Good Morning 🌄 good news to start but need advice again lol 🥰🤣

[Newbery3]

OK so had my th 4th chemo yesterday and was told my CA125 is down to 24!!🥳🥳🥳 Great news considering I haven't had my debunking yet! So as I said in my last post i had my scan after 3rd chemo on the 8th and expected to know outcome on 9th over the phone oncology but was told my mdt wasn't til 24th so had to wait😮‍💨in the meantime I've asked to get a second opinion with Christina Fotopoulou as private patient just to compare with and she has agreed to do virtual appointment on 29th 🥳 really lovely lady,anyway got home yesterday to nhs letter saying my mdt results would be over the phone on 30th! I always get results day after mdts but this is 6days later again meaning by the time I see surgeon and get tests my operation will have a big gap between chemo also! It took 10weeks to get proper diagnosis and 12 to start chemo because of bank holidays. Any advice on how to push for my results sooner and get them sent over to professor Christina on time? thanks lovelies 🥰

[Lyndy]

Wayhay! Look at you doing soo well… very pleased to hear it! Can your CNS help you get the results released earlier? x

[Newbery3 in reply to Lyndy]

I will leave her a message, I have left a message on my oncologist secretary answer phone too xxx yes great bloods xx

[Katmal-UK]

Maybe speak to Patient Liaison if your CNS can’t help.

[Newbery3 in reply to Katmal-UK]

OK never heard of them🤔 how do I get hold of them? Do I just ring hospital switch board? X

[Katmal-UK in reply to Newbery3]

Yes, Ring hospital and ask for them. Good luck x

[kadabra12]

They forgot do my scan after my 3rd so going for it today after My 4th yesterday. Also got a call booked for the following day ( tomoz) and my discussion is in mdt meeting this coming Monday. I also have appointment for 31st to discuss but tbh normally thry call me prior to go in to fill in my consent forms so u could still get a call earlier. I've got dates scheduled in galore atm with them even my 5th chemo just incase the option is to carry on chemo and not operate yet so likelyhood is you are pencilled in to for early seot for chemo so you dont have a gap or your op will be pencileed in for around then too as prev my op was pencilled in for week or so later after mdt meeting so I wouldn't be too worried they just put slots in subject to change x

[Newbery3 in reply to kadabra12]

Yes I've got 5th chemo appointment but I just want to get on with it now! It feels like everything is a drag 3/4 week wait X

[Morini]

The waiting is so hard, especially when there seems no reason for it. I must have followed similar timings to you but last year because Bank Holidays played havoc with my diagnosis too! Can Prof Fotopolou and your hospital liaise directly to get the info transferred sooner, maybe with your Doctors secretary?

I ended up having about a 10 week gap between chemo and op which made me anxious but all held stable over that time. Best wishes xx

[Newbery3 in reply to Morini]

Well that's good to know, but really want it done and dusted by Xmas for the family to enjoy but I have no control so just hope it's done x

[Morini in reply to Newbery3]

I hope so too, I just had to have an unexpected investigation into what turned out to be nothing thankfully! Just wanted to reassure you that a couple of weeks with no chemo isn't disastrous because my fear was that it would be! Hope your well on the way to post op recovery by Christmas 🎄 xx

[Newbery3 in reply to Morini]

Thank you so much ❤️

[Trickysite]

There is an office that all hospitals have called PALS which is there to smooth out difficulties but I would try to get cooperation on getting your results to Christina direct with your CNS and oncologist first. If that fails to produce goods, speak to PALS at your hospital.

[Newbery3 in reply to Trickysite]

Thank you xxx

[paulamma1]

Hi, I’m in the States so I understood the systems are different, BUT, this I have learned: I’ve got to be my own advocate. When told I’d hear back about an appointment in 5-7 days; I’d phone them the next day. When I left a voice mail; I’d phone back in an hour. When told whatever couldn’t happen until whenever I’d ask “what can we do to have that happen sooner?”. What I wish I knew when I was refused an MRI at initial GP visit is I should have asked her to note that refusal in my chart. Then it’s official.

It’s been an interesting journey. I’ve stayed calm and polite but it is my life I’m dealing with so……..

[Newbery3 in reply to paulamma1]

💯 ! It's hard to keep a positive attitude when you feel like your chasing things to be done! I will ring again tomorrow as I haven't heard back from anyone as of yet xx