Hello

My name is Loretta. I am 62 years old. I was diagnosed with Stage 3 ovarian cancer in May 2014. I had a hysterectomy in June 2014 and had to have a Stoma as the cancer had spread to my bowel. This was followed with weekly chemo with carboplatin and taxol. I was unwell during chemo but once completed felt really well.

I had my Stoma reversed in July 2015.

However in January 2016 found the cancer was back. I had more chemo starting in January. In June I had more surgery to remove a tumour in my abdomen which was growing despite the chemo.

A scan in August has shown nodules on my peritoneum and am now on a chemo therapy - treosulpham.

I have loads of abdominal pain. No sickness as yet but only had one dose. Another 5 to go !!

My tummy is very bloated and painful. I can only wear baggy clothes

Some days I feel very isolated everyone around me seem fit and well

I do not know anyone with ovarian cancer to talk to - so anyone who I can share experiences with would be a real comfort to me

It has been stressful to have the cancer recur. I worry about what is to come.

My husband and three daughters are very supportive but it is hard to burden them with my worries. My parents are both alive. Mum is 88 and dad 90 and I know I cause them so much worry. I hate that I am causing everyone worry about me.

Hope to hear from anyone who is dealing with ovarian cancer and its treatment.

42 Replies

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  • Hello,

    Dont feel lonely, there are lots of us here in very similar situations.

    I am 64, was diagnosed in 2012, had the same op and chemo and I'm just about to start my fourth line of chemo.

    I'm not telling you I am feeling ok or enjoying this, in fact I have the same bloating problem, and mine has spread to my lymph nodes, now quite painfully.

    I also have a supportive family, including my mum, like you.

    I try to stay positive, listen to healthy eating advice, keep exercising, albeit gently, and I see an acupuncturist.

    All of these things help me through the dark times and do remember there are lots of us out there to support you.

    Xxxxxxx

  • Thank you so much for your kind words.

  • I had stage 3 oc with peritineal , that was May 2014, I underwent 6 chemo and a radical hysterectomy, and after scan in the November was told I was clear. The following December my CA125 was starting to rise and after several scans and blood tests was told in the April 2016 it was back and I was to start chemo again. I have now finished my 6 sessions in August (after a few problems with carboplatin) and am now on Avastin every 3 weeks for maintenance and am feeling good, some things I still find hard to do, but I know it will get better. (I am 71) you just have to stay positive. we are all fighters here and very supportive. Hope this helps. Hugs to you xx

  • Thank you so much for your reply. It is hard to get through this. Hope you keep well xx

  • HI Loretta and welcome to the site. We are all here to support each other so please dont feel so alone. Us ladies tend to worry about our families but we are also important. I have actually never heard of that drug you are on, but there is an Ovacome Nurse you can ring and you can get that number from the site. I would suggest you also see if there are any support centres near you that you can go for counselling, I found this a huge support as I didnt get the support I needed at home. I would hope that after a few doses your tummy will reduce in size and you can fit back into pants or track suit ends since the autumn is upon us. Your oncology team should be able to help you manage the pain you have at the moment, do speak to them. I know it is hard because we mostly do what we are told but we are also allowed to ask questions so I hope you have a nice understanding CNS, speak to her about outside support perhaps there is a social worker in the hospital you can meet. I can identify with you feeling everyone else is going around doing their own thing and they are fine when we are sick. It does knock us for six. In the meantime if you are well enough get out for a walk weather permitting, if you dont want to meet people you know drive to another area and walk or go to a different shopping centre and have a cuppa. Getting out and seeing people is good, I sometimes think if I see someone disabled that they are worse off than me and that has helped me down through the years. Do come back and ask us anything you need help with and someone will alway be there to give advice.

  • Thank you for your reply. I love to get out whenever I can. My tummy has become so sore walking had become difficult. I am being assigned a McMillan nurse so hope I'll get more support. Thanks again x

  • Hi Loretta,

    Agree with all the ladies,I reached 60 this year and know how familly can be, mostly in denial, because they can't face what might be.

    We are all here for you,just vent when you need to

    Carole xxx

  • Thanks xx

  • My heart goes out to you. I just finished my chemo treatments, first time ever for me. Haven't even had my scan yet, so I can't know what it feels like to have it reoccur. Just know that you are not alone...even though I'm new here myself, I already know that this is a great group.

  • I am really amazed at the replies I've had. I am reassured by them as so glad I joined the site. Thank you so much. Keep well x

  • Hi Lorretta, I too have just finished my first lot of chemo so am new to this too like the last lady.

    Although I do feel for you. Can't comment as I've not walked in your shoes.

    It's at the back of my mind about recurrence, but for now I do try to remane positive.

    This is a fantastic sight and everybody has been so helpful to me.

    Hope you find comfort from being on here.

    Take care xx

  • Thank you. The worry of recurrence was always there after my first lot if treatment. I hope in your case you stay cancer free. It is a great feeling after the treatment.

    Keep well x

  • Hi

    I'm 62 and diagnosed with primary peritoneal cancer may 2015. Had 6 lots of chemo, debunking op and 17 treatments of avastin.

    To say my world was turned upside down is an understatement! I was so looking forward to retirement and then bang !

    I have four daughters and seven grandchildren. It's my daughters who I really worry about because they get upset and worry about me. My husband has been terrific throughout.

    I understand about feeling lonely, because I have very good friends but often feel detached from their lives. They'd be furious to know I felt like that.

    I try very hard to be positive and take each day as it comes. I also exercise ( walk) as much as possible.

    I really hope your abdominal pain settles soon and sending you hugs and support

    Judy xx

  • Thank you Judy. I too have loads of friends but it is the feeling of being alone with the illness. I was in full time work when I was diagnosed so miss my work and my colleagues. I worked for the same company for 28 years and looked forward to all the things we would do in our retirement. We have been married for 44 years !!

    My daughters worry so much about me. I wish things were different but we try to make the most of every day.

    Thanks for replying. It is much appreciated x

  • Hi

    I have just finished my first treatment two weeks ago, and cant imagine what you are going through with this beast returning. I am sending you virtual hugs to let you know you're not alone.

    Ellsey xx

  • Thank you. Everyone on this site has been so kind. I am so glad I have joined.

    xx

  • Hi Loretta, I thought it might be comforting to receive a reply from someone in the position of your daughters. My name is Alison, I am 44. My mother is 70 and is being offered and is considering a third round chemo after constant pain, treatment and recurrence since March 2015. The fact that your family are worried is inevitable. The people who love you want you to be well and they are helpless to help you get better. My advice; seek support from people going through the same thing, take comfort from the ladies on this forum who have the same concerns and fears. Be honest with your loved ones - tell them that you understand what is happening to you and that you will do everything in your power to get well, and that your hope for them is that their lives carry on despite the madness happening in yours. The way you handle yourself will help them get through it too. I hope that doesn't sound preachy, I'm just trying to explain how I am dealing with it. I have my own support network and counselling is available to me and my children and in turn I am trying to support my Dad. Everyone is here on this forum for you. I hope you will take strength from it xxxxx

  • Thank you. I put on a brave face to all the family and friends.

    My mum and dad are unaware that the cancer had returned. I can't bear to tell them. My mum gets very upset and I would be the same if it was one if my girls. Keeping it from them is stressful and I may have to tell them soon as the chemo us making me ill.

    Thanks for your reply. It is a comfort x

  • Dear Loretta

    You are no longer alone as you can see. You have now been surrounded by amazing , strong , kind and helpful women reaching out to you. Finding this site has to be the best thing that happened since I was diagnosed with PPC in 2011. I was finally able to share my worries. You will always find aoneone here who has an answer

  • Thank you. I think that is what I need most. Someone to share my worries with. My family and friends are wonderful but I don't want to burden them and cause them more stress than they are already going through.

    Thanks you to everyone for the support and sharing of feelings xx

  • Bless you! We all know what you are going through, we are all here for you and really are the only ones who understand how it is.

    One day at a time, lots of pampering for you and you musnt feel guilty about your children or your parents, I'm sure you have been there for them many times, now this is your time. Be good to your body

    Much love Jackie O xx

  • Thank you Jackie. I know all you say is true. It is just getting in into my thick head xx

    Thanks for replying it is a comfort. Pampering sounds good xx

  • Talk to the wonderful people here. They offer advice, are thoughtful and caring and understand what you are going through. I was diagnosed with Stage 3c OVCA in January 2016, have had chemo, debulking and more chemo when a carcinosarcoma was discovered and the ladies here have been wonderful. Try not to worry. Devote your energy to healing your body in an atmosphere of peace and calm. Take care. Xxx

  • Thank you. I hope you keep well. Sending you all best wishes. It is a horrid illness but can be beaten as so many ladies on this site show. I am reassured x

  • And of course my post went too soon as often happens to me. Sorry about that and the typos ! I really wanted to let you know that you are not alone. I'm sure everyone understands your not wanting to worry family. We have all been there., I just read a great reply to you from a daughter Allo. It's good to have an insight from a family point of view. Also I only discovered this website 2years ago and it has transformed my life. Up to that I felt so isolated and thought there was nobody like me around.

    I wish you all the best for the future. Keep in touch

    XXX

  • Thank you. It was really good to hear from a daughters point of view. It is so hard to see things from the prospective if others.

    I am so glad I found this site. I had so many lovely replies from others in the same boat. I will try to reply to them all. I feel less isolated already xx

  • Hi my name is tracy,im also quiet new to here but is comfort to hear all have same concers,I was stage 3c in feb 2015,i had an histerectomy in 2011 but left the ovaries and tubes.it had spread to my omentum,had six cycles of chemo ended last sept,i see the hospital every 3 months for bloods and review,but my recent bloods came back very raised,so doing in 6 weeks rather than 12weeks,i feel well but thw worry is awfull,im divorced of 10years gladly! but as you say dont want to place your worry on family,my children have grown up but very supportive,you are doing so well to cope with so much going on,hope the following chemo carry on as well,do feel positive helps but thats difficult when scared. xxx

  • Thank you. The worry never goes away. Sometimes I think it is the worst part of all this. I hope you continue to stay well. Thanks again x

  • There is little to add to all the support in the previous posts. What I have learned on this journey is that coping with cancer has a huge psychological impact that is very underestimated .Our health care prof are time strapped and drugs and surgery are what they reach for . Coping is personal and a different experience for all.i have decided to go to Councelling after treatment .In the meantime as I struggle through Chemo I focus on what I can do to help my self. Nutrition, rest , exercise , avoiding stress etc.i have an old mantra control what I can and leave the rest. You have to be a little selfish to fight this battle and how people react is their business ...try not to take it on board.you have enough on your plate.

  • Thank you. You are so right I know. I try to eat healthily, rest when I'm tired and get out when I can. I was feeling so positive until I found the cancer was back again in August. Now I'm back on the chemo and feeling rough again.

    I will get through it and it now I have found this site I feel less isolated.

    Thanks xx

  • Hi Loretta

    I too am fairly new to this forum as I have PPC stage 3, diagnosed January of 2016. It is a rare cancer and frankly, I was scared to death until I found this wonderful, caring, and knowledgeable group of women who have been there and done that. I previously had breast cancer in 2007 and ovarian in 2008, enjoying my life and cancer free for 8 years until this diagnosis. I will not lie, the cancer treatments are dreadful and abdominal pain with swelling is horrid. I found walking while pushing on my abdomen very helpful and lying down as flat as possible with a pillow over my belly applying pressure very helpful in easing the pain along with pain meds helped not only physically but mentally too. Having some relief even for 4-6 hours will help your spirits. Just remember, this will pass. My son and daughter have been wonderful. My daughter was almost attached to my hip! I spent many a night crying and feeling sorry for myself but that's not going to help anyone. Don't feel guilty, it helps them to not feel helpless and feel they are somewhat in control of this illness, ok? Try to get outside and breath some fresh air even if you're just sitting in a chair. Reach out to us if you need anything even just to vent frustration. Feel good.

  • Thank you. You are so brave. I also walk around pressing onto my abdomen. It does help. I have been prescribed oramorph today for the pain and will take a dose at bedtime. I find I cannot get comfy lying down. My tummy feels as if it's pulling.

    Thanks for taking the time to reply. I hope you keep well and the cancer goes away xx

  • Try lying down on your side using a soft pillow as a wedge. It helped me tremendously.

  • Thank you. I bought one of those a V shaped pillows and I put my head of one side and my tummy on the other. It helps the side on the pillow. I then press my hand on the other side. It does help me get comfy. Sometimes I sleep on the sofa downstairs as it helps support my tum. Tried the morphine last night. Helped me sleep. Seeing oncologist this morning at 9.20am.

    Lovely to hear from you. Thanks for your help and support x

  • It is my pleasure. I'm glad the pillow helps. Hope everything goes well with the oncologist. I myself have a ct scan tomorrow and hoping for the best.

  • Good luck. Hope the scan result is good. Waiting for the result is stressful so hope all goes well x

  • Hi. I was diagnosed July 2015. Stage 4. One massive shock. Had chemo and nearly finished 12 treatments of avastin. Have learnt to just take one day at a time. Not worrying about future. As anything could happen. ,but it takes time. Like you and many others we don't like to worry family. This forum is great for support. Could you tell me how stoma reversal was and how you coped as this is something I may have to face after next scan. Look after yourself x

  • I hated the stoma. It was sore and frequently leaked. I could not wait to have it reversed.

    After 14 month I got a date for the surgery and then like you I got nervous after reading the stuff they gave me at the hospital. I decided to go ahead as my chemo had finished and I felt well enough to go ahead.

    I was in hospital for 4 days. The surgery went fine but could not go home until I had a bowel movement. The first couple of poos were pretty painful but with laxatives I managed to go ok.

    The first few weeks I could not venture far from the toilet. I would feel I wanted to go but just sat there and nothing. Other times I had to fly up the stairs and only just made it. I got to know where all the decent toilets were in our area.

    I dreaded having an accident but it never happened.

    I have no regrets having the reversal but my bowels took a while to get back to normal. I had surgery again in July and was told I might need another ileostomy. I was gutted at the idea. Luckily I did not need one.

    I still feel like Mrs Toilet as I spend far too much time in there. A good book helps.

    Good luck for your reversal. Hope it all goes well for you.

  • Hi Loretta thank you for your reply. Will let you know in due course what happens. Will just be happy if scan is Ned but your info has been helpful best wishes x

  • I hope your scan will be clear. Fingers and everything crossed. Had a PIC line fitted today. Took four attempts. I was there for 5 hours. It kept going into my neck !! At least it is in place now ready for chemo on Friday. Keep well and pamper yourself xx

  • Hi. Would love to know how the stoma reversal was for you. I am anticipating my reversal but also nervous about it.

    Thanks so much.

  • I hated the stoma. It was sore and frequently leaked. I could not wait to have it reversed.

    After 14 month I got a date for the surgery and then like you I got nervous after reading the stuff they gave me at the hospital. I decided to go ahead as my chemo had finished and I felt well enough to go ahead.

    I was in hospital for 4 days. The surgery went fine but could not go home until I had a bowel movement. The first couple of poos were pretty painful but with laxatives I managed to go ok.

    The first few weeks I could not venture far from the toilet. I would feel I wanted to go but just sat there and nothing. Other times I had to fly up the stairs and only just made it. I got to know where all the decent toilets were in our area.

    I dreaded having an accident but it never happened.

    I have no regrets having the reversal but my bowels took a while to get back to normal. I had surgery again in July and was told I might need another ileostomy. I was gutted at the idea. Luckily I did not need one.

    I still feel like Mrs Toilet as I spend far too much time in there. A good book helps.

    Good luck for your reversal. Hope it all goes well for you.

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