antidepressants when you feel so low) or/and he may refer you to a nurse specialist ( you can ask to be referred to one too). There is help out there. Our loved ones can find the emotional and the disease side so difficult to cope with as they cannot fix things.

    I haven't had a rash. I lost my hair with taxol first time around, but thought I looked quite elegant in Fancy styles with scarves and saved a fortune in haircuts , no bad hair days either!. Last october I had taxol again but this time used the cold cap, my hair thinned but I kept it.

    There are many treatments still to try Sarah so don't give up Side effects can all be different .There is also a lot of help locally and this site never ceases to amaze me with the love, support, knowledge and advice that our fellow sufferers give

    Love Sue

  • Hi Sarah

    I'm so so sorry that you are going through such a hard time and totally understand where you are coming from. I'm also on 2nd line treatment, finished 1st line in April last year and was knocked for 6 in December when o was told it was back. I cried like a baby. Even delayed my chemo as I was in denial. Sarah for me it is the unknown that is the scary part. Initially all I kept thinking was what was the point of treatment if the rest of my life meant a few months of remission followed by treatment which made you feel lousy but the thought of being around for my family has kept me going. There are still so many things that I want to achieve. Don't get me wrong, the last year and a half has been a nightmare, I've had to move back with family 130 miles away from my home, I used to fly around the world for a living and have had to give that up all be it temporarily. Sarah what you have to remember is that nobody said it would be easy, we all have really bad days, I started seeing a counsellor and it was one of the best things I ever did. I have finally realised that it is ok to cry with family and friends instead of always trying to be strong and again that has helped me immensely. Everyone is different Sarah, I find this site to be a godsend I don't know how I would cope without the support, knowledge and wisdom of the ladies on here. The other way that takes me out of my dark moments is realising just how lucky I am to be given a fighting chance. My ca125 has gone down to 11 after 4 cycles from 1148. You are not alone with your fears Hun, just try and draw strength from wherever you can and don't beat yourself up, it is totally natural to have bad days or even weeks and totally agree with the other posts about talking to your gp. Oc is one of the hardest things to come to terms with and o sincerely hope that you find your inner peace. We can all pray for a cure and better tomorrows.

    Big big hugs to you Sarah.

    Shabila x

  • Sarah, I know exactly how you feel as I am feeling it too. I finished my first line chemo in December and had my end of treatment scan end of January which has shown new problems on my bowel. I am absolutely gutted, deflated, bitterly disappointed and I overwhelmingly sad. I have been told that they can't cure it but can manage the symptoms for a while. Of course this depends on whether I can tolerate it or not . The worse thing for me is seeing my normally fun loving husband so upset and crying and there's nothing I can do about it. It really is horrible.

    Like other ladies have said, this site has been a godsend to me and it's so useful to share the experiences of others. I suppose we just have to try and be as positive as we can be, hope to cope with further treatment and maybe buck the statistics and go on for as long as we can.

    I wish you success with your second line treatment - I'm due to start mine in a couple of weeks and pray that I can have some remission this time . Take care and be strong - I know how hard that can be! xx

  • I also am going to be on 2nd line treatment starting in two to three weeks time after only 6 months remission What you have said is exactly how I feel and I dont really know how to deal with it. All I can say is keep fighting love and hugs nikkixx

  • Hello, Sarah. Like you, my second line started only a few months after my first line ended. My CA 125, that started at 4,700 when I was diagnosed, never got lower than 100 after first line treatment since there was residual cancer that they could not remove.The cancer has spread to lymph nodes under my arms and in my chest and back and I am now on a 6 month trial with chemo and meds. I remember feeling disheartened when I received the news of the spread and that my CA125 was around 1400.

    I have found that sharing experiences with other patients receiving chemo is often inspiring and encouraging - I have met quite a few people who were told that they had only a few months or a couple of years to live and who surprised everyone by living much longer than that. I did not realize that this was possible in cancers with a poor prognosis. I was told I had 18 months to 2 years when I was first diagnosed 16 months ago but am still doing quite well.

    It can be terribly hard for loved ones to deal with someone with this disease. Some go into denial or find it hard to cope with their own sadness, while some become angry or impatient, just as we do at times. Is there a hospice in your area? I asked my GP to refer me to one, so that I could do some gentle exercise and receive holistic treatment. There is always someone there who can listen with empathy if you need to talk. I have also found Macmillan's telephone line useful. At the hospice and at some hospitals, counselling is provided, not just for patients but for friends and partners. This might be helpful for you and your husband (separately or together). As to your rash and hair loss, I have a rash at the moment, but this time round have not lost all my hair. I still wear a wig, a spiky punky one. I got it on the internet along with several others. They are very cheap and fun to wear. In fact, I think they are on improvement on my own hair as it was!

    After my first line treatment ended, I reacted quite badly, felt totally lost and frightened, even abandoned, probably because of all the support I received at the hospital. I went to my GP and was prescribed antidepressants. I asked for a hospice referral at the same time. Both helped considerably so that I was able to start my second line treatment in a better frame of mind.

    I do hope that you are able to get the help that you so obviously need.

    Very best wishes,

    Carrie

  • Carrie, whats the site for the wigs? do they look good? Love Sue x

  • ebay! I think mine look pretty good. Certainly better than the free wig I got at the hospital and the more expensive wigs that you can buy in the shops!

    Best wishes

    Carrie

  • I got a super NHS wig from 'Will's Wig's' in Bromsgrove. NHS wrote a prescription out, I took it there and they did a fitting. The one I decided on (in the photo) was £135 worth of hair! There was one at £175 which was a little pixie cut that I really liked, but I decided the one in the photo was the person I wanted to be :-)

    Love Lizzie

    X

  • Sarah23, wish I could give you words of wisdom,at the moment I feel the same as you and nikki19, I am going to ask at docs for counselling,never thought I would ask thought I could cope but have decided I probably cant and finding it very difficult to take the plunge and ask for help (havent been to see local surgery since diagnosed) we all need help along the way, this site has been a life line to me. Hope it has helped you that we are all here to help each other, you are not alone with all your feelings, so no words of wisdom, just my wishes to you and lots of hugs. Love Sue x

  • Dear Sarah

    I am on a 4th line of chemo. I got depressed after the 1st line and surgery when it sank in that this was it. Life would never be the same again. I think I had been living on nervous energy and in 'fighting' mode until that point. I was both physically and emotionally spent. I felt so depressed that I couldn't see the point of getting out of bed. If you are anything like I was you should speak to your GP. I had been such a self-reliant and sorted person I hated the idea of anti- depressants but these are exceptional circumstances.

    So my advice is to set yourself little goals. Such as 'for the next half an hour I WILL NOT think about cancer. I will listen to the radio and paint my nails.' My GP told me to force myself to do normal things 'even if it felt like sawdust in my mouth'. Just go through the motions of normal life even when your heart isn't in it. Very gradually you find that you do smile without making yourself do it. It is a slow process, gradual steps but with the back up of anti-ds and your own determination you will wake up one morning and realise that life is worth living again. I had 2 young children at the time so that helped in a way as I owed it to them to make an effort.

    Don't put up with the rash. Speak to the oncologist, the nurses, anyone who can give you advice as to how to get rid of it. It is little things like that which affect your appearance that can really get you down.

    Love from another Sarah XXX

  • Hi Sarah

    I really feel for you, it is so difficult to go on with this, my second treatment is due to start soon, I delayed it a bit with the agreement of the oncologist, but will probably start at the end of the month, it is very depressing and frightening and so much more difficult to face the second time, I only had 3 months before found out mind had come back and it will only be 5 months between treaments, which is not good, but what else can we do? Do see your GP and ask for referrels, you need someone to talk to.

    Love George x

  • Hi Sarah,

    I noticed you deleted your 'wash up' post to this thread. I hope this is a good sign and you are feeling much more upbeat.

    Love Lizzie

    X

  • Firstly a big hug!

    Secondly, know this.. there is nothing you could do to prevent getting OC.. It is indeed a cruel disease..

    I do hesitate at times to comment on here, but your post touched me as I have been to the place you are, and its a very lonely place even when you are surrounded by people. So just wanted you to know you are not alone.

    One thing I have noticed, as hard as it is for you, it must be as hard for your husband. I am no man expert for sure, but men are not usually great at saying the right thing when you need it the most are they!! And 'snap out of it', it not going to help!! Nevertheless, his intention was a good one.:)

    I felt a bit of a failure at first, when I accepted counselling, but it has gone some way of helping me so don't rule it out now or in the future if you think it may help. If you feel you are struggling with your feelings then you do need to talk to someone and the Macmillan nurses are absolutely amazing that's for sure....but I got to point where it was obvious that I needed further help and I discovered it was easier for me to talk to someone I didn't know, rather than someone I did. I think it's because I don't feel like the same person anymore, not at the moment anyway. So for me talking to a counsellor, a stranger, has helped me break out of that despair pit I was struggling to climb out of.

    I really wish there were some magic words to make you feel better. We are each fighting this illness the best we can and it does seem so unfair that for every step forward, there seem to be two steps back.. But we have to be stubborn with this fight, and force ourselves to keep going not only for us, but for our love ones too. Be determined to fight and beat this illness. We know about the bad days, and its hard to remember that there will be be good days ahead when you feel almost human!!

    Stay strong

    Julie xx

  • Dear Sarah

    As others have suggested, do talk with your GP. I resisted and resisted anti depressants but am so pleased my GP talked me into them; he was right and I have felt much better since taking them. They just seem to level things out a little.

    I also see a counsellor who has been helpful - evben in just letting me rant sometimes...

    Fighting this bloody illness takes so much energy and it's absolutely fine for you to want to cry. Give yourself some treats like a face mask or painting your nails and forget about cancer for a while. The sun is around a bit lately too, go and have a walk and enjoy the nature around you and know that all of us on this website are sending you a hug!

    Eleni x

  • Hi BusyLizzie,

    Thanks for the message yes I did delete the message I'm not that good at writing bloggs a the best of times but because everyone has been so kind I thought I would give it a go I dont feel any better but I need to snap out of it a little for those around me and take some sights and sounds in and have a few hours of not thinking about O.C very hard to do when I wake up on a morning when my mind goes a mile a minute and just does not shut down!!

    Sarah23

  • Hi Sarah,

    Your blogs have all been heartfelt and understandable so no worries there :) I do hope Sarah, you don't try and soldier on hoping to 'snap out of it' on your own. Please, please think about seeing your GP for anti-depressants. As the ladies above have said, it has really helped them cope, and I am sure it would you too.

    Either way you have all my support and I feel confident this treatment will get you back into remission.

    Love Lizzie

    X

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