Hello ladies, I was bag packing for a charity last week and it was in a local store. I met quite a few people that I had not seen in years. It was at the checkout and some of the questions people were asking me made me giggle or shocked as they were quite personal. I have been very open about my cancer and have raised awareness but come on there is some things you just don't ask lol They mean well but it was awkward trying to answer without everyone around me listening.
The funniest though had to be when a girl I know touched my hair and asked was it my own ! Imagine if it had been a wig and she got me on a bad day and I had got upset - thankfully not but some people have no filter !
I was quite proud to say yes so I thought I would change my profile pic and ditch the last one that I had my wig on. I can finally claim my own hair again and that unfortunately includes body hair too ! Hopefully I haven't spoken too soon as my scan is coming up in December BUT I am feeling good and staying hopeful that the disease in my liver and stomach remain stable and I can continue on this parp inhibitor. It has been 9 months since last treatment and 2 and half years since diagnosis, not bad for a stage 4 with weeks to live back in March 2014 !
Praying it continues. You ladies continue to give me hope, support and inspiration every time I come on this site.
Love to you all xo
Written by
Julie40
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Jess the steroids used to wreck me and then one day my friend told me she didn't take them all the time although do not listen to me speak to your Onc beforehand. I followed suit and only took the morning dose to get me through the first part of the day. I was surviving on a few hours sleep a day and was prowling all night.
I will watch for your post, there have been some funny stories on here with the steroid rages and reactions ! Keep smiling xo
I have hair envy lol 😂 wonderful news your doing so well ... I can usually handle the insensitive comments ... the worst is when they just stare at you intently and don't speak ... I forget I am bald and wonder what they looking at ... I just want to be spoken to as a person I'm still me even thought I may look strange 😳
This is the best site to come looking for PPC comments and feedback. I contribute to other sites and normally direct people here as there are many positive women to offer support instead of the general stats xo
Great post, can just visualise you trying to answer some of those questions whilst thinking "did she REALLY just say that!". !!! It made me smile which is always good for us isnt it?
So awesome to read that you've done so fantastically since your initial diagnosis, and - yes as you say - long long long may that continue.
Thank you Clare, thankfully I am quite measured and used to dealing with people that don't have a filter. My ex husband said to me a few days ago that I have so much patience even with people who are idiots lol I took it as a compliment. Smiling and laughing are infectious. Hugs xo
Looking good Julie! Glad you are doing so well. Love your hairstyle! Your post made me smile and cringe in equal measures, people just dont think sometimes before they speak , something we are probably all guilty of at sometime lol . All the best, Kathy xxx
Thank you Kathy, you are right I am definitely guilty of it and I was likely the same before I found myself in this position. I did tell someone once that they had something on their face ..... it was a scar - I am actually cringing now at the thoughts of it ! You are my cancer warrior, I am on your back and following your track ! xo
Yosh I am still on Rucaparib, I have been on it since April this year. The first couple of months were rocky but then it just settled. The data is coming back and seems to be extending disease free periods to 10 months. My year treatment free is February and that is my next personal target as it keeps me in that platinum sensitive bracket. Mini milestones xo
Thank you Helen. I really believe that others can inspire you when they have walked in your shoes. We all do that for each other. That is what makes this site so special x
Hi Julie. I bet you wish you had touched her hair back and said 'yes it is, is yours real?! 😉.
Your hair looks gorgeous, by the way. It really suits you. 😀👍
So pleased you are still doing well on the trial and fingers crossed for your December scan! I've been on Olaparib for 3 months now and my CA125 has stayed in the 'normal' range, with a current 26, the lowest it's EVER been! 😀 xxx
Glad to hear Olaparib is going well for you. I've been on it for 2 years 11 months now and so far so good. It even brought my CA125 down lower to 'under 3' where it's remained for the last couple of years. I hope it does as well for you with minimal side effects. xxx Kathy xxx
Thanks Kathy. I know you've been doing well on Olaparib for a long time and it gives me hope!! The only reservation I have, is that I had residual (but stable) desease before I started on it, whereas I know you were NED. xxx
Lovely hair too! If you are on Facebook we have a small PARPs group up and running. Not allowed to share link unfortunately on here. Send me a private message if you want the link. Good luck x
Hi Anita, you can share the link- it's a support and information group so is within the guidelines! Only prohibition on this site is fundraising for other charities and organisations except for Ovacome... Sx
Lovely post and pic - thank you!
Glad to hear you're still doing well on the trial.
I got taken off it pretty quickly when the first scan showed the beast on the move again. But I think I was getting the placebo anyway...
Nevertheless, apart from the cold which everyone seems to have at the mo, I'm feeling fine and hoping to hang on for another trial. x
Julie Ive got to say i think your wonderfull......charity and your cool inspiration for me always. your post made me smile,my funniest one was someone said wish i had a wig so could wear it when hair needs washing..,that im pleased ive got a lovely wig! no filter at all. but i know it was meant in the nicest way..
You are one great lady and an inspiration, bag packing indeed. Well you got more than you bargained for. I was very reticent about my hair loss at the beginning. Some didnt notice but one day I did drop into work and no one commented. I had a cuppa with one of the newer staff at the time a young girl, and she came out with, Joan would you take off your wig because I am curious as to what you look like without hair? I duly obliged and we had a great laugh. She tried it on herself and the boss came in and was horrified which made us laugh more.
Fantastic post Julie and good job you didn't take it too personally ! Honestly, some people..... 😂 Your hair looks amazing. I did the cold cap for 2 courses of taxol and kept mine, now on cyclosphosphdmide tablets and it's thinning a little but hanging in there ! So good that olaparib is working for you and glad you are feeling well. Love, Madeline xx
Hi Julie......Good for you for having a good sense of humor! I was also diagnosed at stage IV....in Sept.2014. I am now 21 months in remission. I'm sure on first hearing that we have this wretched disease, we automatically think the worst. But, no matter the stage, we have to fight.
We don't know what the future holds, but I, for one, will hope for the best and enjoy each day!
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