telling my story

[carol-b]

I have read through the interesting questions and stories on this site and would like to share my own. In 2009 I was diagnosed with Stage 3C OC, serous epithelial cell type. I was 55 yrs old. All the medical types were doom and gloom. I am a nurse myself. The first thing I learned was to be my own advocate. For some people researching the net is overwhelming and can be very depressing. This may not be for you. It was empowering to me even though not all the information was positive. I wanted to know what I was up against. The truth is as said many times throughout this site, "we are all different", even if we have the same stage, same cell type, same surgery, same treatment, same docs. In 5 years I have undergone 2 surgeries (the second at my own insistence), and am currently on my 5th round of chemo. BUT I recently returned from an adventuresome vacation that included rock climbing, horse back riding, hiking, white water rafting, fly fishing, etc..... AND I was not this adventuresome prior to cancer. In fact, I was quite sedentary.

I added the following to my life to assist with my journey through cancer. First, I developed a deeper faith which I feel is the main part of coping with any major illness. I attempt to walk at least 3 times a week.(nothing extreme). Diet is the hardest for me but cutting out sugar is major. "Cancer loves sugar". Then I added in some interventional types of treatments such as chiropractic care, acupuncture, mindfulness based stress reduction, massage therapy. Just make sure you tell your therapists if you are receiving chemo.

This life is a journey and it is what you make of it. Oh yes, I have the "not so good moments" and the "hoo-hoo moments". Each time we just pick ourselves up, dust ourselves off and forge ahead. We all get something in life. Some of us earlier and younger than others. Our hair grows back. Chemo side effects diminish and life goes on.

I have gone through so many different things since being diagnosed. I believe having cancer made me a better person. Some may scoff at that statement. It made me more aware, more kinder, understanding, less judgmental, more connected with my family. I missed a lot in my life prior to these years. I was always too busy, hyper, high strung and too worried about my career.

As has been said earlier, "take one day at a time". At the end of the day think of one good thing that happened or you saw.

I have far outlived the time I was expected to have. I feel good. That is the most important. I wish each of you the best health you can find and peace of mind. Continue to fight the good fight.

Fondest regards

[TrishLey]

What a terrific personal journey, Carol. Wonderful to see how you have embraced the 'New Normal' we all face and have made your life a better place to inhabit for yourself and those around you. You are right, hair does grow back and chemo side effects do diminish and life goes on and its what you make it. Thank you for sharing. I've been feeling creaky and old (I'm 43) for the last 18 months but I think I'll start the walking 3 times a week commitment and see where it takes me. I don't think I'll ever rock climb, I'm way too cowardly LOL xxx Trish

[Whippit]

Another lovely post affirming what can be good in life but acknowledging how hard it can be at times. These posts must be such a help for women newly diagnosed and their supporters. Not everyone is so lucky but the important thing is to grasp the day and to make the most of life's opportunities.

I agree with you that a diagnosis of cancer can change things for the better in all sorts of ways. I'm enormously impressed that you have got through 5 rounds of chemotherapy and life remains rich. I like the expression 'pick ourselves up, dust ourselves off, and forge ahead'. It has been said by a number of women I greatly admire and would be proud to emulate.

xx Annie

[kazrazmataz]

Very inspiring and helpful. thank you xxx

[kaz14]

Fantastic, uplifting post, all the very best to you Carol and thanks for sharing your story

Love Kaz xx

[emskilemski]

Thanks for this post Carol - very uplifting to read. It seems that a positive mindset can work wonders x

Thank you

Emma

[Zannah]

Thanks for such a positive post Carol.

Wishing you all the best.

Love

Zannah xxx

[Fernanda]

Thanks, Carol, for sharing your story with us. I think many of us identify yourselves with your pre cancer lifestyle. I worked many for the government, in the national audit office of Brazil, so was always busy and stressed. Happily I always liked sports, so gym and running were my leisures. But after cancer, I decided to make something more fun: horse riding and drawing lessons. And I´m enjoying them a lot!

Loved your story.

Hugs, Fernanda

[jennybutler]

Thank you for this encouraging post, I believe in the power of the mind I make my cancer live with me not me with it. I have carried on working and doing most things even when on chemo. and take it all in my stride and will not stress out over it sure being positive has helped me and boy I have been through the mill a few times with the side effects of the chemo.

Keep on going Carol I admire your spirit.

Love Jenny xxx

[charleee]

What a good attitude you have, it is nice to hear positive views! Good luck and thanks for your encouragement! X

[Btte]

Thank you Carol, great story to start my day I wish you have many more great adventures. Love Bridie. X

[Cathy1]

Dear Carol- B,

Your story almost mirrors mine.

I'm a 54?yesr old nurse - disgnosed in 2010. Currently on cho number six. Have had added hassel of total bowel obstruction since Feb this year and have not eaten since then. Managing with intravenous nutrition for 12/14 hours every night.

However we plod on for our lovely families and friends and that strong will to live. My strategy is to always have a goal to aim for. My faith is also a huge factor in staying positive and having all the complimentary therapies you describe. So the message is keep going - particularly pleased to read this today as I am having a low morning after chemo yesterday.

Best wishes,

Brid

[carol-b in reply to Cathy1]

Brid,

Thanks for your response and continue to hang tough. I battled a bowel obstruction myself in 2010. It was also in February. I was able non surgically to get through it. Sorry you have not been able to eat since that time. Hope there is some resolution for you in this area eventually. My Prayer Warriors have added you to our list. Never give up. Carol-B

[Snam]

I could reiterate almost everything you said in this inspiring note, except that I was a bit older when diagnosed. I fully underscore that except on tired days, I am rediscovering so many things! Even took up knitting needles for my first grandchild - a first in 40 years! Thanks for reminding us, as I wish to remind others - that life is for living, and it's wonderful!

[carol-b in reply to Snam]

I had to smile when I read about your knitting needles. I have never crocheted or knitted and got his brain storm idea that I would start a Prayer Shawl Ministry in my church for individuals who have cancer. A group of us would meet, start with a prayer and start crocheting or knitting these comfort shawls which we would give to people along with a small inspirational note attached. So I went out and purchased many books and met with some friends. The group is going along nicely but during this process realized everyone was right handed and I am LEFT handed. To say the least it will be sometime till one of my shawls are worthy to give but it is still wonderful to hear the stories of those who have received them and know they are in our thoughts and prayers.

Carol-B

[myleena-1]

Oh what a wonderful story...you did reply to my concerns on my post for which i am truly thankful...i am also anurse RGN but lost my job 3 years ago with health problems then.i had a cyst on my spine which before diagnosis and operation was classified as a mechanical back problem., but in fact the cyst on my spine was compromising my spinal cord and nerves to bladder, bowel etc....i just started to rebuild my life ( minus my nurse registration ) when all this happened..my back op was 2 years ago now but never really recovered from that before getting, which i know now, my o/c symptoms...it has been along journey of ill health for last 3 years and now after TAH removal of omentum and lymph nodes have diagnosis of borderline o/c....i am now thinking about trying to rebuild my life but having alreadyy losing my registration i am finding it very difficult as to how to put my life back together..i,mloking at ill health retirement but dont know where i would stand on this...xx

[carol-b in reply to myleena-1]

Just some thoughts regarding your ill health retirement. I am in the US so many of our terminologies are different and the process of applying for disability is most likely very, very different.

Age here for disability is a factor, unless you are dealing with a brain trauma, spinal cord injury or a significant illness, i.e. multiple sclerosis or something else of large medical magnitude. I have found that if you are 50 or older you may have a better chance of being accepted. I am thinking in the UK that this type of program comes under the government? Is that correct? Our government program for disability is difficult and I have seen where individuals may have to file multiple times before being accepted.

I deal a bit with disabilities in my current job as well as for myself. I have a private insurance policy which I utilize from time to time over the years when I am treating so this process is much easier to navigate.

What I have seen whether it is private disability or government (we call it social security disability in the US) is that physician documentation means everything. I have found this to be the most important.

Mechanical back problems here sometimes are hard to get accepted because they say that pain is so subjective how can they determine someone's disability?

I think you would require more than one physician to complete forms for you (if this is the process you follow there) and they have to be VERY exact. You have to have regular physician follow up visits and their documentation is key in the determination of disability (or least here in the US it is)

I don't know if any of this is of help to you since I do not know your system. If you have any other questions I'll try to assist.

Also, nursing registration/licensure is obviously different between our countries. Is your registration something that expires if you do not practice for some time? Can it not be renewed? Also, do you feel you are able to return to nursing work?

Thoughts and prayers are with you.

Carol-B

[cmarkd01 in reply to myleena-1]

Hi. My wife applied for and is currently receiving ill health early retirement. I would imagine that all pension providers are different, but with Ingrid's the steps were:

1. Make an application to the trustees of the pension fund

2. Go to see her company doctor for an assessment;

3. Obtain two letters - one from her GP and one from her Oncologist describing her condition and its limitations

4. Submit the information to the trustees

I would start with contacting a trustee and see where that takes you.

Best of luck. X

[Hidden]

How inspiring you sound, but that is what you do, you get a choice lie down or pick yourself up dust yourself off and start all over again. You have had it hard from time to time yet you are not letting cancer control you. I have had oc since 2006 had three chemo regimes and one bout of rt I finished my last chemo in Feb but staying on Avastin every three weeks. It is daunting when it comes back but like you in between, I return to work, have a little holiday but nothing as adventurous as you. I also like walking and it is good for you. Now the sugar, I love my treats and I do try to balance them. I have a homemade juice every morning with celery green apples ginger and spinach adding in what ever is on special in the supermarket. I also use milled flaxseed. Recently at an information day for Ovarian Cancer in Cork Ireland and the oncologist said we have to remember there is always hope I found this statement very uplifting. Hoping you continue to cope with this stupid disease but at least now its more chronic that thought years ago by the medics. Wishing you well and hope you get a good gap again before next treatment

[Lizneild]

Dear Carol B,

I am a bit older. 78. I am just starting chemo again after a wonderful remission of two and a quarter years. Extraordinary things have come about in those years. The love, the adventures, the joy. These days I give myself time. If I glimpse beauty I do not pass it by. I speak to it in my head. Tonight the moon rose and I remembered a psalm from my schooldays. "The heavens proclaim the glory of God and the firmament showeth His handiwork". I'm not really a believer but cancer has put me in touch with those things we don't have words for. I didn't give myself little pep talks. Happiness just happened. I just tried to tell people when I was grateful, to notice when I was out of step, to be a better listener.... I'm not looking forward to this chemo. The last lot was N.B.G. or words to that effect but perhaps afterwards life will go on and perhaps my old age will still be blessed.

Thank you for your lovely post. It made me think of sharing mine. To all of us I say Atta Girl. XXLiz

[thesilent1]

Hi Carol. Thank you for sharing your story with us. Ann

[cmarkd01]

Very inspirational! Many thanks for sharing it with us.