update on complete cock up by nhs!

[Newbery3]

Well its been a long drawn out battle from the word go with my whole diagnosis and treatment and as good as the chemotherapy nurses are I have been completely let down by oncology, surgeon's that I haven't even met and the whole thing has been me trying to fight for appointments, scans,results and bloods even! Anyway I've decided that I have no option than to go private for my operation as the nhs mdt meeting last week decided that I should have 6 chemo then operation as they said a couple of lymph nodes could do with more treatmentand also they didnt have capacityto operate!; I questioned this and had 2nd opinion privately and was given a completely different outlook and I am actually more than ready for operation and that I'd had a really good response to my chemotherapy so far and my lymph nodes are clear or shrunk to 5mm! My family are all chipping in to help pay for my operation and when I get well I am definitely taking things to complaint but not sure yet were to start. I'm booked in next Wednesday for my operation so just going to concentrate on getting well 1st. Hope nobody else gets this run around !!

[0462County]

Hello Newbery3

I am so sorry to hear about your horrendous experience. You should complain to PALS and also your MP. I doubt you are not the only one this has happened to.

Hope all goes well with your operation. Glad that your chemo is working.

Love and hugs.

Beth x

[Newbery3 in reply to 0462County]

Thanks Beth, yes I will do, the private consultant even said that nhs England would accept me if nhs wales would refer me but my oncologist said its never been done before and its to tricky! Honestly it's really mentally taken its toll and is hard enough as it is fighting this disease 😪 x

[Realistic]

Honestly l feel for you, and l agree things are not moving like they should be. You really shouldnt have to be paying private but it your health your important. I did the same last month to see a surgeon it was a second opinion best money lve spent can feel.confident which is important some time you have go with your instincts Hope you soon get your treatments sorted

Stay positive and keep yourself well its very important..Good luck sending love & hugs SheilaFxxx

[Newbery3]

Thanks Sheila, yes it makes you think about others who haven't sought 2nd opinions because we put our faith in the professionals! Well operation is Wednesday with Christina Fotopoulou so I'm just going to concentrate on getting well xx Rhian

[Iside in reply to Newbery3]

Terrific surgeon, she did my 2 ops., & am still going 4 years later. Not clear but fighting all the way, good luck you are with one of the Best. CheersIside X

[Lovedogs41 in reply to Newbery3]

Can I ask how you arranged your second opinion with Christina please? x

[Newbery3 in reply to Lovedogs41]

I just rang the imperial hospital number that's on the website and explained that I'd like a private consultation and they asked me to email the admin team with details and brief history then the secretary replied, best thing I've done as I feel like I have a clear plan now x

[Lovedogs41 in reply to Newbery3]

Thanks so much! X

[pants22]

Hello Newbery3 You have advocated for yourself and now Im sure Proff Fotopolou is your very best bet. I have found that despite the oncology services pontificating and self congratulating about their "holistic" services you constantly have to check, recheck, remind and fight.It is a shame and I am a nurse of 30 years myself so had more idea and confidence in standing my ground...I dread to think how many patients get guided along the wrong pathway..just to fit in with protocol etc.

My oncologist has pretty much told me to "let nature take its course" with no other options,ideas. He does not think outside the box. I am a statistic to him.

I am getting a second opinion from Prof Jayson at Christies in 2 weeks.

I still have fight in me, so do you....Go prove NHS Wales wrong. Good luck Sister.

[Newbery3 in reply to pants22]

Brilliant that you are seeing Prof jayson! Good luck 🤞 yes we need to keep fighting and as long as we are strong we should never give up!! X

[Horsesrock]

Brilliant - well done. We have a similar problem up in Scotland - they don’t like you to get a second opinion / treatment in England - essentially because of the paperwork/rebate system - it is complicated. I know you aren’t allowed to critique the NHS but when it comes to cancer it feels like a sausage factory (that’s falling apart). Good luck with your op. Christina really does sound like the best for debulk in the UK. X

[Newbery3 in reply to Horsesrock]

Christina told me on the phone that wales and Scotland are so behind with lists for surgery that they have changed protocol and that's why they are giving 6 chemo then operation, this is our lives not just numbers! X

[Lyndy2]

Just listening to a piece on BBC Breakfast about treatment delays… I think you have made absolutely the right decision. It’s awful and it shouldn’t be this way but you have to put yourself first xx

[Newbery3 in reply to Lyndy2]

Thanks lyndy xxx

[Trickysite]

When you have the energy, you need to make what is called a Formal Complaint to the hospital. That is a higher level than PALS but PALS can tell you how to do it. I did it. But concentrate on you at the moment. Good luck. Emma x

[Newbery3 in reply to Trickysite]

Thanks xxx

[Ova3]

Dear Newbery. It sounds to me like you are on the right path. A word of warning fro me. When negative things happen, don’t spend much time thinking about them. Learn to let that go and turn it into positive, which you have done. If you are a person of faith, I would say “always look for God in the situation”. Negative thinking pulls us down. It sounds like you are on a good path. Stay there. You are being surrounded by good as you go❤️

[Lovedogs41 in reply to Ova3]

Love your advice ❤️

[delia2]

I’m so sorry you’ve had to fight this for yourself and now pay for it when having cancer is already enough of a struggle! But now you’re on track for surgery and will be able to start healing afterwards. Take good care of yourself after and get lots of rest. Sending hugs! Xx

[Newbery3 in reply to delia2]

Thank you xxx

[OvacomeSupport Partner My Ovacome Team]

Hi everyone

I’m so sorry to hear about the difficulties people have experienced and how let down some of you are feeling. We are here to support you all so please don’t hesitate to contact us if you would like to talk things through. You can call our support line on 0800 008 7054, email us via [e-mail] or send us a message through our forum if you prefer. We’re here Monday – Friday, 10am – 5pm.

I hope that everything goes as smoothly as possible for your upcoming surgery on Wednesday, Newbery3. Please do let us know if there’s anything we may be able to help with or any information we can provide.

Best wishes

Annie – Ovacome support

[Newbery3]

Thank you x I'll be in touch x

[Summergold2]

You should not have to have this added stress! That is terrible I certainly hope that going privately will give you peace as that will aid your healing and calm your fears. You are so young to be going through this but I can hear through your posts how frustrated this is and you should be this needs to be addressed as soon as possible Ovarian cancer is nothing to toy with!! Heres to a very successful surgery and to getting to remission and healing! hugs Debbie

[Newbery3]

Thanks Debbie 🥰

[Tulips66]

Hi Newbery3, I am sorry you got the run around, its stressful enough without you having to practically beg for tests but for now you need to put aside your frustration & annoyance , just concentrate on getting through your operation on Wednesday & then your recovery after. I just want to wish you well, try not worry too much about the op just keep thinking to yourself when I wake up the beast will be gone . When you are feeling a bit better let us know how your doing Xx

[Newbery3 in reply to Tulips66]

I will and thank you for your advice and kind words xxx

[quillette]

might want to listen to this - i have a terminal type of cancer - like ivy wrapped around superiour mesenteric artery plus in a lymph = don't worry about me but start advocating for self - it's YOUR life not ours nor those 'doctors'

i tell MD's that its understood i am on the conveyor belt of cancer - 'he' didn't know what to say HAHHA

whatyourgpdoesnttellyou.com...

[NewtonEmma1900]

Just wanted to wish you well after all the problems you have encountered. Your surgeon Christina and her team did my op last March. You are in safe hands.

[Newbery3 in reply to NewtonEmma1900]

Thank you 🥰 getting nervous now but also want it done x

[thejoannabell]

I’m so glad for you that you are able to muster the resources to have a private doctor with whom you feel comfortable to do your surgery. I think you will always be glad you did. My insurance didn’t cover MD Anderson, so my family did the same and we paid out of pocket for my debulking surgery. It has been a load off my mind these past couple of years to feel that I had the best treatment at that time.

I hope that your difficulties with the NHS can eventually be resolved. So scary and frustrating!

[Newbery3 in reply to thejoannabell]

thank you, im in london now and im getting admitted in the morning op in the afternoon! Your message is just what i need right now xxx