update: Hello everyone.. so most of you know... - My Ovacome

My Ovacome

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update

suzannehadenough profile image
37 Replies

Hello everyone..

so most of you know about me going to see my consultant to discuss some mistakes that i thought had happened..

well basically there has been a lot of things that have happened that shouldnt have happened (his words not mine) And he realised my worst night mare on tuesday.. It seems that i had cervical cancer back in 2008 after a Letz procedure it emerged that i had traces of Cgin1 and Cgin3 this apparently should have been followed up and wasnt.. In my medical notes there is refference to this procedure in 2008 and then underneath there is in big bold letters a note with an arrow in 2009 saying THIS SHOULD HAVE BEEN TREATED IN 2008..

the pathology on that tissue also says its clear of any cancer but that same block of tissue was re examined in 2011 and IS NOT Cancer free.......... my head is in a spin.... the Consultant who has given me all this information is not the consultant that i saw in 2008..He told me straight that this is not on... He also said that if it had been treated back then i would not have had to go through everthing i have since 2011.. I would not have had a hysterectomy (or at least not a full one ) And i most probably would not have had chemotherapy...

What am i supposed to do to process this information!!! i feel so angry and i just dont know how i will ever have faith in anything else that i may need in the future..

A very upset and realing

suzanne. xx

love to you all. xxx

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suzannehadenough
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37 Replies

Hi Suzanne

Well what can I say? I am devastated for you it is very hard to get your head around this.. and probably need help to do so... I really am so sorry and wish I could help..I wish I could point you in the right direction.. but I am shocked and feel for you..I just wish I could give you a real big hug..I am sending you my love..special thoughts x G x :-(

suzannehadenough profile image
suzannehadenough in reply to

Thank you Gwyn.. I need all the hugs i can get.. Even cyber ones..

xxxx

in reply tosuzannehadenough

Hug coming your way from me. I'm speechless!! Lord knows how you are going to deal with this. Get all the help and support you can and try to stay strong. I can only guess at how angry you are feeling, but don't let the anger eat away at you it can be very destructive and you must look after yourself first and foremost.

Love Chris x x

That's absolutely infuriating, Suzanne. You must be gutted!

Am I correct in thinking that you are in remission at the moment? If so - or even if not - I would strongly suggest that you demand counselling (at their expense) to help you to deal with the anger. Do express it, and allow it, as it can be very harmful if repressed.

It sounds as if you have valid, and supported (by the Consultant) grounds for a claim against the hospital. Put in a formal complaint and contact Macmillan about legal advice and paying for it. Then make up your mind that you are going to bloody well show them by getting well and maintaining your health.

Very best wishes,

Isadora.

suzannehadenough profile image
suzannehadenough in reply to

Thank you isadora.. Yes i am in remission at the moment.. I agree that i do seriously need counselling.. And I am going to trt and speak to a solicitor as soon as my head stops spinning.

Thank You..

xxxx

I also had a very much delayed diagnosis, I am taking legal action. If you want to consider a suit, please contact AVMA (Action for Victims of Medical Accidents) first of all. avma.org.uk/ They will put you in touch with an experienced solicitor near you.

Legal action should be a last resort - but in general hospitals will not pay compensation unless you sue. The Health Service Ombudsman can order compensation, but it's a fraction of what you would get thru' a claim.

Also, legal action isn't for the faint hearted. In general you cannot get compensation unless your chances of surviving the cancer went from more than 50% to less than 50% because of the delayed diagnosis. Not a pleasant prospect, and also one that changes with time. I started off with a very poor prognosis but because nearly three years have passed without a recurrence, my prognosis is now much better, affecting the case.

Also, you can get some compensation for having to have chemo, and some for distress caused by the delay.

It is very difficult. But it sounds as if the hospital might not put up a fight. Because potentially you could get a significant amount of money, it is worth thinking about.

I absolutely understand where you are. Time will heal, and so will talking about it.

in reply to

Hi Chrystyn

I am so sorry that you have been through so much.. this is a very good comment.. and I am sure it will be of help...I wish you well love x G x O-) :-)

suzannehadenough profile image
suzannehadenough in reply to

Thank you your advice is invaluble to me.. and i am very grateful.

I am so sorry that you have been all you have too.. I hope your case is settled soon and i will you keep you updated on mine.

thank you again..

xxxx

iamstillme profile image
iamstillme

Suzanne this is terrible i am so sorry this has happened as we put our faith and trust in the medical profession . you must feel all sorts of emotion just now and needs to come to terms with these and also past is past and sadly nothing can change this . if it was me i certainly would be seeking legal advice/ reporting the specialist to the gmc and most important if you felt counselling was an option . sending a great big cyber cuddle to you

lots love

Ally

suzannehadenough profile image
suzannehadenough in reply toiamstillme

Hi Ally.. Yes your right i am feeling all sorts of emotions. I am as i type in my office crying about it all..

Thank you for the cuddle i really need it..

xxxxxx

wendydee profile image
wendydee

Oh Suzanne,

I can't begin to think how you must be feeling. If you have the strength for a fight, I would say go for it. I know Macmillan have people who can advise. Makes a very valid point about getting counselling to help you through all this. They may also be able to give you some advice on the Ovacome helpline.

I just wanted to send you a big hug, keep in touch, won't you. We can offer sympathy and suggestions maybe. Love Wendy xx

suzannehadenough profile image
suzannehadenough in reply towendydee

Thank you wendy..

I need the hugs

xxxx

wendydee profile image
wendydee in reply tosuzannehadenough

Hugs for you ((((((xxxxxx))))))) xx

Hi Suzanne

I'm so sorry you are having to deal with this and what the others have said seems good advice. I can relate to your comment about how to trust anyone in future, and it is so important to feel that you can. When I was being followed up for the breast cancer that I had in 2010 last year I began to develop vague symptoms, blood tests were marginally suspicious. I had substantial weight loss and abdominal pain. My consultant did send me for a scan on my liver but other than that did nothing, even though I asked for a full body scan. In Feb this year I was diagnosed with Stage 4 Ovarian cancer and as I have gone through the surgeries and chemo, I have found it really difficult to accept anything the Oncologist/surgeons have said without solid proof (xrays, scans etc). This has been horrible but is getting better. It sounds like the new consultant has validated what you have said and been through, and has been honest with you, where I think some would have been more equivocal. That seems like a good building block for some trust.

Thinking of you

Moniquex

suzannehadenough profile image
suzannehadenough in reply to

Thank you for your kind words.

xxxxx

Solange profile image
Solange in reply to

Monique, so sorry to hear all you've been through and send you my sympathy.

Love, Solange

in reply toSolange

Thank you Solange

Dolcie profile image
Dolcie

Hello Suzanne

I do know how you are feeling, mine I know stems back from 1998 but only found out a revised diagnosis last year was taken in2005 for gallbladder op when they found a mass . Which was called a sarcoma kept an eye on for 5 years then a scan showed nodule growing.went in feb last year had it removed plus hernia repair and appendix removed. Sent off for biopsy ! To be told6 weeks later is not a sarcoma but ovarion cancer . Now I have to deal with the fact it has spread and to top it all it's a rare form doesn't respond to any treatment. Can only be surgically removed. But what I'm getting at is they have all said if I had hysterectomy in 1989 it would not have spread, but trying to prove it has been very traumatic but am so angry I want someone to own up. Good luck Dolcie xxxx

suzannehadenough profile image
suzannehadenough in reply toDolcie

I am so sorry that this happened to you too.. I hope you are ok.

Thank you for your kind words.

xxxxx

Solange profile image
Solange in reply toDolcie

Docie, I'm so sorry to read what you, too, have been through and can understand your feeling that you want someone to own up. These things just shouldn't be happening !!

With my sympathy, love, Solange

MargaretJ profile image
MargaretJ

Hi Suzanne!

I am apalled! Dolcie was obviously not told that sarcoma is another name for cancer! I was diagnosed late but cannot blame anyone other than myself! I just thought I was getting old!

Do demand counselling and follow up the legal suggestions!

M

suzannehadenough profile image
suzannehadenough in reply toMargaretJ

Thank you Margaret I will be doing that as soon as my head stops spinning..

love suzanne

xxxxx

LizK profile image
LizK

How dreadful! What an awful predicament for you to face - do you fight the medical authorities and thereby put yourself under more stress or try to get on with your life and come to terms with your anger? Very difficult whichever way you decide to proceed. There is no doubt that you've had appalling treatment and the doctors were negligent. Take time to weigh up your options and get lots of advice. My heart goes out to you - good luck!

Liz X

suzannehadenough profile image
suzannehadenough in reply toLizK

Thank you liz..

xxxxx

Anne-2 profile image
Anne-2

This is absolutely appalling, Suzanne. I had diagnosis after surgery but the surgery was delayed- only by a couple of months. This was because, and I quote, 'slipped through the net'. I very quickly replied 'Aren't I a big enough fish?' which they took as an attempt at a witty response but I was fuming.

Go ahead, get counselling and make them pay. I did not pursue a case against my local hospital as I did get seen by a leading specialist after my GP intervened but really I should have made a 'noise' about it least.

What annoys me most is that there are all these campaigns about catching things early so they are treated earlier, and even yesterday in the local surgery I found the OC poster barely visible, having been partially covered by another poster!

Big hug,

Anne xxx

suzannehadenough profile image
suzannehadenough in reply toAnne-2

Thank you annie.. I am going to do something about it once my head stops spinning..

xxxxx

Solange profile image
Solange

I'm so sorry, Suzanne, about your treatment, or lack of it, I should say. There's not really much I can say, or advise, to make you feel any better. Thank goodness you now have a decent Oncologist on your side. As everyone else advises - do try and get counselling to help you cope.

Wish I could say more. Just hang on in there and hopefully, after a while, you will find the anger will subside a bit and you'll be able to start having happier, more positive thoughts and it doesn't take over your life. I feel for you so much !!

Love and best wishes, Solange

suzannehadenough profile image
suzannehadenough in reply toSolange

Thank you so much Solange..

xxxx

Jan76 profile image
Jan76

Dear Suzanne ,

Oh ! what shocking news ..so very sorry to hear this .

To learn this news is just terrible and that fact that it could have been prevented too .

You certainly do needs some justice in all of this if you have strenght for it you must go ahead with it .

Sending you a hug ..not much I know ..but so thinking of you at the moment xxx

Love Janet xxx

charlie12 profile image
charlie12

Hi Suzanne

You poor little mite , what a horrific revelation for you ! I cannot imagine how you must be feeling right now. It definitely sounds as if you have a very strong case for initiating an action for damages.

As you know I was unhappy about what happened to me , but it was absolutely nothing compared to your experience. Pursuing a complaint and dealing with the doctors was even worse than the illness.It was all going on a year ago and it was truly awful.

All I can say is that time really does heal things. A year ago a "good week" for me was not sobbing my heart out Monday to Thursday. Now I can barely believe it all happened. You will be the same, and probably many many times better in a year , honestly.

Definitely ask for emotional support . I'm certain that a counsellor will have dealt with many people who have been the victims of medical negligence before and this will make things more bearable for you.Concentrate on getting over the shock before you make any big decisions one way or another.

Try and get in a few treats for yourself this weekend and get some exercise outdoors if possible. This really does help.

Sending you a massive enormous hug

Love

Charlie xxxx

VickyEm profile image
VickyEm

Hi Suzanne

What a truly horrible shock for you, you must be distraught. I would take this as far as you could legally, and the counselling will be very helpful too.

I had a bit of counselling earlier in the year, and my therapist said that she did not mind if our meetings consisted entirely of me ranting on for an hour, so I think now could be a good time for you to start even if, initially, what you are saying to them does not actually make much sense. Sometimes you just have to get it all out there, then you can start to make sense of stuff.

More cyber hugs coming over: @@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@@

Vx

suzannehadenough profile image
suzannehadenough in reply toVickyEm

Thank you vicky...

Im crying as i read everyone kind words..

xxxx

wendydee profile image
wendydee

Hey ..... Stop crying, have a hug (((((((xxxxxxxx))))))) now, don't start again!

Try to enjoy your weekend a bit. Have you any treats planned? See if you can think of something really nice that will make you feel happy, even if it's only for a little bit of time.

Thinking of you,

Love Wendy xx

Whippit profile image
Whippit

Dear Suzanne

I'm sending big hugs and hope I don't make you cry more. Sounds as though you do need to seek some help with this and I do think the hospital that has been part of the catalyst for all so much heartache should be paying for this. I wish you luck and love and I know you'll find a way through the emotional maze you're currently negotiating.

love Annie xx

jennybutler profile image
jennybutler

high Suzanna glad you are in remission, i too was nearly 2 years getting diagnosed and due to that had to have debulking and 6 months chemo,also in remission, now for 18 months, but boy these doctors make me sick, if I did my job like that I would be sacked.I diagnosed mysef with carpal tunnel 8 months ago but my doc. thought it a trapped nerve stupid b---h eventually had op. for it but too late no feeling right hand and lost thumb muscle just had left hand done as well, thank goodness ok. also have a grumpy angry grandson to cope with, give me strength 16 years old and very difficult to handle but takes my mind off my health, take care dont cry any more,smile and take all the hugs being sent. love Jenny xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

iamstillme profile image
iamstillme

Hi Suzanne . Hope you are keeping your chin up and getting head around all of this .If your teenage daughter is like mine she will keep you busy but also keep you strong as this is who we fight for . Not mainly ourselves but our beautiful children

love

Ally

Eleni profile image
Eleni

Hi Suzanne

What a dreadful amount of mess to get your head around! As has been suggested, I would talk to Macmillan for advice but I'd also contact your local PALS (patient advsiory and liaison service). All hospitals have one and you can launch a formal complaint through them; I've used them and they are really helpful and on the patient's side.

The sense of loss and anger you must have, must feel enormous and I can only say that I'm sending lots of hugs and hope that you find some support with all this.

LOL

Eleni x

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