Feel isolated and uncertain

edited November 2019 in Welcome & Orientation

Hello my name is sue. I am 56. I Was diagnosed with stage 4 metastatic ovarian cancer in July and had 10 hour surgery lower and upper abdomen. 3 weeks hospital, infected collections and then lung drain. Big zipper scar but my surgeon was fantastic, a marvellous woman.


Now half way through 18 week chemo and loathing what it does to my body, bowel inflammation, hair loss, stomach cramping. All pervasive e haustion. Feel very out of control and not much continuity with oncologist so far due to holidays so nobody really has oversight of my case. I need to get that back on track but I also need to reach out to fellow sufferers to see if they too feel this powerlessness and confusion. Am on carboplatin and taxol.


Any advice on Sydney groups or how one van sit down with someone and have a decent conversation would be very much appreciated.


Thank you

Tara16CarolW

Comments

  • Hi Suet, you have certainly been through the mill, I’m glad the operation and your gynecologist oncologist was fantastic I feel I owe my life to mine. You are not alone on how you feel it is perfectly normal. The chemo’s are horrendous but they do there job. I suggest you talk to your local GP and a referral to a psychologist who deals with gynecology cancers they are subsidised by Medicare. You can also access support through the Cancer Council Cancer Connect program where you will be able to talk to another woman who has been through OC.  The Cancer Council also runs other programs to help you feel better within yourself. However with all the help available you can feel isolated. But I found the weeks did pass quickly I took a friend with me when I was having my treatment and remember that the Chemo nurses also have a wealth of knowledge talk to them as well. I wish you well, hope this info helps you.?

    SuetCarolW
  • Hi Suet,

    I empathise with your situation. I personally have been fighting this disease for 25 years on 11/3/20. I know that feeling of being totally out of control and the frustration of no being able to get a straight answer from anyone. As far as the treatments they are invasive and not at all pleasant. The side affects hair loss, cramping, bowl problems ect. will all subside once the treatment is completed. Your whole body is being poisoned to kill the cancer cells. Sometimes Oncologists can be very aloof. Try this when you next have an appointment ring and check if the oncologist will be there. Then arrive at your appointment with the list of questions that you want to ask. I find it hard to remember what I was going to ask and after the oncologist has left I remember and get really annoyed because I forgot to ask the questions.

    Throughout the years I have learnt a few tricks that I use to help keep my going through the difficult times. I play a game with myself called the glad game. I adopted this from the Pollyanna movie. When I'm really down and finding it hard to deal with the day I find something to be glad about it may be something like I'm glad that I have 2 legs that work. or I'm glad I have a brain that works and allows me to make a cup of tea. I use this when I'm in the darkness and don't seem to be able to feel the light. It brings me back and reminds me of the hope that I have and helps me put a smile back in place of my frown and adds a little light.

    I have kept working throughout the treatments over the years as I felt that for me it gave me normality. I don't let go of control of anything that I can do for myself. I'm passionate about this.

    Contact Look Good Feel Better 02 8569 1829. They conduct workshops for ladies with cancer. I have attended a couple of workshops and find them very informative. You will learn lots of tricks to help you when you apply make up, scarf ideas and you will get a great pack of makeup put together just for you. The products are all top quality from all the top makeup companies all donated for us. This was a very uplifting experience for me.

    If you are able to get out of the house and go for a walk or to you happy place it will help push away the depression and isolation that we sometimes feel. Maybe give yourself a little treat after treatment or a few days later if you can manage it. I have found it's important to be kind and to love yourself with all these changes happening that you feel you have absolutely no control over.

    I have used both the drugs you are on over the years they are very good at fighting Ovarian Cancer.

    Also give the NSW Cancer Council a call they may be able to offer some help and will help you with loan wigs and scarfs all free 13 11 20. Ovarian Cancer Australia may be able to guide you to a support group closer to you to join.

    I also have a lot of coloring books time just disappears when I have my head stuck in a book miles away and before I know it time to go. I have also learnt to play Ukulele and with the practice and learning songs it all keeps me very busy. I find keeping my mind active is very beneficial for keeping the darkness at bay.

    I sometimes say to myself or out loud "Cancer just picked a fight with the wrong girl" i'm gonna kick it's ........you can fill in the words what ever make you comfortable.

    Hoping I have helped you a little Suet,

    Kind Regards

    Michelle xx

    leeparSuetCarolW
  • Hi Suet and everyone,

    I have a fabulous oncologist on Sunshine Coast, thank heavens, and I think the answers are often vague because there is just bugger all information on this crappy disease because there hasn't been the research yet. However, I always show up to my appointments/treatments with a list of questions on my phone and ask him point blank and keep asking until I get an answer. He is getting used to me. :) I'm very proactive because, hey, it's my body and my life! But he is also very honest in admitting when he just doesn't know the answer which, unfortunately for me, is a lot of the time because I have all kinds of other complications.

    Anyway, hope this helps. BE BOLD is my message. Even obnoxious. grin

    Robyn

    SuetLynnatCamelotBethws76CarolW
  • Hello Sue T

    I’m in Sydney and am grappling with recurrent ovarian cancer. It can be very isolating that’s for sure! My name is also Sue! ❤️

    SuetJenjill
  • Hello,

    My name is Irina , and I a have also been diagnosed with ovarian cancer , stage 2, 03/19.I am in Melbourne. I am 47 years old

    Currently I am going through a chemo, 3 more treatments. I am petrified with the corona virus spread and what does that mean for us with a lower immune system.They have postponed my last chemo treatment for a week due to my lower white cells's levels of 3.1,which never happened before. Dis something like this happen to some of you?

    Sue T, how long have you been clean before the cancer recurred again?

  • Hi Irina,

    The reason that your chemo treatment has been postponed is that your white cells are not repairing themselves and with delaying your treatment giving them a better chance. The oncology nurses and your Oncologist might be worried you could get Neutropenia Fever, which is not very nice, I had it early on in my treatment. I understand totally your fear at the moment with the coronavirus. You will just need to do what we are all doing and stay at home which you were probably semi doing anyway. You will be guided by your oncology nurses who are all properly gowned and wearing the appropriate masks and PPE gear. I was diagnosed with Stage 3c OC in 2013 and are now entering my 7th years cancer free. Take one day at a time your nearly finished your treatment and that is a great feeling and something to celebrate. If your really concerned please talk to your Oncologist or Oncology nurses that's what they are there for, it also takes away the fears that we all have going through Chemotherapy.

    Suet
  • Hi Sue,


    I found talking to the hospital Oncologist helped. Also being proactive and availing yourself of any suitable drug trials. In November 2013 I was diagnosed with stage 4 Ovarian Cancer at 54 years of age. The tumour was on my left ovary, cancer nodules on my liver, cancer cells in my right lung with 1.5 litres of fluid. CA125 was 900. So I had a full hysterectomy, momentum removed and fluid drained from the right lung prior to surgery. Following this I had Carboplatin and paclitaxel chemotherapy for 6 months. This all worked well and put me into remission. 3 weeks later I managed to get on a drug trial of a parp inhibitor. This has kept me in remission. I carry both BRCA 1 & 2 mutated gene. However drug therapy can work for other ladies who don't have the BRCA genes. If you have a strong family history I would highly recommend you have genetic testing. Your GP can give you a referral to the genetic clinic. It is just a simple blood test and paid through Medicare if your family history is cancer affected.

    The main advice I will give is to stay right away from negative people!!! This would send me into depression for the day in the early stages of the disease by comments people would make. As the psychologist said it is a fear within themselves which makes people avoid you or say I hope you are going to be alright in a stern manner. Remember you are an individual so do not🙂 dwell on statistics. That can be a downer and you may be in the good part of the stats!!!!! Live in the moment and do not stress about the past or the future. Today is to be enjoyed and we can all only live one day at a time. Practice mindfulness and meditation . Do something nice for self care each day like a walk, having a coffee and virtual catch up with a friend on face time, reading a book, watching a funny show or even cooking a favourite recipe. We are all on this journey together and here to support one another.

    RickySuetnurse81JenjillSusanmci
  • I am sorry I have been away from this forum for a while and have just read all the comforting and supportive messages from everyone. You are all so fantastic xxx

    As at today, my CA 125 is at 9. From 180. I am amazed. I am cherishing every day. The journey started last July and I am so very grateful to you all


    Michelle1811
  • Hi Suet.

    Great news for you. You are in remission. Now go out and live your best life.

    This is your story now go and make it the best story you can.

    Michelle xx












    Congratulation what a fantastic result xx

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