having got the all clear from my scan on the 27th march i should be the happiest girl ever and to an extent i am.. i am so happy that at the moment i am disease free.. as you know i had a tumor removed from my ovary in june 2011 that was 18cm x 11 and cancerous... on further hystology they decided that this was secondary and began to search for the primary but couldnt find it.. there were suggestions that it could have been cervical but no evidence was found with the tests that i had at the time . so it was decided by the mdt team that i should have my other ovary removed along with my womb cervix and anything else they could remove that would no longer make me a woman!!!! so the debulking was done and the chemo started..
i went to my gp,s yesterday because i am not coping well at all with what i am left with im not the person i used to be and i am very depressed, physically and mentally i am a mess,, after dsicussing this with my gp and having some blood tests done he gives me a letter from my oncologist that was sent to my gp.. it goes like this......
I reviewed suzanne today in the outpatients dpt. she has completed 6 cycles of chemotherapy with carboplatin as adjuvent treatment for her ovarian tumor which was of an unusual histology suggestive of a cervix primary.. I think it probabaly was a cervical primary all along given that she had a cone biopsy of the cervix in february 2009 which contained the areas highly suspicious of invasive carcinoma.!!!!!!!!!
now in february 2009 i was told that i needed to have a cone biopsy to remove pre cancer cells!!! i was Never told after that that it was highly suspicious to be invasive carcinoma... after the cone biopsy i just had a couple of follow up smears and was then discharged.. it is now apparent that the cancer that was there had already started to travel and settled on growing on my ovary.... which was then 2 years later found by myself!!!!! Why wasnt i told at the time!!!!! and why wasnt i given treatment for this!!!!! I cant help but think that if i was given chemo at then time in 2009 that i wouldnt have had to have two major operations that have ruined the person i used to be.. please please advise me on what to do here i am so confused..
lots of love suzanne
p.s im sorry that this long winded..
xxx
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Oh my! What a shock, Suzanne. I can see why you are feeling confused and let-down. However, you are clear at the moment, although you will need to maybe explore some support for coming to terms with all you have been through. I always think it isn't going to do me much good, dwelling on what we cannot change, though. Try to concentrate on the "right here, right now" things that are OK or good in your life at the moment. Have a look at the thread on here today about "sunshine", it may give you a smile
but things arnt good in my life right now wendy,, my life has changed dramatically i have no personal life with my partner which im sure he is going to leave me for shortly.. i hate the way i feel and the way i look.. i cant help but think that if id have been treated differently in 2009 things would be so much different .. xxxx
Can only sympathise and send you a hug, Suzanne. I hope you are finding somewhere you can get some support, maybe via your specialist nurse at the hospital. You have been through a lot.
I'm apalled and terrified for you. Hopefully you are seeing a counsellor regularly and it's also good to be part of this site and have the support of your friends here.
There was a time in my life when I had to make a decision about my future and my thoughts were in turmoil. I sought professional counselling but the weeks between the sessions seemed endless. I found it very helpful to visualise all my thoughts on a huge sheet of paper that I kept in the wardrobe hidden from anyone. Anything and everything - and I mean everything(!) was written on that sheet in different coloured pens according to my mood. Over a period of weeks and months I reviewed all those thoughts and explored the ideas and I crossed through all the ones that there impractical, unachievable or just downright crazy. The only ones left were realistic and achievable and I felt much better for that.
I wonder if it would help you to take two large sheets of paper. Write on one 'The Past' and on the other 'Where I'm at Now'. As thoughts come into your mind decide which sheet of paper they belong on. The cone biopsy definitely belongs on your 'Past' sheet. You can add a column to both sheets, 'What am I going to do about it?' Once you've got a few things listed on both sheets you'll be a better person that I if you can fill in the 'What am I going to Do about it? on your Past sheet.
Keep filling in your sheets. In time your 'Where I'm at Now' sheet will become much better reading - especially if you've managed to fill in the second column, 'What am I going to Do About it?'
I'm not a professional counsellor. I'm only speaking from my own experience. Please forgive me if this idea seems completely stupid to you. I just thought I'd share it in case it helps. Perhaps other ladies have suggestions as to how they coped in times of the greatest distress.
Don't forget .... The Rest of Your Life Starts Here!
Annie i never ever think that any suggestions on here are stupid,, i think we all have a unique insight to how we all feel and i think that everyones experiences and advice matter so much..
thankyou for you advice and i may very well do what you suggest at some point.. at the moment i cant help thinking that i need to know why i wasnt given the information back in 2009... i dont know if this is right or wrong but i do feel that i want to know why..
If exploring what has happened will help you, I would ring ovacome and ask how their opinion as how you can get an explanation. A formal letter to the hospital chief may do the trick, but it does take a while to respond to go through such processes, and I suspect you will not get a quick or detailed reply.
I am afraid I agree with Wendy and Annie, and would try to focus on moving forward and put my energy there. I believe 'Relate' may help you and your partner if you are both willing. Other than that, if I were you, I would start to think practically how you could move forward, as a couple or alone.
Truly sorry, Suzanne. I know nothing about your personal circumstances, so I really do apologise if I am way off the mark. I was just reacting to the fear you mentioned. I find if you have a plan, things seem more manageable.
its ok i didnt mean to take offence... im just all over the place.. and i really ont know where to start to try and put my life back together. I know i am very lucky and need to try and concentrate on moving forward but i just ind it so hard.
I am so terribly sorry about this latest development and cannot even begin to imagine how you must be feeling.You poor little mite , how terrible for you. I had somewhat similar "management" "issues" with medical staff. They make mistakes too , and in many cases the handling of the resolution leaves alot to be desired.
However , your health and well being are absolute priorities now. I know that it's so easy to say, but this sort of upset plays havoc with our poor little immune systems. Please please get some help to get you through, go to your GP and ask what your options are.
Couch a letter to the hospital asking for an explanation of why you were not properly informed at the time, in the terms of an 'official grievance'. That way; they have to react within a set ime (usually stated on their website), you will feel that you are doing something to get the answers, and that might help you to feel a little more powerful.
What you are suffering from (in my opinion- for what it's worth) is repressed anger. You do need help to express that, and find ways not to turn it on yourself in depression. It sounds as if it is perfectly justified, and, although we can't change where we are, we can certainly change how we feel about it.
isadora you are so right it is anger i feel and it is pulling me down!! i have to try but it so hard to lift my head and be grateful especially now as it seems someone made a huge mistake in 2009..
i am going to write a letter and seek advice about where to go from here.. thankyou..
thankyou to everyone as ever you have all been here for me i am enternally grateful..
You have all my sympathy and I would be bliddy angry too. When our health is involved and things go more than a bit wrong , we always look to blame someone. I would be kicking down doors and stalking the dox, but that wont solve anything but create frustration and more anger .
Isadora's advice is sound ,she is the wise and methodical member on this site.
Write that letter and show it to your partner and let him know how you need his support more than ever.
Good luck and keep your chin up chuck.
Suzie Que xxxx
It may be that your treatment in 2009 was negligent. (I had negligent treatment, I'm now taking legal action.) It sounds pretty remiss to say the least if they didn't deal with all the cancer then. It might help to contact AVMA (avma.org.uk/) and get advice from them. They might refer you to a solicitor who will probably help you draft your letter of complaint.
The awful thing is that if you have had negligent treatment, you face a stark choice between taking legal action and doing nothing. It is very rare for a hospital to admit to a serious mistake. But you have a right to competent treatment and to be kept informed.
It's quite natural to feel very rough at a time like this. Often depression sets in after treatment has finished - during treatment you are focussed on that. Hopefully your GP can arrange some counselling and perhaps medication.
A final thought is that perhaps your GP gave you the letter because s/he felt you needed to know what has happened.
None of this is good but I hope you're feeling a bit better. Send me a PM if you want any more info about the legal process.
I feel for you, remember how I felt after 1st line. Many of us go through the "if only I, or they had done something sooner or differently" However, I think the advice given by Lizzie and others is valid. Try to leave the stress and sadness behind and plan for a better future.
My very best wishes.
So sorry to hear about this. I am angry along with you about the way you have been treated. I understand what people are saying about moving forward but maybe you have to work this out first. At least a letter/email to the hospital airing your grievances would be cathartic. I did this after some questionable treatment I recieved. I was taken seriously and put in a formal complaint. I did receive a letter of apology and although it did not alter what had happened to me, I did feel that I needed to highlight the situation for the benefit of future patients, if nothing else.
In future do ask to be copied on all letters that go out about you from the hospital. You are entitled to this. You can then question any issues straight away or correct/query anything that is not right.
Dear Suzanne, I do think Sharon has a very good point here. She channelled and focused her anger in order to help other people so it turns what might be a very negative and self-destructive emotion into something positive and focused. Good luck with whatever you decide to do. We can only sit on the sidelines and offer advice. There is huge wisdom in all these comments. It's just a matter now of stepping out and choosing your route. Good luck with whatever you decide. Xx Annie
Thankyou to yo all i value and need all your comments and advice, i have compiled a letter today to the hospital which i am going to post tomorrow. J have decided that this is the best thing to do for me but i have to also make sure that i do not let this lead my life in any way as i know i have to move forward and try to start living again. But i would like a reason as to why i wasnt told and maybe a sorry..
This is so horrid for you. There is so much to deal with and seeing your way through must feel almost impossible. I hope that writing your letter has been helpful - sometimes writing things down helps to sort out our thought processes and to see where we need to go.
I know you want to post this letter tomorrow - I understand this entirely as I did the exact same thing; although my complaint wasn't in the same league as yours. I regret following this course of action. The reply I received was off the cuff and most dismissive. I don't want this to happen to you. Your local hospital will have a PALS talk to them tomorrow or alternatively get in touch with powher - see this link:
They are an advocacy organisation who have professional advocates who will help you to write the sort of letter that gets the answers you want and deserve. You are given a named advocate who will hold your hand through the whole process - someone who understands how the complaints process works and will be on your side and at your side.
I really wished I had known about them before I sent my first letter.
Sometime having enough information allows us to make better decisions.
In the meantime I hope you find some peace and a place to heal. Love and Hugs ((((Suzanne))))
You poor, poor thing. I had the same cone biopsy several years ago and the idea that things might not have been OK when they told me they were is truly horrendous. I can absolutely imagine how you are thinking. I am posting just because one of the things that I have learnt from this site is never to over estimate the medics and to push to understand everything yourself. I'm waiting for U/S on Friday and saw GP last week because I wanted to go through results of previous MRI - it was fascinating - he was truly amazed that I seemed to have an understanding of anything related to what's going on. If i hadn't pushed he wouldn't have explained any of the detail. We had the same with doctors in ITU last year with my sister in law - just didn't explain anything until we pushed and pushed. This doesn't really help you I'm afraid (apart from huge empathy with how you're feeling) but it is a lesson to everyone to push to the end to understand what's going on and make sure you are totally happy that you are informed to the full.
Big hugs and, maybe, as many of the fab women on here have said, try to look forwards.
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