Feeling scared and unsettled after my sister's diagnosis

Hi all,

At the end of November 2012 my older sister was diagnosed with stage 3 OC. it has come as a huge shock to all my family and we are supporting my sister in different ways and stay positive. Sometimes I'm personally finding really difficult to be positive and am really frightened and worried about my sister. She is due to start aggressive chemo next week for 3 months then surgery then chemo again. I have read alot on My Ovacome and know there are some really incredible women here. In many ways I feel silly for writing about how I am dealing with this as I know so many of you are dealing with bigger issues day in and day out. Just feeling out of my depth and useless really :( trying to be supportive without smothering!

Any advice is welcomed xxx

21 Replies

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  • Hi little sis! I am sure that by being up-beat, positive and reassuring, you will be a great support to your big sis. My sister was worried and told me so. However she never said what her fears were...we all know the deep fears, we don't need to talk about them! See if you can find practical ways to help, maybe a meal prepared for when she feels like eating, or shopping collected, if you live near....it all depends on where you both live, it also depends on your family situations etc etc, You will think of a way to help her, I am sure. Be up-beat, as I am sure you will be. If you know about this site, you know we are up-beat, positive, suppotive and sometimes feisty. I am sure you and your sister will fit this mould! Good. Luck

    Love Wendy xx

  • Hi Wendy,

    Thank you so much for your reply. You are right we all know the fears and don't need to talk about them! Your advice is appreciated. :) we do try to add humour and I know some people would it strange but we have to be 'normal'!. For my Christmas present she is taking me to her first chemo! I live about half an hour away from her and try to visit weekly at least and more when needed. I know she isn't ready to join My Ovacome but felt I needed to just so I could learn more so I can help her. So time to hold onto positivity and will allow for some blips along the journey! Thank you and love xxx

  • Hello.

    I think once the chemo starts, it will become clearer to you how to help. Getting through the first cycle, mapping out the side effects and finding ways of alleviating them is one of the first jobs your sister will face. Having this to focus on is often experienced as a positive thing. Yes, the standard chemo for OvCa (Carboplatin + Taxol) is aggressive but the side effects are experienced differently and some women find them easier to deal with than others. Once one cycle has gone through, how your sister is reacting will be clearer and you should be able to identify ways in which you can offer practical help. I'm sure you will get lots of brilliant advice from other women on this forum. For me, I want to suggest some simple things, like making sure she has shopping in for the 5 days after treatment, satisfying any cravings she may have for particular drinks and food, getting out for strolls and fresh air - these are all 'little' things that can make a big difference.

    Hope this helps!

  • Thank you Bellabee, I guess I'm floundering as it is just a waiting game so far. Just awful knowing that she is in pain daily as well as battling through this. Each process is a new learning cycle. I am off work next week and plan to help as much as I can. And practical tips help too! Xxx

  • Please don't feel silly about writing about your feelings,this horrible disease affects the whole family not just your sister, she is privileged to have a caring sister like you, I am sure she knows what you are feeling already, Wendy has given good advice I don't think I can add anything to that, she will need your loving support and she has already got that, please feel free to share your experience as you go along, it is a two way thing for all of us and is valuable to those of us that have OC for us to understand what our own loved one's are feeling too. Sending you my very best wishes and love x G x

  • Thank you Gwyn, we are just trying to work through this and everyone is dealing with it in their own way. I guess as family our instincts would be to bubblewrap our loved ones to keep them safe! I guess this time of year everything is magnified too. I think with Monday's chemo looming I need to focus on the beginning of her treatment. I will stay in touch on MO and update as and when possible. Love xxx

  • Speaking as a "little sis" I know how much help my "big sis"has been to me. She has been over to do my ironing, cooked meals, has taken my daughter up to the Lake District with them for a holiday,and had daughter over for a few days when I had chemo. All of this was without making us feel awkward. She has also been at the end of the phone, especially for texting when I was stuck in hospital this year. Really what I'm trying to say is I'm sure that whatever you do, she will appreciate it! I know I have all my sister's support.

    Best wishes and love

    Chris

  • Thank you Chris, I guess I just have to stop second guessing myself and just carry on. After many years of nagging my sister has now learnt how to text after a lesson from my 10 yr old daughter. This has helped as we are beginning to text each other now which really helps. love to you xx

  • Dear Tind

    I'm really sorry to hear of your sister's diagnosis. I found I had Stage 3 Ovarian Cancer nearly 2 years ago and I remember how it was for my family. I just wanted to carry on as usual and my two daughters wanted to go into overdrive and talk about it. I know they spoke to Macmillan and found that very helpful and reassuring. I was like your family and found plenty to laugh and joke about. We're all told the disease can be 'managed' and not 'cured' so I really wanted to make the most of every moment whilst it remained 'manageable'. If it's of any reassurance I've had a wonderful two years and once I'd had some surgery and was comfortable again the disease didn't impact much on my life except to bring everything into a sharper focus and make it seem better and more precious than before.

    I do recall being very worried about having chemotherapy so it's good you're going along with your sister. The hospital staff will be very reassuring and will explain everything so once she's started the course it all becomes rather hum-drum and you have to take in something to amuse yourself as you can be there quite a long time. I took in an I-Pad, magazines, water to drink and a radio and earphones. It may be your sister will be happy to spend some of the time quietly on her own as it can be quite tiring if you feel you have to be chatty all day. Equally you may need her to find something to eat. My local hospital didn't provide food or drink.

    One thing I did notice is that you said your sister is in pain. I was too and I didn't think to go back to the GP to explain how bad it was until my daughters promoted me to do so. Perhaps she could have some stronger painkillers to make her feel more comfortable? Another tiny suggestion is not to read too much on the internet at this stage, or if you do, don't get worried about it. The statistics are several years out of date and each one of us is unique in the way we'll react to chemotherapy and to managing the disease. My experience of oncologists is that they can be rather pessimistic people and they get almost nervous if you're too upbeat.

    It's good you've joined this site. You'll find it a great support. Don't under-estimate the pain and distress you're undergoing. Sometimes I think it's worse for those who love us - particularly at this moment in time for you when there's not really much you can do of a practical nature to help.

    The suggestions above of ways to help are spot-on. Also once your sister has surgery she has to rest for 6 weeks and this means no lifting - not even a kettle - so you might be able to organise a rota in order that she's looked after hand and foot during this time.

    Keep posting and let us know how you get on. Perhaps we can welcome your sister on the site too when she's ready.

    love Annie xx

  • Thank you Annie for your help and advice. As you said everybody has their way of dealing with this. I will talk about it with my sister if she wants to otherwise we just try carry on as we normally would. This has brought us closer together again so that's a positive! My mum is finding it very difficult but again I can see why this is so hard for her.

    The big step with pain relief has been my sister saying she is pain. My brother in law is great with her, meals, resting etc but we have talked about my sister being open with us when she struggling-we don't want her just battling with things that can be dealt with.

    Good advice re the Internet! The main reason I came to MO was because its personal and not about just figures. The support on here is amazing :) with love xxx

  • Your sister sounds a bit like me - I never admit to being worried about anything or in pain. Just as well you know each other well as you can help her recognise symptoms and seek help.

    love Annie

  • Dear super-sister

    Driving back from my chemo session last night I was feeling quite emotional, and I thanked my husband again for all he'd done and how wonderful he was and still is being through all this awfulness. He laughed it off and said "it's you going through it, not me, I wish it wasn't" I just couldn't disagree with him more. This OC thing is something whole families go through. Sisters, mothers, daughters, wives, aunts or whatever the relationship there is a ripple effect of shock, grief, panic, worry plus all the practical things to think about. You ARE as much a part of this as your sister, and I applaud so much your initiative and desire to prepare to help - joining us here is a super step, and one which will really help your sister even one step removed until she maybe joins us as well. You are doing exactly what you should and will be a huge support and strength to her.

    On pain - agree with Annie. Get to GP and get a pain solution if not seeing oncologist for a week or so- you should find the doc is happy to prescribe a good basic combination regime for pro tem, like slow release diclofenac and paracetamol at least, anti cramping if hats adding to the discomfort bowel wise, etc. Her oncologist may then add a far stronger one or two as either regular boosters ir to have as needed. Standard treatment for this is usually the first 3 cycles of carboplatin/taxol before op mid way so there will be a few months to manage pain, no point whatsoever in your sister suffering. And VERY importantly: get application form for NHS prescription charge exemption from surgery and signed quickly - your sister will have lots of meds prescribed soon, they really really add up so get *everything* on prescription even things you would usually get over the counter like paracetamol etc.

    Hope another helpful perspective and, again, well done

    Love

    Sue xxx

  • Dear Tind, your story kind of mimics my own! You sound like my own "little sister" who was always there for me after my diagnosis last December. She accompanied me to every consultation, chemo session and even cleaned my house & did my washing because everything became neglected in the weeks leading up to my diagnosis. She scoured the internet for information on OvCa, joined forums, researched supplements and more. I know you will have a "super power" connection with your sister and will instinctively know what she would find helpful and also know when she needs "space". Does your sister live alone?

    She is so lucky to have you looking out for her. Take Care.xx

  • Hi, thanks blue100 for replying-as daft as it helps to know that someone else is feeling/going through the same. I try to help as much as possible. I am 41 and my big sis is 52. She has 2 kids in their 20s who are great with their positivity. They live away from home but are home at wkds. My bro in law is with my sis and they also work together. He has been incredible and do know she is being looked after by him. All of us have to help to pull through this. I just try to make sure I'm around and will go to appointments sometimes for my sis and sometimes for myself-the more I know the more I can help?

    Again thank you for your response-here's to sisters :)

    Love xxx

  • Dear Tind

    I also had Stage 3c OC and the treatment was exactly the same as your sisters. I've been in remission for just over 11 months.

    I had tremendous support from both my younger sisters. One is many miles away, near Edinburgh but the youngest lves near me in London. My husband covered the every day stuff and my sister would bring me the little extras. (With the best will in the world, I wouldn't feel confident asking my husband to buy me the exact shade of foundation that I use.) She would bring me books, magazines and little gifts, earrings for example and paint my nails. Before I started treatment, I felt subhuman because of the enormous alien I was carrying in my abdomen and all the little girlie treats helped. she also helped me choose a dress to get married in - which I did three days before my first chemo.

    My other sister would contact me most days usually by text as she didn't want to disturb me if I was resting. She would also send me books and othe little gifts through the post.

    Have to put in a word for my big brothers too. My eldest brother's wife had been diagnosed with early stage breast cancer just a few weeks before I was diagnosed and he cried on the phone when my sister told him about me. He made the journey from Liverpool within a few days with flowers and some old childhood photos. My other brother in Leeds (we are spread around the UK) visited me several times with his wife and grown up daughter and we had a great time with a few drinks, snacks and chat.

    My sister-in-law was successfully treated as was I and in July we hired a place in the Yorkshire Dales for a family reunion. That included all my brothers and sisters and their wives and husbands eight out of the nine nephews and nieces (one was working in Chile) my great niece and my stepson. We all had a wonderful time of course.

    It is a hard thing to go through and I'm sending you my very best wishes. I hope you will keep us up to date with what is happening with your sister.

    Much love

    Mary xxx

  • Dear Mary,

    Firstly pleased that you are now in remission-:) our family is slightly scattered too. My parents, brother and sis in law live in Lancashire and us two sisters live about 200 miles in the south. Luckily we are half an hour way from each other.

    I'm glad the girly things helped, my sister has needed nightshirts since her laparoscopy so in the last few weeks I covered the whole nightwear stock in every store. It keeps me occupied too and makes me feel like I'm doing something constructive.

    Your family has gone through a lot in the last year and pleased that you all had a great family get together. We had one in September this mainly because our parents are elderly and have been really unwell over the last 2 yrs. ironically little did we know at the time that my sister had OC, I just thought she was looking tired with work etc.

    I'm now going to focus on helping through this and will keep you posted with how things are going. Thank you for you help.

    Love xxx

  • I also was diagnosed with oc stage 3c 2009 and am still being managed. I think all the advice given here is wonderful. I only wish I had known about this site a long time ago. Annie's treatment at the beginning was the same as mine.It is good advice to have things to occupy you while waiting for your chemo sometimes it can become a long wait. I try to get early appointments even so I am sure everyone tries to work it out.All I can say be ready for a long wait and if if shorter thats a bonus.Its good that you are supporting your sister as we all need your support.

    Good luck

    Barbara

  • Dear Barbara,

    This site is great! So much learn and share and the positivity is so helpful. I will grab iPad etc to take on Monday with us. Good advice with the appointments and we will need to think about this, as my work will let me attend some and this will help.

    Look after yourself Barbara.

    Love xx

  • As a little sister, I am quite a few years younger than my sister, I have to say you do not realise how important family is when we are so busy getting on with life, then somehting happens and brings it into focus. My sister hadn't spoken to me since my Mum passed away in 2009, we were at my Dad's funeral in 2010 which she arranged but barely spoke then. I contacted her after my first operation to tell her my diagnosis and again after the second just by email. Then she asked if I would ring her, which I did, and have spoken once more on the phone, I said I would call once I've had my first chemo treatment, there has been no suggestion of meeting up but she sent me a Christmas card.

    Being there for her is so important. You should also share your feelings too, I wanted to know what my family particularly how my children were feeling so I could talk more openly, it made it easier to share for me. I know we are all different but the initial it'll be alright and my nodding was accompanied by my head crying but what if it isn't! Positivity is good but so is honesty with diplomacy.

    Wishing you and your sister well

    LA

  • Dear Tind

    I have some idea of what you are going through. I am a little sister. My sister was diagnosed with 2C OC in July 2011. We weren't very close. I hadn't spoken to her for years before her diagnosis for various reasons. Obviously, the diagnosis was an immense shock, particularly as she was 40 when she was diagnosed and because there is absolutely no history of cancer in our family. Since then, after her debulking op, I drove her to and from every chemo appointment. She moved in with me for 5 months. It was extremely stressful but we got through it.

    She doesn't seem able to/doesn't want to do any research on the disease. In addition, she finds it difficult to ask for help, I think she sees it as a sign of weakness. My sister is not married, hasn't worked for 13 years and lives at home with my parents. She doesn't have any friends who live nearby. Accordingly, I have practically had to drag her through this awful process. She has a lot of personal issues which she has always been unwilling to face up to. She should have had some form of counselling a while ago but refuses to do so, even now with everything that has happened.

    A lot of people praise me for all that I have done to help her but deep down inside, I wish that there was so one else to help her so that it wouldn't fall to me every time. She is on weekly taxol now after a recurrence and again, I have had to change my plans etc to fit around her. I was 32 when she was diagnosed and I will be 35 this year. The time as gone really fast. I think that what I am trying to say is that help your sister all you can, but please exercise some self preservation as well. You need to look after yourself as well. Keep looking on this site as it really is amazing and it has given me a lot of strength.

    Good luck xxxx

  • Dear Tind, super sister,

    when i was fist diagnosed 21/2 years ago with what they thought was stage 3 but since have discovered it is PPC, it was all very terrifying for my family and myself, especially one of my daughters, I certainly couldnt have coped with "tea and sympathy" or everyone going to pieces around me because I am a stubborn person but I had to realise that I was not the only one needing support. its great that you are going to your sisters first chemo, I took each of my daughters and two of my sisters as well as my husband - not for the whole day but just to let them see that Ward 15 is not a scarey place. It did help them immensely and the humourous way we spoke to each other raised a few laughs in the ward as well.

    My family waited to see how they could help instead of imposing their wishes on me which was fantastic. I loved getting copious amounts of flowers, I enjoyed various Spa days and i also made use of the local Cancer Support Organisation which as well as providing the opportunity to speak to people going through the mill at the same time, they also provided complementary therapies - reiki, reflexology, aromatherapy etc etc, these were great and helped me to relax and I have made a lot of friends. These opportunities were available to friends and family members, I felt good knowing that family members were getting support as well. Perhaps you have such an organisation near you, but again your sister will have to be in the right frame of mind to walk through the door for the first time but I can highly recommend getting in touch with such a organisation.

    One thing which gave my husband sleepless nights was my wish to go off alone for a few days (thank goodness for club 55) I would book a hotel somewhere in Scotland and go by train, I once went with one of my sisters but she wanted to be doing things whereas I just wanted the peace and quiet - perhaps I needed my batteries charged from the treadmill of clinics/treatments etc.

    We are all different and cope with this journey in different ways but at the end of the day you need to look after yourself as well. Be there for your sister and help when she needs it but dont try to smother her would be my advice.

    Good Luck

    xxx

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