The Royal Marsden a blessing

This is my first time of writing a blog so not too sure of what i am doing so here goes. I was diagnosed with O.C stage 3c in sept 2010 initially thought the weight gain and bloating was all down to cake and wine!! was also nursing my beloved husband at the time who a year earlier had been diagnosed with an aggressive brain tumour he sadly lost his battle 6 weeks after my diagnosis!Trying to come to terms with it all has been a nightmare for me and my beautiful and loving 6 children. I had a full hysterectomy and debaulking within 2 weeks of diagnosis and 2 weeks after that i started my first round of chemo the usual cocktail it seems of carbo and paclitaxil, i have since gone on to have 4 other regimes all with none or very little effect until my referral to the Royal Marsden where in feb 2012 i was the 7th and last person excepted on the XL 184 trial this trial has been a blessing and im sure i would have lost my battle sometime ago if not for this drug even tho i have been off it more than on it!! I have enjoyed reading all your blogs its so nice not to feel alone and to know that what ur feeling someone else is too

26 Replies

oldestnewest
  • Dear Nicola,

    What a lovely post and what a terrible experience you have had..thank you for sharing this.. I am so sorry ..I am sending you my best wishes and thinking of you love x G x :-)

  • thank you for your comments Gwen it really does help to share sending warm wishes back to you

  • Hi Nicola,

    It sounds like you have had a real rough ride, bt are obviously strong enough to battle on. I'm glad to hear your comments about the mars den, as that is where my oncologIst is now referring me after he has run out of treatments . It would be wonderful if they could find something for me and keep me going another couple of years, so I could see my baby grandaughter again. She is on her way to see us for the first time, from Los Angeles.

    Good luck with your treatments.

    Love n hugs

    Viv

  • Dear Viv,

    Although I live in Canada (originally from UK), I have heard wonderful things about the Royal Marsden - so I feel it in my bones that a solution will be found for you. I'm sure you will see your baby baby granddaughter again - I'm counting on it. I believe that the RM is the leading hospital for OC, so you'll be in the best hands possible and they'll have many other options to beat down the disease.

    Good luck and take care :-)

    Sandy.

  • As long as I have the love and support of my family I can and will continue to fight this battle my children and grandchildren are the reason I keep going and the reason I get up everyday!! they are such a joy. I bet you can't wait to see your little grandaughter and if you're anything like me you will just burst with pure joy when you see her. I hope you soon get your referral to the RM and that they will have something for you they really are a wonderful team. take care. nicola

  • Hi Nicola!

    It sounds as if you have had an awful time but have come through it all really well. I admire your ability to cope with all that, such a difficult time for you around the time of your diagnosis. It is good of you to share the experience of the RM with others on here. I know how much it is useful to share info on treatments, experiences and trials.

    Welcome to our blogs, I hope you have many more thoughts to share with us. All good ones, I hope!

    Love Wendy xx

  • hi Wendydee

    thank you for your comments, everyone on here sounds so lovely I'm sure I am going to find alot more reasons to be cheerful!! take care. nicola489

  • I know it has helped me too being here. I think you're very brave to have said out loud what you have been through. Having the disease is hard enough without having to had to cope with such things as you have done. I'm glad you got on the trial with the Marsden. I hope you continue to make progress.... warm thoughts go your way. :)

  • Thank you TinaB

    so lovely of you to comment, everything has definitely been a roller coaster but I am just starting to get used to the ride!!! best wishes to you. nicola489

  • Welcome aboard, this site is such a support to women in our situation. I never miss a day looking on Ovacome reading Blogs and questions. I am sure you will find help and friendship here. Don't be afraid to ask question someone always has the answer or has been in the same position. I have learnt so much from the site since my diagnosis in May this year.

    Sending you Love and Hugs Babs x x x

  • hiya

    I'm definitely glad I found this site and all you lovely ladies hope all is going well with your treatment sending big hugs and warm thoughts to you. nicola489 x

  • Hi Nichola

    What a bad time you have had, I think you are very brave to cope with it all. I was

    diagnosed with OC last Sept, nine months after my sister lost her husband. So I

    have had to help my sister with her loss and also go through a big op and chemo.

    Its been really hard on me so cant imagine what you have felt like. On a happier

    note everyone on here is very caring and can always find a lovely message to

    cheer you up.I hope you continue to make good progress with your trial.

    Big Hug Angie xx

  • Thank you Angelina, yes this has been one of the toughest 3 years of my life but we have to keep battling on and with the support of my family and friends i intend to do just that. Already I feel the support of this site and the ladies on it will be immensely important to me

    hugs nicola489 x

  • hi nicola

    im so sorry for what u going through... i am not knowledgeable like the other ladies, they are all brill... they have all helped me

    good luck and god bless... my thoughts are with u

    shenx

  • hi shen your support means alot thank you

    take care nicola489 x

  • Dear Nicola

    Words fail me. What a journey you've had. I can only offer sympathy, support and friendship as have the other ladies on the site and I hope that this helps. We'll always be here so please post some more and you'll get lots of wise, funny and apposite comments in response. What I'm feeling very excited about is your treatment plan from the RM -which our lovely Viv has wickedly renamed the Mars Den - and they've come up with something which seems to work for you. I really hope this works and look forward to hearing how you're getting on. Keep posting as you give us all hope and courage.

    Loads of love xxx Annie

  • Dear Annie

    Thank you for your kind words it sounds to me like we are all on an incredible journey each ladies different from the next but I think we all have the same goals in our hearts and minds not least trying anything to get rid of this "parasite" that lives within us. The RM have been my saviour I cannot speak highly enough of them and long may they continue to work and research tirelessly for men and women like us.

    warm wishes nicola489 x

  • Hi Nicola

    What a dreadful time you've had. So glad that you found the Marsden trial and that it is working for you. Do you go to the Brompton Road one or Sutton?

    Moniquex

  • I can't speak highly enough of the RM particularly of my oncologist she is my guardian angel. I go to the Sutton branch do you go to one of them?

    take care nicola489 x

  • I went to the Sutton branch when I had breast cancer in 2010. They were great and I did feel very looked after. Even the food was excellent, as I found out when I was hospitalized briefly! Now I am in Singapore and have just finished chemo for ovca. My oncologist here is lovely too. What a difference it makes!

    All the best, Moniquex

  • Dear Nicola,

    You have been through a terrible time, but your obviously an amazing fighter! So sorry to hear of your husband's passing because of an aggressive brain tumour. That alone would have been enough to make many people want to 'throw in the towel'. You are obviously made of tougher stuff.

    I have a dear friend who is in remission from Stage 3c Ovarian cancer and she's caring for her husband who has Stage 4 brain cancer. Like you, Nicola I think she gets her strength from her children (and grandchildren).

    I am in awe of your strength. As time goes along and you finally beat the beast, I can see you helping others engaged in the same battle as you. You will be an inspiration.

    Keep on fighting and never, never give up!

    Sandy (dx Stage 1V OC in April 1999. in remission for almost 13 years).

  • Thank you Sandy

    I have always been a fighter and will continue to be as long as I can be if this disease thought I was going to go quietly it picked on the wrong person here lol. Seriously I get my strength from my family and I guess its pretty much the same for most of us. Well done to your friend for her remission and I wish her strength and courage for her journey ahead if anything like mine was with my darling husband it will be a bumpy road but again if anything like my family they will keep each other going and keep each other sane!. remission for 13 years wow that is impressive keep up the good work.

    nicola489 x

  • Dear Nicola,

    As you can see you are not on your own in this battle because you are surrounded by warriors who are fighting along with you and will never give up! Your children must be a blessing to you. I am also a newby blogger and have received lots of love and support so along with them I send my love to you.

    Wx :-)?

  • It is so nice to be able to talk freely on a site like this where everyone has felt or is feeling or thinking the same things you are. Things that sometimes you just can't explain to anyone else. Thank you for your support.

    nicola489 x

  • Hi Nicola

    I am so sorry to hear what you have been through and are still going through. I nursed my first husband through a brain tumour many years ago so I know how difficult that can be and on top of that you now have oc. Life sucks sometimes,but not enough to give up. You are extremely brave and courageous and that will get you through this. I hope the trial goes well. I am sending love and hugs and good wishes to you. You are not alone and remember there is strength in numbers.

    Love Chris x x x(stage 4 - 2 years into remission)

  • Hi Chris

    So sorry to hear you also lost your husband to a brain tumour many years ago.It really is a miserable disease. Life can definitely suck sometimes and it can be difficult to remain positive but i am lucky enough to have a loving family around me and good friends and now I have found support through this wonderful site and the lovely people on it. The trial continues to go well so fingers crossed for the future

    warm wishes nicola489 x

You may also like...