Hi all, I haven't posted for a while but I do keep up to date and respond when I feel I can be of help.
I completed second line treatment last August. My CA125 was 23 at end of treatment, however it wasn't all gone. I'd had 11 tumours on commencement of treatment, I still had 5 at end, but they had all significantly reduced in size. I have been on watch and wait since then, well to be exact, I have been watching and waiting as I didn't get an appointment in December as was the plan. I've had to make various telephone calls but eventually got to speak to my new CNS a few weeks ago and updated her on my CA125 as done at GP surgery - in November 32.3, in February 85. I had a CT scan on Monday morning so now waiting for review with the consultant.
I'm off to Amsterdam on Friday morning for long weekend with 4 girlfriends and so looking forward to it. On 10th April, my husband and I are taking our 2 daughters, their husbands and our 4 grandchildren to Euro Disney for 5 days and nothing is going to stop me going! To cap it all off, Stuart and I have booked a holiday in New York in August with my cousin and her husband and I really want go go on that too. I even managed go get reasonable insurance for America through Boots.
I had an interview with the Belfast Telegraph last week and it was published yesterday so feeling pleased that I'm doing something to raise awareness. You can get it on line.
Yesterday I was looking after my little 22 month old granddaughter, Katherine. She is such a wee dote. She'll keep me fit, we were at Sunbeams, a mums and tots group in the morning which she loves, doing the Grand Old Duke of York, the hokey cokey etc.. After we'd had lunch she got up, started turning in circles and instructed me to do the same. If anyone had looked through the window they'd have thought I was nuts lol. To cap it off, when she was going home with her mum and older brother, I was instructed to 'chase the car' lol and I had to do it to please her lol. Stuart laughed when I told him I was chasing their car.
I hope you are all doing OK. To all our members from the island of Ireland, I wish you a very happy and safe St Patrick's Day for Friday. Ann xx
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Ann, lovely to hear about all your travel plans. Hoping this will be me later in the year. Am also planning Amsterdam with friends for a reunion, as well as other trips! Lovely also to hear your tales with your granddaughter, 22months is a lovely age. Things to lift your heart! ❤️
Lovely to have an update and that you are doing well. Enjoy Amsterdam, stay away from the cafes and the 'special' cakes! You'll understand what I mean when you get there! New York is amazing and as for Euro Disney, what can I say but enjoy! It's great for the young ones, and even the not so young ones (my favourite is the Tower of Terror). Glad you have so much planned with your family, enjoy every moment! Good luck for your scan results. Kathy xxx
My favourite is the Tower of Terror too! My eldest calls it the Tower of Horror and gave me a lecture (at the age of 6) about how irresponsible I was to take her on it 😆 My (then) 3 year old absolutely loved it!!
lol we took my grandsons on it aged 6 and 8. They HATED it. It was my favorite ride in Florida and I lost count of the number of times I went on it and I have to admit I dont like rides in general but I could ride that all day lol go figure....
Eldest Daughter: "What were you thinking letting me go on *that*?" [Points finger at ToT in accusing manner]. "What kind of parent are you to think a ghost ride is suitable for a 6 year old?!"
Me: [tiny voice] "Sorry..."
Youngest daughter: "That was AWESOME!!! Can we go again?"
Wonderful to see the special trips planned. I think it helps to have things to look forward to on the calendar. Have a great time this weekend in Amsterdam.
I am finally allowing myself to start looking into a special trip with my husband to Hawaii. We are last minute always, so this is actually more planning than we normally do. Thinking after my last treatment. But will probably not book anything until we get to the bottom of some lingering post op issues.
Hopefully your ct doesn't show anything you don't already know about. I imagine they can squeeze a little treatment in between Disney 🎡 and New York 🗽
Enjoy and if you like, share a few photos along the way 🤗
I love to hear these things which you ave planned and I totally agree we need these goals! Sounds great, all of it. I am determined to get to the USA for a big family trip this July ... could you let me have any contact details for the Boots insurance? Thanks and first off enjoy Amsterdam. Fab place to go for a weekend, Ann.
Hi, I just put in Boots insurance into google and nit brought the site up. All done on line, didn't need tyo talk yo anyone. Very simple indeed. Bann xx
Great to hear about your travel plans and your quality time spent with your granddaughter. Enjoy Amsterdam and let's hope if you need any treatment it can be fitted around your planned holidays. Good luck with the review with your consultant.
I think that even if only one woman visits her GP because of your newspaper article it will be "job well done" but it's bound to be more. Well done!
Sounds fab,travels and all! You are doing so well no matter what.I had my Frankie, 3 year old grandson today,played police cars most of the day,in the garden pushing him on a swing,yesterday at soft play doing most of it with him,so long as we are enjoying ourself and acting mad,what harm is that?
Would just take the advice of your team (only for the New York trip),the others are soon and Europe,if you feel well and get their advice,go for it, you only live once,
I admire you,
Carole xx
Hi Ann nice to hear that you have so much to look forward to with family and friends, nothing would stop me either, you go for it and enjoy it all!!'
What a lovely busy post, so many plans and so much to look forward to. Amsterdam sounds fun and a chance to let your hair down with the girls. Euro Disney with children of all ages will be brilliant, I love Disney. If you've not been to New York before you'll love it and if you have been then it's a bit like going home, I'm there in July for two weeks and just can't wait, it's our ruby wedding so we've really pushed the boat out and are flying first class with Virgin Atlantic that should lower the tone 😂.
Enjoy all your planned breaks, I'm sure if there any health considerations to factor in your team will be able to work around your plans. Fingers crossed this is something that doesn't happen though.
Isn't it great to feel able to play with children, we can legitimately be daft (not that that make any difference with me, daft is always good) I just love playing good old fashioned games with them, unfortunately my two granddaughters are 13 and 15 so it's now more clothes and make up but still fun, good reasons to shop 😊.
I really hope your results are good. Sending big hugs and love ❤️ xx Jane
Enjoy all your planned trips - I love Disneyland Paris! It is so much fun (but be prepared for the queues - it's like any theme park!). Crush's Coaster is brilliant too (if you like roller coasters) and the Ratatouille ride is lovely, but get a fast pass because the wait times are crazy!
Hi Ann it seems you do have a lot planned, I hope the watch and wait will continue for some time. It sounds as if you had great fun with your grandaughter, They keep us going dont they? I think make your plans if the worst come to the worst, you can plan your treatment around the trips. Our onc doesnt mind us having a life and living it as best we can, I wish you a Happy St Patricks Day with more fun and laughter. all the very best
Thanks for posting. I'm glad to hear you have plans for holidays and you're enjoying time with your granddaughter. Grandkids can be so bossy at that age. I haven't taught my 2 year old grandson the okey cokey but will do that next time I see him. When he visits now he demands the yoga mat and cards and we have to do some yoga, which he does at nursery. My CA 125 went gradually up to 500 the summer before last but then went up and down for a while with the CT scans not showing much for several months, so you may be alright even in August. I was walking the Pennine Way a day or two a week and it was summer and I think my body was coping on it's own. I eventually started treatment again in October.
So great to hear from you ! What wonderful plans , and clearly , you are wringing every moment for what it's worth . I love Disney and would go happily with hubby alone ....No grand kids , no small children ....
Watch and wait is hard but the only way is forward , and you certainly do that , setting us all a great example . Posts like yours have encouraged everyone to write their happy stories , so good for all newly diagnosed or awaiting treatment .
Enjoy it all ! You are not so silent , are you ?!!!
No, not really Angela, except for when I was in labour, not a peep out of me lol. Also, when I'm unwell and hospitalized, the nurses always comment on how silent I asm and never want to bother them! Xx
Thank you for your lovely positive post, sounds like you are living life to the full! I will take a look at your article, I live in Belfast too but missed it yesterday. Anything which increases awareness of this disease is to be applauded.
Hi Lesley, we have a Facebook group going in NI and we meet up for Lunch and a bit of craic every couple of months. Your very welcome to join us. Ann xx
Lovely to hear from you Ann. You are certainly making watch and wait a more pleasant experience with all your happy travel plans. You remind us all of carefree days and holidays. Have a great St Patricks day and a successful visit with your consultant. Would love to read your interview in Telegraph. How do I find it online ? Take care
XXX
lovely post, just shows we can have a life outside of hospital appointments!! enjoy your many planned trips. take care xxx
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