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heartbroken but getting there

sharr
Posts: 3
Joined: Oct 2005

I am writing this from Ireland, and I am thrilled to have found this website because I have read lots of messages on the discussion board and its great to see I am not alone in the way I am feeling. To all the ladies out there who are fighting ovarian cancer I send a big huge hug as you all have great courage to be facing this horrible disease.

To all the people caring for woman with ovarian cancer I send you my best wishes as it takes great grit, determination, strength and courage to care for a loved one with such a terrible disease. I too was a carer for my own mam and I know only too well how it throws a person in to emotional turmoil as all the time you wish for the person to get better but when they start to suffer a lot you start to pray for god to take them as it gets to hard to see them go through all they do. I do think to be a carer for some one is exceptionally special as it creates a very special bond between the carer and the person who is ill plus it makes one appreciate life so much more and learnt to not take even the smallest thing for granted.

I am 30 and lost my mam in august this year, its only 9 weeks since she passed away. She died from ovarian cancer at the age of 59 but she fought so so bravely that I want to share her story with people. I am an only girl with one brother and my dad and so the bond between my mother and myself was very very close and special, not only was she my mam, she was my advisor over the years, my very best pal, my most treasured friend.

In September 2003 I was in America on holidays and when I came back to Ireland I noticed my mam had lost weight, I mentioned this to her but she said not to worry that she felt fine. Come Nov 2003 she was complaining of small cramps in her pelvis and after much persuasion she went to see her GP. Her GP sent her for scan and it appeared that everything was ok. Christmas 2003 arrived and we noticed mams abdomen looked swollen, she put it down to all the eating over the festive period but to me it looked worrying. After the Christmas I went back to my home, which is 4 hours away from my mams, and went back to work.

While on the phone to my mam in early Jan 2004, mam said her tummy was getting bigger and bigger so much so that she looked 7-8 months pregnant so I advised her to go to the doc and she did. The doc kept saying that it was her bowel and not to worry it would pass!!! However this was not the case, I drove to my mams one weekend and I could not believe the size of her, I quickly rang the doc and we had her shifted to hospital, within hours she was diagnosed with ovarian cancer, at that point we did not know what stage it was at, but deep down I knew in my heart it was not looking good for her. I will never ever forget the look of sadness and fear on my poor mams face when the doctor diagnosed her with cancer, all I wanted to do was pick her up and hug her until she got better, she looked so vulnerable. Here was a woman who was normally so strong reduced to utter fear by the words,ovarian cancer.

She was kept in hospital and had surgery a few days later and had her ovaries, womb, tubes, omentum all removed, luckily no lymph nodes needed removing nor did her bowel. The biggest fear she had with the operation was that she would have to have a colostomy bag, thankfully she did not need it. She amazed us all after her surgery, she was out sitting in a chair 3 days after it and was doing so well the oncologist decided to start her chemo 2 weeks after that.

The oncologist was brilliant, he sat us all down and explained what would be happening and allowed us ask what ever questions we wanted. The unfortunate thing was that the fluid that had built up in mams abdomen had passed in to her lungs causing the cancer to spread to there but the oncologist was hopeful that the chemo would deplete what was in the lungs. The chemo mam had was carbo platinum and taxol.she had it every 3rd week from Feb 04 until march 04.

What amazed me was how strong mam had become since the initial diagnosis, she was determined to not let the cancer beat her. She called the cancer gremlins and always said'these gremlins will not get the better of me'and kept saying that through out her course of chemo treatments. Mam was discharged 3 weeks after the operation and started her chemo the following week.

Before mam was discharged from the hospital myself, my brother and my dad met with the oncologist to ask him what the prognosis was, he was very frank and said anything from 4- 12 months as mams ovarian cancer was advanced stage 4. We all were stunned in to a silence that seemed to last an eternity but then quickly pulled ourselves together as mam needed us more now than ever before. We decided to have a family meeting with all mams brothers and sisters living in Ireland to fill them in on everything and also to see what support they could give us. That night was very very hard, watching her brothers and sisters so close to her reduced to tears over it all but they were fantastic the offers of help came quick and fast and so we were able to set up a rota system for looking after mam. We also had organize for the hospice cancer home care team to link in with mam and the family once a week in order for mam to build a relationship with them, the oncologist had told us it was worth while doing as they may be a chance that mam would end her days in the hospice depending on how sever things got with the cancer and the level of care she required.

When bringing her home I could not believe how tiny she looked, she had swollen so much that after the operation when all the fluid was removed she looked like a small child she had lost so much weight. When we got her home we sat down to discuss how we would care for her through out this. What we decided was that the Tuesdays mam was having her chemo dad would take that day of plus the Thursday and Friday after it of, I would take the week after each chemo of and spend it with her (this was advised by the oncologist) and, mams sisters and my brother would slot in the other days. It all worked brilliantly, we also gave mam her own space as there was so so much going on in her own mind about this and so many questions that she wanted answers too. The one thing she did not want to know was how long she had, she felt that she was not ready for it plus she wasnot giving up easily, she was in for the long haul battling this savage illness.

Through out her chemo she was fantastic, she developed a great sense of openness about the cancer and talked freely about her death, as she knew at some stage it would happen, and talked about a number of things she would like to do while she was reasonably well enough to do them. The hardest of all throughout her chemo was her losing her hair; she loved her hair and was distraught at the thought of loosing it. I suggested she get her head shaved that when it did fall out it might not be so bad. She got this done and yes it helped but for any woman losing her hair is soul destroying and I remember all to well sitting on the side of my mams bed holding her while she cried and cried and cried about losing her wonderful hair. All I could do was hold her and tell her that it would grow back and would look even better when it did. The other great thing about her was that she forced herself to eat during the chemo and this really stood to her.

I would be lying if I said I found this all easy to deal with, I had many emotions running around inside myself also but never showed them to mam as I was determined to stay strong for her. My partner was fantastic through out it all, I had only met him 11 months before mam got diagnosed but I knew he was my main man and when mam got diagnosed we decided to move in together as he wanted to be their to support me though out the nights I was away from her. I was traveling up to my mams every third week to look after her through out her chemo and up at weekends in between and every time I had to say good bye I kept wondering would it be the last time, the emotional turmoil of this was very very hard.

When mam finished her chemo in June 04 her tumor marker was very very low, it had been up in the thousands to start of with and so the chemo had worked, it had brought it down to a level that was good. In July 04 however her lungs started to cause problem so the doctors decided that they would drain the fluid from one of them and put a powder into it to soak whatever fluid was left. Thankfully this procedure worked and worked very very well for mam

After this procedure, mam was very very very sore and it was at this point that she started to feel very very low and down. She was much sorer after this procedure than the first operation. We kept her positive by telling her how well she was doing and that she would get through it and we would be with her all of the way. The home care nurses were fantastic with her and us and kept us going through out it all. A few weeks after the lung procedure mam started to feel better and had bit more energy and so we asked her what was it she would like to do while feeling well, her wishes were a) to get her house decorated so that if anything happened to her it would be ok for my dad, b) to go on a weeks holiday with my dad, my brother and his wife, myself and my partner c) to go to Lourdes and d) to go through what she wanted for her funeral. Needless to say when she said the first three they were ok to take and do but to discuss her funeral was something no one was prepared for but we had to give her the space to do that. We figured the cancer journey she was on was her journey and when she was ready to discuss or do things we would be there for her and she was guiding us through out the whole thing.

Of we went and organized to get the house decorated, she was thrilled with this and it was great to see her smile, it was even better being able to bring her out to look at paint and furniture. It was a huge struggle for her to do this as she could only walk a few steps before needing to sit down and she was determined she wasnot getting in to the wheel chair at that point. Plus she wanted the house right if anything happened to her.

In June 2004 myself and my partner decided to get engaged and a week after my mams 58 birthday we arrived home to tell her. She was ecstatic and was determined she would be around for our wedding. We had initially planned to get married in Feb 2005 but the advice from both the docs and the hospice was that mam wouldnot be well enough so we put it of until April 2006. It broke my heart to think there was a chance that she wouldnot be there on my big day but I pulled myself together and got on with enjoying the time I had with her.

After the house was decorated we went away to wexford in august 2004 with her and it was a week that I will hold close to my heart. She really really put her best foot forward in being there and staying up late with us at night, she thoroughly enjoyed it. When we got back my dad looked in to a trip to Lourdes as on a review with the oncologist he said mam was doing great and that if she wanted to go to Lourdes she should go while well enough, he secretly told dad that 2005 just wasnot going to be an option.

My dad and myself went with her to Lourdes in Sept 2004 and it was the best thing ever for her, she got great sense of calm and peace and most of all she got huge acceptability of her illness. The one thing my mam had through her life was tremendous faith and that is what helped her through out her journey. While in Lourdes she said that god had his own wise ways and that what ever was meant to be for her would be

The week in Lourdes had a profound effect on her and for me, I just loved being able to share it with her, there were lots of tears as the two of us knew she would not get many years with this illness and so we just enjoyed the time there immensely. I knew I would never get to go back with her but always hoped deep inside that I might. On our return from Lourdes mam seemed to be doing very very well, she had accepted from Lourdes that she needed the wheel chair to get around, I decided to reduce my working week to 4 days and travel up to her every weekend to be with her for the run up to Christmas and to bring her out to do her shopping.

From Oct 2004 until Jan 05 I traveled every Thursday night to be with her for the weekends. I brought her shopping most weekends, as she absolutely loved going around the shops. I knew it was going to be her last Christmas and so I wanted her to have the best run up to it ever. She enjoyed the shopping trips, as it was our time, time that no one else was part of. Mam was determined 200% to make Christmas 2004 very very special; she bought my dad a beautiful watch to give him on xmas afternoon as a surprise and I was warned to say nothing and bought her sisters and her best friend jewellery to have as a momentum of her last xmas. Looking back I do not know how she got the strength to do it all but she was a fighter and a giver and loved Christmas plus she knew it would be her last.

There were many nights I cried thinking of how I would cope when she was gone but I kept strong for my wonderful mam. Christmas 2004 arrived and we opened our pressies on xmas morning and had a good laugh, then we had Christmas diner and then like many families sat down to watch a movie. Mam waited until we were watching the movie to give dad his special present but not only had she got one for him she had one for us all and wow, we are blown away with what she had done. Secretly in nov 2004 she had organized to go to town and buy us all something special to have, she got my brother a watch, a necklace for his wife, a watch for dad, a watch for me to wear on my wedding day and a pair of gold cufflinks for my partner to wear on our wedding day.

For mam she wanted Christmas to be extra special and wanted to shock us, well she did, we were gob smacked with what she had done and the tears welled up in my eyes because I just could not bear to think of life without her. New years eve arrived and mam was determined to celebrate with her friends so she went to bed new years eve for a rest and I got her up at 11.45pm and got her dressed and we went to her friends across the road from us and rang in the new year with them. She really really fought to stay up and she did and was so proud that she did it. I remember wishing her a happy new year and hugging her and not wanting to let go because I knew what lay ahead. The Christmas season ended and I had to go back to work and when saying good-bye something inside me told me that mam really wasnot very well and that I would be heading home again soon.

Prior to heading back to my own place, mam sat down with me and talked about her funeral, picked out what she wanted to be laid out in and picked a photo for her memorial card, it was a very upsetting thing to have to do but it was a privilege to be able to do it. I wrote everything down and put it away until the time was needed to look at it again. She also had told my dad and my brother what she wanted also and it was funny we were warned that if she was to die with no hair, we were to make sure her wig was perfect on her and no one was to see her until it was ok. While I was heading back to my own place I had a heavy feeling in my heart about her and was worried sick.

Jan 05 passed and mam was okish, she started having cramps and pains in her lung area and in her abdomen and her appetite was very very poor. A sparrow would eat more that she was. Come feb 2005 things took a turn for the worse, mam started being violently ill, vomiting and not being able to hold anything down, she was shifted to hospital and after a few tests got told that the cancer was pressing on the bowel and causing a block hence she was getting sick so much. They decided to try one treatment of chemo to see if it would unblock the bowel but it only worked partially. They were very considerate in that they did not put in the agent that causes ones hair to fall out, as that was mams wish. Her hair had grown back to be nice and curly and it was fabulous, she did not want to loose it again. Her bowel unblocked slightly and she was discharged but no sooner was she back home and she took bad again, this time they tried a tablet form of chemo and advised me to stay around for 6 weeks, as it was crucial, it was touch and go as to whether mam would make it, there was a possibility that her bowel could perforate with the blockage.

So I stayed around for the 6 weeks and it broke my heart to see her so so ill. She really went through a terribly hard time with the vomiting and was getting very fed up with constant injections to stop the sickness etc. The tablet chemo did not really work and she also lost her hair for the second time and this time it was worse for her, it shattered her completely. She knew she had not got much time left and did not want to die with no hair. All I could do was hold her and tell her she wouldnot that she would be ok. After a few weeks in hospital she just wanted to die she said she had enough and could not understand why God would not just take her, we had a chat with the doctors and passed on mams wished of no more treatment etc and they said ok but that they were going to operate to give her a colostomy bag as it would help. Her decision to not have any treatment was one she made completely on her own as she felt she had enough of needles and drips etc and she wanted to just enjoy the time she had left as she knew it was not long. She had that operation in mar 2005 and did well recovering from it. When she was discharged she was happy with her decision to have no more treatment as: a) it wasnot going to give her much extra time b) she wanted to enjoy what she had left without getting injection after injection.

The operation ended up with her having an ileostomy bag (a bag attached to her small bowel), her larger bowel was far to diseased to get a colostomy (a bad attached to the large bowel). She tackled the changing of the bag very well and really astounded everyone including the doctors. She was a woman that had sheer grit and determination and even though she was not going to have more treatment she certainly was not going to give up the fight easily.

April and May seemed to pass very very quickly but it was obvious to all that mam was deteriorating but she was happy and that was all that counted. The bag operation had helped in that she wasnot vomiting so that was good. Then in very early June she developed a clot on her leg and had to get daily injections for this and a few days after the injections started she started getting sick again and we were left with a very hard decision to make as to whether she should be admitted to the hospice. My dad was at home all of the time he had taken leave from work and here sisters were helping out giving him a break and I was up at weekends but with the vomiting it was happening at any hour and we were not getting much sleep with it all and the care for her was getting harder and harder. The hospice wanted to admit her and eventually mam agreed as she could see how hard to was on us caring for her, we literally were exhausted after over a year of looking after her.

The day she was leaving the house to go to the hospice she just turned around at the front door at said 'good bye house, I do not think I will ever see you again in this life'. Even now thinking of that the tears well in to my eyes because it was so so true. She liked the hospice and the difference was that they did the looking after and we got to just sit and spend time and talk with her if she wanted to talk etc. She was admitted to the hospice on 7th June 2005 and her 59th birthday was 08 June 2005 and a cake was brought in for her and she loved it. While in the hospice the care she got was fantastic and the care we got was equally great. I remained with her from June until she died in august. For me I wanted to have as much time with her as possible. I would spend from 10 am until 3pm with her and then again from 6pm until 11pm at night, this I did everyday until she died, apart from when my partner was up to see her and we went out for a break. It was so so nice to be able to go in to her and talk to her and feed her and just sit and hold her hand and chat, prior to her being in the hospice with all the caring for her we did not get much time to talk etc.

My poor dad was exhausted at this stage so he appreciated me being up and spending the mornings with her so he could rest, I just loved having the mornings with her it was out special time and the nurses allowed me to help washing her etc and I used to do her nails for her and clean her teeth, for me I just could not get enough as I knew her end was very very near. The weeks passed with her vomiting and in some pain but eventually the doctors in the hospice got the vomiting under control and the pain, which was great. The weeks passed and mam got weaker and weaker, but she was always making sure we were ok, not really thinking of herself at all which amazed us all. July came and I was cleaning her teeth one morning when I notices a tuft of hair coming out from under her bandana, so I asked her to take it of and she had a small head of hair. I was delighted and so was she, she said at least she could die happy now that she had her hair. As July 05 passed I knew in my heart that mam only had weeks left so I told her one day how much I loved her and that it was ok to let go that we would all be ok and that her own mam and dad were waiting for her and not to be afraid to go to them if they came for her. When I said it to her, others then followed and she smiled and would say'To die is a very hard thing but when I get my halo and wings I will mind you all'

Come Sunday 31 July 2005, mam was very weak but that day she seemed to have extraordinary energy, all the family were in that evening and she was having a great laugh, and saying how she could not wait to get out of the bed as she was in it for the last 2 months and that she would be out of it soon etc. That evening after we left she had a chat with her own brother and told him she was letting go as she could not do it any more and that he was not to be worried about her that she was going to a far better place and would mind us all. The next 2 days passed and mam was very sleepy and then on wed 3rd august I noticed a complete change in her breathing and skin colour and the nurses told me to get all the family to come in and they did, every one of them stay with us until 11pm that night and it was great support to have.

My dad, my brother and myself stayed with her through out the night to help her, as we knew she was on her way home. We got through the night and the next morning we were told she had not got long left at all so all the family came in and stayed with us. The day passed with mams breathing get slower and slower until at 9.03 the night of 4th august she took her last breath. It was heart breaking to say good-bye but at the same time it was a huge privilege to sit with her throughout that part of her journey and her whole journey with the cancer battle she had.

When she died she had the most peaceful happy expression on her face and all the pain was gone, every single bit, that much was obvious to see and I knew then in my heart that she was happy now and not in any pain and in a much better place. Inside my heart was aching and I just felt so so low, I together with my family had given our lives for 18 months to looking after my mam and now she was gone it just did not bear thinking of. We had her laid out at home as that was what mam wanted and it was great, we had her home and it was so so nice to be able to sit with her anytime that we wanted and I was so delighted to have her in the house again. The funeral passed and it was so busy that it has only been in the last month that things have started to hit home for me and the sadness I feel is immense.

The past 18 months have been incredibly hard with lots of emotions: sadness, happiness, anger; you name it they have all been felt. I miss my mam terribly and would give anything to have her back but not sick, she was a real trouper. All throughout her life she thought of others even in her last few weeks of life she was thinking of others. She to me was a star in every way and my heartaches for her now. I do believe that she is not suffering any more and is in a better place but the loneliness I feel for her is unreal and very very very hard to live with. Yes I have lost my best most treasured friend in this world but I have gained a fantastic guardian angel. I firmly believe that she will help me through out my time on this earth and I pray to her and talk to her all the time.

One of the hardest things for me is that I am getting married in April 2006 and my mam wont be there and I know she would have loved to be. Part of me is looking forward to our big day but part of me knows it will be sad, but I am determined to enjoy it, if my mam can battle the way she did with her cancer I am determined to get on and enjoy life and live it to its fullest every day. The good thing is both my partner and myself included my mam in some of the wedding plans, she picked our readings for us, she picked the invited and I got a picture of my dress and showed it to her. Its tremendously difficult to think she wont be there physically on the day but please god she will be there in spirit. We are all trying to cope in our own way with the huge loss we have suffered and its hard but I know we will get there as I am sure my mam will help us along the way. At times I feel very cheated that she has been taken from me but I have been lucky to have her until now as some children loose their parents much younger than I am plus if I dwell on the anger etc too much I could become very very bitter.

I am having good days and bad days that is all part of bereavement and I know I will hopefully come out from the dark days I feel now to better brighter ones. I know its all going to take time though and the one thing I have learned is just to go with it, if I feel like crying I let the tears come etc there is no point in holding it all. At times I feel like I cant keep going and dread what the future may hold for me in particular when I have my own family as I would give anything to have my mam with me as she was so looking forward to the day she might become a granny. Right now I do not think to far ahead as its hard to imagine that I will have so many years without my mam being with me physically but I just keep saying that she will be with me in spirit and please god she will.

To all the people out there who have a relation or friend that has ovarian cancer or any form of cancer for that matter, let them lead the way through out their journey. Let the patient make decisions with regards to no more treatment etc with the advice of the doctors and support of family etc. The person that has cancer will know and feel when its right to talk about certain things and its so so important that they are given that space to do just that. Plus for people who have others they know that are ill, enjoy and savor every moment with them, the memories you will cherish for the future.

To all women who are battling this disease I say keep fighting, you are all very very courageous and brave. I have the greatest respect for you all as no one can really understand wha**** like unless one has gone through it with some one. The reason I wanted to tell you my mams story is that she kept battling and got 6 months longer than the doctors predicted plus I believe that no one only god knows when a person will pass from this world to the next. Plus I have learned that we should enjoy every day of our lives like it is our last as life is such a precious gift. Many times my mam asked why did she get cancer and for along time I couldnot answer that then in the end i said to her one day 'Mam, God picked you to get this because you are extra extra special, he knew initially it would be hard for you but in his heart he knew you would have the strength, courage and dignity to cope with it plus you would touch so many lives throughout your journey that many people would change for the better as a result of that, and that is a great thing to be able to do, to touch so many and make them change'

To all who are caring for a person with ovarian cancer or any for of cancer I say dig deep and keep doing what you are doing, as the time you spend with the person keeps them going. I remember asking my mam would she like me and everyone who was spending so much time with to give her time on her own at any stage and her response was 'I love you all coming and I love just sitting and knowing you are here, it gives me reason to keep going, you are to keep doing what you are doing as I am enjoying all the company of everyone'

Finally to my mam I say,'you now have you special wings and halo that you so thoroughly deserve, I hope you are happy and enjoying heaven. I love you and miss you so so much but I know someday I will see you again. You were the greatest mam a daughter could ever have'

arseim80
Posts: 4
Joined: Feb 2005

Hi Sharr, thank you for sharing your story with us all. My mom passed away from ovarian cancer on Nov 24,2004 and it will be her one year anniversary on thanksgiving day. She was sick for two years and I always hoped that she was going to bit it, I miss her so much and I wish I can tell you it gets better it has not for me. I miss her so much and I will do anything to see her again. When I read your story it sounded so similar to mine and it made me feel better knowing that I am not alone. God bless you.

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