A big thank you

Hello all,

I have to confess to being a long time lurker on this forum but I really wanted to say thank you to all of you who are less shy than I am. I have been reading all the blog posts and questions for 18 months now and sharing people's journeys and advice and I am very grateful to be a member of this forum, even if I am a silent one!!

My Grandma died of ovarian cancer when I was little (I am 40) and my mum was diagnosed in April last year with grade 3C ovarian cancer. She had a radical hysterectomy and oophorectomy and 6 months of chemo which finished last November. My mum has been tested for BRCA1 and BRCA2 and has come back negative but the geneticist was quite concerned so is now trying to track down a piece of her tumour so he can test for Lynch Syndrome or hereditary nonpolyposis colorectal cancer (HNPCC). We also have an early bowel cancer death on my mum's side of the family which is where the Lynch link comes from. Thankfully my Mum is doing ok. She is having 3 monthly check-ups currently and her CA125 is stable although it isn't a good indicator for her.

But what I really wanted to say is that reading all your posts has been so helpful. Knowing that there are many other lovely ladies on the same journey as my lovely, special mum has helped no end. All the fantastic,useful advice helped so much when she was really poorly. I knew she wouldn't come on the forum but i knew that I could gather the info for her and share it with her. I am eternally grateful to you all and I wish you all the very best on your individual journeys.

Much love,

Kate

16 Replies

oldestnewest
  • Hi Kate, I'm so glad that we have been helpful for your Mum and you. Hope her treatment continues to be heading in the right direction. I hope you have been given the option of having checks, too, with a history like that. It's just a bit of insurance for you and your family. GPs will usually test close family members of anyone who has had OC. My sister and Mum were tested, my sis is tested with a CA125 every year. Better safe than sorry ;-)

    Love Wendy xx

  • Thanks Wendy. I am definitely going to try and get tested regularly. I haven't talked about it with my GP but I will next time I visit. My mum saved up every year so she could have tests on an annual basis at a private hospital as in years gone by they didn't do so many tests via the GP. It was a good investment though as it was the scan that picked up the growth on her ovary. She didn't have any symptoms at all and yet the tumour was growing at a truly alarming rate :-( The fact that it is so silent as it grows is just so terrifying.

    Kate xx

  • So glad that they found your Mum's tumour early, it's so important to get early treatment. I am glad that you are taking steps towards getting yourself checked out too. All the best to your Mum and you :-)

    Love Wendy xx

  • Hi Kate,

    Welcome to you and your mum, I am so glad that your mum is doing ok, it must be so hard for you, to watch your lovely mum be so poorly, but you have probably read a lot of success stories and I am glad that you have found it helpful, we are here if you need us, sending you love and best wishes x G x :-)

  • Thanks for the lovely welcome Gwyn. I have to admit that It has been very hard watching her struggle especially as she never really got over her Mum's death from it so she was dealing with that too.

    I was, and am still, completely inspired by all the lovely ladies on here. So many tales of courage and hope and strength. Much though I didn't post at the time it really did make such a difference to come onto the forum and read other people's stories. Kate xx

  • Dear Kate

    Thanks for your lovely post. You are most welcome to join in the banter and blogs - it's not just for women who have Ovarian Cancer, but for their supporters too. There might be questions you want to ask or items to share. Perhaps you could show your Mum the site and you never know she might find it interesting and supportive. The IT side of things isn't too complex.

    It sounds as though your Mum is doing well so that's good news. I think it's wise to look into genetic links to cancer. My daughters have been offered CA125 tests from the age of 40 even though I've not been tested positive for the BRCA1 and 2 genes.

    We'd always be happy to hear from you. xxx love Annie

  • Annie, thanks so much for your kind words. Having taken the courage to post once I am sure that I will post again. I will probably be like a bad smell that won't go away ;-) I will definitely see if my Mum would like to come and join you too. Kate xx

  • Dear Kate

    I have to assure you that you would never be a bad smell! We love having you on the site and it would be lovely to hear from you Mum too. There's also a chance to meet up with other families on Members' Day next year in London - Saturday 18 May. I've never been but I've heard it's a really good day so I'm not going to miss the next one. If you keep looking and posting on the site you'll see more information about it nearer the time.

    Don't forget we're also here for you. It's a tough call supporting a Mum with Ovarian Cancer. I'm so deeply grateful to my daughters. They've all been absolutely wonderful and continue to be a source of joy. Sometimes we forget to say thank you to you all.

    xxxx Annie

  • Hi Kate!

    Welcome to you both! My daughter is a couple of years older than you so your mum must be close to my age! Tell her to that it gets easier! And don't try to take over! You will want to do as much as you can for her but She will be better if she still feels in charge of her own life.

    Good luck

    Margaret xxxxxxxxx

  • Hi Margaret, thanks for the lovely welcome. What wise and insightful words you shared. My mum will be delighted to know that it gets easier :-) and I know too that I need to not take over, no matter how hard that is ;-)Kate xx

  • Dear Kate

    Thank you! Your mum is in my thoughts! I am 3 years on and currently feel great!

    Love

    Margaret!

  • Hi Kate

    So glad you found the courage to write this, it was so nice to read. I hope we hear more from you in the future. (It can get to be a habit.)

    Great news that your mum is doing so well.

    Much love to both of you

    Mary x x x

  • Hi Mary,

    Thanks for your lovely message. Having broken the seal I suspect you won't have heard the last from me ;-) I have been so touched by the welcome that I wish I had posted ages ago rather than being such a scaredy pants!!!

    Kate

    xx

  • Hi Kate

    Long may you lurk!! I'm glad it has helped you and your Mum. I hesitated before responding to any questions/blogs but this site has been so supportive to everyone.

    Hope they can do the appropriate tests or you will be forever wondering.

    Love

    Anne x

  • Hi Anne,

    Thanks so much for your kind message. The ladies who belong to this forum are just amazingly supportive and kind and welcoming. The internet is a truly wonderful thing :-) Kate

    xx

  • They usually do a CA125 blood test and an ultrasound scan, just to check, in the first instance. Both are non-invasive and not at all scary. It's just like an extra bit of insurance. All the best to you and your Mum. Let us know how you're both getting on

    Love Wendy xx

You may also like...