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Unbelievable Updated Update

Morning ladies! Well its 8 days since my debulking op was cancelled, sending me home having waited in the hospital for 51/2 hours, dehydrated and totally P****D off. I have not been given a new date so have instead just completed cycle 4 of chemo rather than do nothing. I have rung various different people trying to obtain a new date but just get told that the operating theatre is in high demand! As time ticks by I can see that I will be starting cycle 5 before anything has been resolved. As I am using private health insurance the NHS pledge of giving me a new date within 28 days of my cancellation date does not apply, very annoyed that I am being penalised for going private in an NHS hospital, which we chose to use to prevent delays and lets face it all us ladies want a treatment plan to be processed quickly! Time is of the essence!! I was also told that once I had completed 3 cycles of Carbo/Taxol that I would have another assessment with a view to adding Avastin, that assessment has not happened, so not feeling the care at the moment! I cant seem to get past emailing or telephoning Surgeon/consultant secretary's with no luck, thought of just turning up at the next MDT meeting but thought that I might get arrested! If you know of a proven complaints procedure that you think could help me move forward please do let me know. Lyn xx

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OMG. This is so frustrating for you but, sadly, oh so common too. Most people know my thoughts about the NHS so I'll keep tight lipped but it's not good enough and you should get answers. Who do you complain to? Goodness only knows. It isn't my country anymore but there must be some sort of independent body that can intervene for you. So much gets missed or neglected and never spoken about. I hope you get further forward very soon. I feel privileged that I don't have to complain as I don't really like doing so. It's just more pressure and anxiety that I don't need. Good luck xxxx

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This is so bad , you must be so frustrated. Don’t worry about the Avastin bit for the moment you can’t have it anyway within a certain time of the op as it’s a blood thinner . Do everything you can though to secure a new date . Turning up at MDT , that Id love to see. Xx Julia xx

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Thanks Julia - the whole admin side of my care has been frustrating, last minute appointments cancelled, appointments made that I don't need, test results lost, scanners broken, blood test results not processed in time. Guess I have just been unlucky and feeling very sorry for myself today, think I will have to go and treat myself to something disgustingly expensive! Have a good weekend Lyn xx

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We are allowed to feel sorry for ourselves sometimes , we are dealing with a lot of sh*t . Go on treat yourself , having a good spend up always helps . XxJulia

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Thanks Kryssy - just need to get it off my chest sometimes, it is so frustrating not knowing what is going to happen and when, patience was never my strong point and I find it hard to think about anything else, so completely consumed at the moment. I also don't like complaining but was hoping there was a way forward to get a confirmed date, something to plan towards if you like, but will just have to play the waiting game. Lyn xx

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It does rather look as if going private but using NHS facilities is working against you, especially given when the surgeon said he couldn’t find an anaethesist.

Is it worth going back to your GP? Where did you find this surgeon? Does he do NHS work as well? What would happen if you reverted to the NHS?

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Hello - yes I have considered converting back to an NHS patient. But under the NHS you don't get to decide who your surgeon is and I want it to be the one I already have, its not his fault, not anyone's fault really, too many sick people and not enough beds. Sad but true. Lyn

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I knew who my surgeon was going to be. Try getting your GP’s help, I assume he helped refer you to this surgeon. What is the GP’s advice ad to what you should do now. Are you based in a large city? I find it odd you cannot be given a fresh date even if it’s for a different hospital. Insist on an appointment with the surgeon. Take someone with you, who knows the whole story, it’s easier for someone to advocate for someone else, rather than for yourself, especially if you don’t like complaining. Make sure this man is aware that it is the fault of his staff to manage your appointments correctly. The only thing that would appear to be forgivable is the first cancellation, and even then there’s something odd about or so it would seem.

This is so important. You should push and push and get someone to advocate for you.

I don’t know if there’s the equivalent of the NHS’s complaints team, PALS, for the private sector, maybe do an internet search or ring this surgeon’s office and ask them. That also make them realise they need to take action.

Good luck!

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Sadly PALS wont represent private patients. I wouldn't mind any date even if its after 6 chemo, just a date is all I really want. Sadly seems to much to ask for, I just don't understand how they don't know what they have available for me, or anyone else that gets cancelled at the last minute.

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I’m in London at a large hospital and I had some choice of surgeons. I was assigned to one initially and after our first meeting knew that it was a no go. I found them arrogant and condescending. Almost smirked when I asked a question. I did some research, called and asked if I could be transferred to the care of another surgeon in the same hospital and they were happy to accommodate. She has been absolutely brilliant!

I’m guessing that if you convert to the NHS and request a particular surgeon, they will do their best to accommodate you.

It’s appalling that you aren’t getting better communication from your private provider.

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So sorry to hear you are having all this aggravation. It’s the last thing you need at this time.

Can I play devils advocate for a moment?

In my experience of the NHS there maybe delays and frustrations but things do eventually happen. The up side perhaps is that you are continuing with your chemo so in theory your tumor tissue is shrinking so surgery will be optimized.

I understand your anger as my own debulking surgery was delayed twice but I do not believe for me that this had a negative affect on the outcome.

Have you spoken to the Ovacome Helpline to get their take on the clinical implications of your surgery being delayed? Depending on their opinion it may strengthen your case or give you some reassurance.

I admire your determination but worry that you may forget to look after yourself whilst you try to fight the system.

Best wishes

Juliax

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Hello Julia I am sure you are right and the op will eventually go ahead, you are also right in that I am constantly winding myself up over the whole scenario. That all said my CA125 is coming down so I am moving in the right direction, just not as fast as I had envisioned.

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That’s brilliant. Focus on that and take your foot off the accelerator just a little so you can get into a good place for your surgery. I know it is not easy. I too am instinctively a fighter particularly where I see disorganization or incompetence it drives me insane but sometimes you have to put your own well being first.

Lots of love from a fellow fighter!

Juliax

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I was about to post something similar to Julia's above.

At this stage continuing with the chemo is no bad thing in relation to your upcoming ( it will come!!) surgery.

In fact many women have all 6 chemo treatments before surgery . It should help to optimise the outcome in theory... try to think of it positively even though it seems a highly messed up complication between NHS and private in relation to what is/ not permissible.

Seems designed to add to stress....

deep breaths.

Janet x 🌈

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Thank you Janet - I am feeling more positive about the eventual outcome, I must admit I thought that I needed some cycles left over for after the operation to "mop up" and six was the max anyone could have. I guess they have a plan just a shame they cant share what it is. Lyn

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Just to add another thought to the mix........ a friend of mine who is in her seventies had her debulking operation privately in our local Nuffield Hospital including having a stoma done, so two surgeons. I tried to do likewise with my different but in -the -same- team surgeon and he wouldn’t let me as he said there was no HDU. Anyway they set up a special nurse for her and adapted her room and she was fine and came through it brilliantly. You could always ask your surgeon, but you might prefer to be in an NHS hospital.

I am so sorry you are having to cope with this horrible situation and send you love and best wishes. As others have said, the extra chemo session may have made a difference. Xx

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Thank you - unfortunately the surgeon I want does not operate out of a private hospital, he comes so highly recommended from my gynaecological oncologist that I am loathed to move to someone else that I may not have confidence in. xx

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Hi Lyn,

I had all my treatment privately and can understand your frustration at what is happening to you.

If you choose to stay with that surgeon, not operating in private hospitals, you will have to take pot luck with a window in the NHS hospital and they haven’t been that reliable so far.

If it were me, I would do a bit of research and find an excellent surgeon operating in private hospitals and see if you can get referred from your doctor.

I would also get advice from the Ovacome helpline to see if they can help.

I do hope you have someone to lean on and maybe be your mouthpiece.

I don’t know what area you live in, but if you are near London, You could p.m. me and I will let you have the name of my oncologist and gynaecologist/surgeon to see if your insurance covers you,

Regards, Carole xx

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Hello Carole Thank you for the info, what worries me is the time scale involved at starting over, back to GP referrals, and lots and lots of tests. I am going to give it one more go and although I know there is no guarantee that I wont get cancelled again, I want to believe it will be ok in the end.

On a lighter note I read your profile and wondered if you still arrange "meetups" in Sevenoaks, I am near and would interested in attending your next get together. Lyn x

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Hi Lyn. A group of us from the south east meet up every three months and you would be welcome to join us. We used to meet near Riverhead but now go to Pembury, near the hospital. I live in Maidstone so not far from you. Where are you getting your treatment?

Jenny

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Hi Jenny

thank you I have PM you. Lyn x

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Hi Lyn,

Just want to say from initial referral to op was 3 weeks for me and I live in Orpington.

I don’t meet up anymore, I look after grandkids and am really busy getting on with life, it works for me being Ned for 3 years.

Don’t know if anyone else does either, but there should be a support group through your hospital, or, if you wanted to post as I did, I’m sure there would be ladies interested.Also Ovacome arrange days, it depends on where you live, if you want help, Im here,

Carole xx

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Hi Lyn. I just read that your 125 has come down this is a good thing,I know waiting for surgery is hard but a good outcome could be that the cancer is shrinking in the mean time.

Hope you hear soon about the surgery Take care Lorraine xx💙💙

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Thank you Lorraine Hope you are well, pouring with rain and freezing cold here! Lyn x

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Sorry you’re having all this stress Lyn however I’m sure if you contact another surgeons secretary such as the amazing Prof Christina Fotopoulou in Hammersmith then you ask to see her as a second opinion you won’t need to start from scratch she can obtain your scans and results etc from your current surgeon. It’s your right to ask for a second opinion too!

Someone the other day posted her contact details on here but sorry chemo brain won’t let me remember who but you can e mail her directly to ask for an appointment soon. She appears an amazing surgeon an I really wish I’d have known about her before my denulking surgery!

Best wishes

Bev xx

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Thank you Bev - waiting for a "window" appointment is not what I expected from private health care, I don't even get the right to be added to a NHS waiting list, the likely hood of another cancelled op is high. I don't believe that NHS hospitals should take on private patients if they cant accommodate them. Lyn

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Try not to worry too much, my first attempt at debulking was cancelled at the last minute (I was in my gown and ready to go) as there was only one ICU bed available and two of us needing it. The other was a 14 year old boy and his op was his only chance whereas I could have more chemo - in my view it was a no brainer that it went to the boy over a 66 year old woman. I had three more chemos before my op as they had the theatre and surgeons booked for weeks ahead and to squeeze me in would have meant delaying someone else. However there was good news - the chemo shrunk the tumour on my spleen and I didn't have to loose it as I would have done with the earlier op - every cloud has a silver lining.

I can't see why they can't give you a new date though even if it is weeks ahead - keep making a nuisance of yourself until you get it would be my advice.

I have found that it is a shortage of nurses that is the problem in my area even though they have the money to recruit them and I can't see that going away quickly. At one point there were 2 of us in ICU with at least 8 empty beds as there were no staff!!

Good luck and let us know how you get on.

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Thank you Jenny - glad you got your op and it turned out to be for the best. All the best to you. Lyn

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Hi Lyn.

So sorry to hear you're debulk surgery was cancelled. The same happened to me and it blew my mind. So much, that I requested counselling. The anxiety and frustration can be overwhelming.

I received another date about 6 weeks later. I completed 6 rounds of carbo and taxol. (I was on Avastin, however this was stopped in readiness for op). Surgery went very well, optimised by chemo shrinking tumour and reducing any other evidence of disease for surgeons to clear up.

My recovery also went very well and I had a further 2 cycles of chemo for the mop up.

This is a tough time you. Delays are so frustrating, however it does sound like you have a good team of professionals, despite admin. I'd love to be a fly on the wall at MDT meetings. Hang in there x

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Thank you - I am still awaiting a date and am really hoping it is not going to run into weeks and weeks for a new date! I am having a nervous breakdown already. I am glad to hear that your surgery went well and that they allowed you another 2 cycles of mop up chemo. Have a good day Lyn x

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I felt like this. One minute you are being told what The Plan is: you assume this is the best way forward, carefully thought out and tailored for you. Then something changes and it all goes, just do it this way instead it’s not as if it makes a blind bit of difference anyway.

No wonder we start to lose confidence at times.

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Exactly!!!

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