I’m a mother. I have Lynch Syndrome and here is my story……
I began with I’m a mother because when I got my diagnosis that’s the first place my emotions/survival instincts went to. They went rushing into that primal place in my brain.
The hardest part for me having Lynch is looking at my three beautifully perfect children and feeling that I’ve contaminated them.I’m 39 now. When I was 37 my dad who was a young and healthy 59 year old went for a routine colonoscopy and found a growth. The result when we got it was colon cancer.
It was a hard time for us watching him. Dad had an operation removing part if his colon. He then began six months of chemo.
During this time we watched dad change! He was usually a logical and pessimistic person. Cancer somehow opened his optimistic side. He hasn’t been the same since really.
My aunt(fathers sister) had cancer a number of times. The first time she was at the of 35! My aunt lives in America. She was an OR nurse. She had many medical friends to discuss her reasons for getting cancer so early in life. She discovered she had a genetic condition called Lynch Syndrome.
My aunt was adopted by a couple in New York. She grew up apart from us. She only found us in 1994. She thought she was going to find her family and answer her own questions about who her family was. As you read this story though you’ll see that she became the person who actually saved her TWO brothers lives…..and potentially and probably will save her nieces and nephews AND grand nieces/nephews….
Dad decided that he too should get tested for Lynch Syndrome. The result was a given he felt. It was positive.
The focus was now on his children.
I decided to get tested straight away!
I had to know. Nothing could be worse for me than NOT knowing.
I told them to ring me as soon as they had them. Five weeks later I got a call.
My results came at the worst possible time of year. It was December 18th. One week before Christmas.
I’d never wanted to fail a test so badly.
I had Lynch Syndrome.
I was advised to get a hysterectomy after my children were all born.
Colonoscopies were now to be a regular thing in my life.
The worst part. For me. Was thinking of my two daughters and son. All young newbies, at this point.
It hit me on Christmas day. I rang my aunt and just cried…. a lot.Time for action. A week later I made a gynae appointment. I booked a colonoscopy. I had blood tests and my uterus checked.
I booked my hysterectomy for March. After my birthday in February. Before my daughters in May. I had it all worked out.
I decided that no one was taking my ovaries. I am way too young to hit the menopause just yet, I thought.
An au pair came to help me with the children in February. My husband travels with work a good bit so “a husband stand in” was necessary!
My operation was good. As in, it was successful. I recuperated well. My ovaries had their own blood supply so menopause was very unlikely.
The hardest part for me was letting go of the first home to my babies. That place that I rubbed so much in anticipation of meeting them.
The womb is such a central, vital and identity making part of any female.
I was going to miss it. I still do. It served me so well.
I haven’t had a period though in 17 months!! And can have sex any day now (when our three children/work allows).
There’s such freedom in that. I’m off to Italy in two weeks for our summer holidays and a period doesn’t even factor in my plans. WHOOP!
I had a colonoscopy 6 months ago. I had a large polyp and a small one. My colon guy said (when I asked was it a dangerous polyp) “It makes no difference now. If it was dangerous. It’s not there. I removed it. It’s gone. Any time you get a polyp. I’ll take it out. You’ll hopefully never know now what could have turned into cancer. That’s the way to look at it now”
I’m trying to stick with that frame of mind.
Early screening is key. It’s vital for survival.
I’m hearing that primal part of my brain. That part of my brain that kicked in first when I heard the words, ’You have Lynch Syndrome. I’m sorry’
Well. I’m not sorry. So far.It’s saved us by knowing.
It will continue to keep us well and healthy. There might times when I struggle with this. I’m determined though to live it and believe it as best as I can.
And who knows….. by the time my children become adults. There could be better ways and less brutal (removal of bits through surgery) ways of living with Lynch.
One thought on “Previvor – Female and Mother”
Thanks so much for sharing your story, Claire. Doing so really is going to save lives! All the best.
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