FEELING SO ANGRY!!!!!!!

Hie (to anybody)

Just feel I need to get this anger out from inside of me, but don’t know how. Iam not very good at crying because it just makes me even more madder!!!

Started of with a pea size lump last year in my right breast. Dr’s not concerned then fobbed off, told I was too young to have BC. No biopsies or mammogram done. 12months down the road lump was the same size of the breast. Official diagnosis confirmed 6 weeks ago. Have since had full node clearance and mastectomy, due to start chemo and have been told to have radiotherapy afterwards as tumour was massive (not surprised as I have had it for a year)!

The bit of good news is that it is oestrogen positive and all my axillary nodes were clear, but will still need the full works as it was a big tumour and the fact I am 33 years old.

I am raging inside, I am so ANGRY with my local hospital, I feel so let down and neglected. I have written an official letter of complaint and have been informed that they are “looking into the matter”. I though I was over the anger but I can’t seem to get past it. I know its no body’s fault that I have this BC curse, but I just feel that someone didn’t do their job properly. This shouldn’t be me, this is not what I had planned for me this year. I thought things were going my way for a change, I thought I had it together. I was doing well in my job, getting the financial recognition that I deserve, my little boy was settling well in school and we had finally saved up enough to purchase our first home… So many things were just right.

I have always been bright and bubbly. the crazy friend who makes everybody laugh, the best person to be around in a crisis. I know I need some sort of counselling but I can’t bring myself to trust anybody since my diagnosis. To me the health professional don’t really care, I feel they are just there doing their jobs, I am one of many, there’s nothing special about me. i am just another female with BC and I just need to buckle down and get on with it.

My friends and family and work people have all been as great as they could be. They all think I am an inspiration, because I am “so brave and positive” AAAAAAAAAAAAAAGGGGGGGGGGGGHHHHHHHHHHHHHH That’s what I feel like saying. But hey that’s me I can’t let the side down I just have to cope.

All the hospitalstaff I have dealt with since the diagnoses are lovely, but then i feel why burden them with my trivial nonsense. Because I don’t break down and cry everyone assumes I’m fine when actually I’m not!!!

Have been keeping a journal which has helped me get this far. Had my first visit to an oncology centre where it really freaked me out that this is HAPPENING TO ME!!!

Hi MouseH

So sorry that you have had such bad news. What were they thinking of, of course you are not in the right age bracket who is i am only 34, 2 kids no family history, fit and well (so i thought) and i got the bloody thing they make me so cross. I had a lump in armpit which came up with both pregnancies told not to worry was probably just glands and because you trust them i never got it checked out, how silly was I. Good news that you have no lymph involvement it went to 11 of mine. Sod staying positive get angry, my mum says that if i treated this cancer like i do other motorists then the bloody thing would go over night.
You have every right to feel angry but there is no going back, try and channel your energy into fighting it.
Take care i will be thinking of you

C

Hi mouseh

Im so sorry that youve been let down by the NHS system. I know its a small consolation but adleast its being dealt with now. I know you say you find it very difficult to cry bit sometimes its the best thing. I find a nice quiet place and sob and scream and i must admit it takes the pressure off a little. I do this in private as i have 2 youn children and im trying to be very brave for them.

People say the same to me about being brave and positive because thats the way we act around other people, but sometimes i want to scream at them and say im not brave im cr!!!ing myself.

You will meet some great people on this site in all different stages of bc and they are always here to listen and give good advice

Good luck to you

Hugs
Lynne

Hi Mouse

Theres not much I can say to make you feel any better but OH MY GOD YOU SO DESERVE TO BE ANGRY AND PIZD OFF!! The hospital say they are looking into it - someone needs to answer for this so make sure you dont take any waffle.

I know what you say about just being a number - apart from my breast care nurse thats how I feel with everyone. I put in an official complaint after my first chemo cos the treaetment was so bad - of course just got a waffle letter back. Have since had chemo in different area and its been much better.

I myself am a childrens nurse and I can tell you - there is such a big difference with the way we treatment children and their families and what my experiences have been of ‘adult nurses’ (sorry if I’m offending any adult nurses out there but this is my experience!) And its not just with me - both mum and dad have been in hospital several times this year and the experience has been the same with them - they and us are often just another number!!

Anyway, sorry to divert away from you. As you say, you know you need counselling but not surprised you find it difficult to trust anyone. You should not let this ruin your future anymore tho - as you will need to go on living your life and try to come out the other end the same or better person than you were - dont let them take that away from you.

I am thinking about you and feel free to rant and rave anytime on here as you will get loads of support from other women.

Take care
Fiona
x

Hi MouseH

I just wanted to say that you are not alone in the way you are feeling at the moment, these are normal feelings after diagnosis and during treatment and many people contact us at Breast Cancer Care, many of whom have said they have felt very angry following diagnosis and, of course, because of your delayed diagnosis it’s not surprising that you are struggling to come to terms with this. However, with help and support, you can begin to start feeling better in time.

Maybe a starting point would be to contact our helpline for confidential support, a listening ear and advice on counselling services available to you during this difficult time.

The helpline number is 0808 800 6000 and is open Monday to Friday 9am-5pm and Saturday 9am-2pm.

I do hope you find the helpline can offer some support for you.

Kind regards.

Katie

Moderator
Breast Cancer Care

No wonder you are ANGRY. YOu have every right to it, and if you don’t get a reply from the service who is “looking into it”, you should write to them again, with copy of the letter you already sent, directly to the higher responsible officer (look up the name, either in the hospital, or in internet… ).

The doctor who misdiagnosed you was grossly misinformed. You just have to look into this board, to see how many younger women are hit by this illness! My own mom was ill 35 yrs ago, she was 34 at the time. She had to insist insist insist because her own doc said like yours - no worries, just forget it, you are too young. Luckily, she asked a friend doctor for a prescription for a biopsy - and it WAS a blasted full on cancer.

Have you thought of giving a piece of your mind to the doctor?

Hie lillth, sparkler,honeyybee43 and zjlove

Thank you for being my somebody’s. I wasn’t so sure anybody would write back so thank you all sooooooooooooooooooomuch. Anyway today is a good day, I guess yesterday was all bit much after having my inital appointment with the oncologist and seeing all these other women at different stages of their treatment really hit me hard.

I felt so much better after letting out all this rage, I feel Im back on track again. I discovered a way to make me cry, that is crying to music! I put on a couple of really sloppy cds and that got me going and made me feel much better. I know in the long run I do need to see a “professional person” about all this but I guess I am ok at the moment.

Sparkler, like you I am a children’s nurse, and I cannot get over how different adult nursing is to paediatrics. I have very low expectations of the Nhs, but I know I need to move on.

Thank you all for your words of encouragement and kind thoughts, I am going to turn all those negatives into positives, I have so much living to do!

Hugs

Heather

Heather

Am so glad to hear you are feeling better today. I cannot believe you too are a paediatric nurse - and you too are of the same opinion - my colleagues feel the same!

At the mo I am handling everything ok,but I too know I will have to get professional help in order to move on in the future and live my life to the full again - but there are so many appointments just now it is something that can wait. all I know is after this is all done I just want to grab life and not end up bitter all the time about why me etc!!!

Take care
Fiona
xx

Hi Heather,
So glad you’re feeling aso much better today, but treat yourself gently, we all know it can swing the other way at a moment’s notice.
I’m in the middle of a complaints procedure with the hospital where I’ve had my chemo (long story). I just wanted to say, if you didn’t know, there are legal frameworks for complaints.They send you that initial confirmation that they’ve received your complaint, which has to be within a certain number of days. Then they have 25 working days to investigate it and come back to you with a response. They should have informed you of this, and also what to do next if you are not happy with their response…
There is also PALS (patient advice and liaison service) - I haven’t used them, but with hindsight I think it would have been helpful to contact them on the days when everything was going wrong, and they may have come and helped sort it out when i was too upset and angry to risk challenging the staff.
Fortunately my Onc is on my side and has asked for a case meeting with the hosp admin and head of nursing, and we’ve been invited along too - daunting but I think necessary to go.
Anyway, I hope you keep feeling better, and can find some friends who give you the type of support you need and who you can rely on.
Love and a hug
Jacquie

Hi Heather
You have every right to be angry. I too didn’t fit the right box - only just 37 no history etc and feel that my GP was a little too laid back to the extent that I booked my own private appointment without telling him and guess what i have aggressive cancer with lots of lymph involvement.
On the positive side congratulate yourself that your assertive character has got you a daignosis rather than just taking your GP advice.

I really hope you can move beyond the anger. I know it’s not easy - I feel had I been as casual as my GP I would be walking around now totally oblivious to the fact that I had BC.

Give yourself a pat on the back for your preseverance and move your energy to kicking this cancers a**.

Good Luck

MuddyXX

Dear Heather - I have just been reading your postings and my heart goes out to you so much I just wanted to send you a great big hug! Of course you feel angry and it is great that you have been able to say that and have a bit of a rage. But more than that I hope for you that soon you will be able to put those really negative feelings behind you as part of the “what has happened up to now” story and be able to go onwards and upwards from here! In the end I have found that feeling angry can’t actually change the past and just leaves you feeling upset and tense. For myself I just want to not waste any more energy on negative feelings or things I can’t change. It’s hard to do but I’m really going to try to face my surgery, chemo and radiotherapy as a journey that I didn’t plan on taking but hey, I’m on the train so will try to get some positives out of it. Do, do talk to someone about your feelings. There may well be a counsellor at the cancer centre you are attending, and they will really understand you. Good luck and please keep posting. Thinking of you. Sarah

Hi Mouse

God what a story - that is awful and you have every reason to feel angry, bitter, upset, let me tell you something, however you feel is OK, you are allowed to feel however you feel. Don’t worry about the “positive” c…p, its awful and doesn’t help at all. You need to know that you can feel however you want to feel, you have every right.

As a little aside - make sure you keep notes of all your treatments, diagnosis, what is said to help your case when fighting this awful mistake. Maybe you could try and get one of the newspapers involved, I know that the Sunday papers have been running various articles on bc, maybe you could get some interest from one of them, I know that the Sunday Times ran a big article at the weekend.

Don’t give up your fight- you deserve some answers and the best possible care that is available to you.

Keep in touch

Good luck Jackie xxx

Hi Heather,
i’ve just remembered there was a lady posting on here only about a week or two ago who’s compiling info on cases of misdiagnosis. She’d love to hear from you and may have some good advice. i think it happened to her too.
All the best
jacquie x

Just reading this, and thinking the same as Jacquie posted… if you feel it will help you, see two posts by Supersue on the current issues/hot topics section…she managed to win damages. It doesn’t cure the cancer, but hopefully will make this type of mis-diagnosis end! I also had an original “fob-off” when I first went to the local GP’s, but went back 4 weeks later due to pressure from family, thank goodness. I was very angry to start with, and will be complaining about the GP concerned once I’m ready, not for any other reason than to prevent anyone else having to go through this.

Hope you find some peace
Shannon
xxx

The Health Care commission recently published something on how complaints were dealt with in the NHS and I seem to remember they were dealt with universally badly. for example there doesn’t seem to be any evidence that they change anything after people complain. I complained a lot as I was misdiagnosed too and I still feel they just stuck together. They don’t like giving bad news either which is understandable but I felt the way they went round the houses when I was finally diagnosed was really stupid as I wasn’t treated like an adult. I used to hurl things round the kitchen and scream at the top of my voice in the car. I still feel about 90% of the anger I had was caused by the crass treatment I had. Cancer was nothing in comparison

Mole

Hi Heather

Just seen this thread. I really feel for you, knowing that you were so vigilant (like we are told to be by the health professionals!) and they are the ones who fob us off when we go to them with concerns.
I had the same “you’re not in the high risk age group” (I’m 34) blah blah blah, put me on slow track which resulted in a 3 month wait to the breast clinic.
How ironic is it though that once we are diagnosed treatment is mega quick - don’t get me wrong, the speed I was whisked in for my lumpectomy still astounds me (less than 3 weeks from dx) but the referral doesn’t happen anywhere near quick enough for younger women.

I have to agree with you & sparkler about the marked difference in child & adult nursing approaches. I’ve never had an operation before & I thought that when I was in hospital for cancer treatment I would be “nursed” ie, taken care of, cared for, looked after, empathised with? Nah! After coming round from the op I was v light headed & kept passing out so was told to stay in bed. I asked one of the nurses (heaven knows what grade she was but she brought the food around) if she wouldn’t mind topping up my drinking water & she barked back “you could always get it yourself”. I felt so cross and a real nuisance.

I hope you can get your head around everything soon - keep up the soppy music, it works wonders.

Take care
xx

Hie EVERYBODY

I am still so overwhelmed with all the words of encouragement and support that all you beautiful people have posted. It makes me feel so much better and gives me the determination to know that I am not alone. I know my family and friends are being very supportive but sometimes you need comfort and reassurance from pepople who are actually going through the same thing.

Jackie - I did actually write a 5 paged letter to the Chief Executive of my local hospital and also sent a copy to PALS. I did all this the day before I went in for my masectomy. I did receive a letter of acknowledgment from them saying “” we are looking into the matter" and that we eould hear from them in 25 working days. I think the 25 working days will be at some point next week - so who knows. I did read the thread about someone receiving compensation from her local hospital because of late diagnosis.

All I have ever really wanted was an apology from someone to say YES WE MESSED UP, but I guess thats too much too expect!

Anyway Like all you lovely people have said CONCERNTRATE on the positive, and thats what I am going to do! I start my chemo in 2 weeks, so I am conserving all my energy for that. My best friend and I are going Shopping in New York for 4 days so thats all I am looking forward to at the moment, am not going to let this whole BC thing get me down.

I have had so many friends show their support, some people I only see once year, come round with a dish every 3 days or so. I jokingly said to my cousins that If I had known that having BC would result in me spending more time with friends and family, I should have had it sooner!

This forum has been one the best things about BC, thank you all for taking time to read and respond to my threads.

Big hugs all around
Heather

Mouse,

My story does not sound as horrific but is similar. I am 32 and my GP just fobbed me off making me feel like I was a bit of a nuisance. She actually had the gaul to ask me whether I wanted to be referred for a needle test as she said I was not in the right age bracket and the lump did not feel cancerous!! It was only by sheer luck a few days later when my GP rang me and said she had found out because I was over 30 years old that it is an automatic two week referrel for a needle test. Thank god for that but even when I had the test the consultant told me that it was benign and I had nothing to worry about. Tey sent me for an ultrasound to be 100 percent sure but she made it sound like it was the norm. It was only when I went for the scan that another doctor told me the needle test came back inconclusive!! Complete incompetence, I could not believe it. I am starting chemo on Monday and am starting to get anxious. Also just found out last week my mum has been diagnosed with Womb cancer that has spread to her lungs and spine. Everything feels an absolute nightmare at the moment. Just want to crawl into a bawl for the next few years and come out when it is all over.

Thinking of you
M
x

I had a lump in my breast for about seven years - was always told by Well Woman Clinic etc that it was a blocked milk duct so didn’t worry about it. Found out in May when went for screening in area that was cancer. My breast care nurse said they should have refered me as there is no way to know just by touch. If only. We put so much trust in our GP. I am angry but what’s done is done. i need my energy now for this bloody awful process of treatment. I know that if I let myself go down the road of anger and trying to get some satisfaction from the system I will just be stonewalled and the frustration will consume me. So It is so maddening - my God, these people hold our lives in their hands but I would just say think about the emotional toll all that anger is taking on you - can you afford to give them any more of your energy? It’s very hard to walk away but even if an individual would acknowledge their mistake they cannot for fear of being sued.

All the best

jesse

Hie

Morri - I totally understand where you are coimg from with the anger. I am so sorry about your mum and I know you have alot to deal with right now. I know you are probably trying to be brave for both you and your mmum.

you know what - if you feel like going to bed and having a good cry do it- it really works. Sometimes we keep all our emotions bottled up and it just eats away at you - you have to release the pain.

I will be thinking of you on Mon when you start your chemo, I hope you have a good support system around because it makes such a huge difference. Let me know how you get on with the chemo, I start mine on the 5thof Dec (we can compare notes)!

hugs Heather