Feeling like a fraud

hi

welcome to the online community, sorry you've had to come and find us

Back in 2012 I had my first routine breast screen and it was simply reported as 'clear', nothing else. 

During 2010,  2011 and the early part of 2012 I had a bizarre variety of symptoms that suggested something wasn't quite right but none of the tests found anything wrong. 

it's a long story ... but in the end I find myself frustrated by my lack of diagnosis and if that was me in your situation I'd have been apoplectic with rage.

I had to show the surgeon a new tumour that had popped up in my breast literally over night and because he was following the MRI report that had found nothing of note he proceeded to ignore it and performed a mastectomy and implant reconstruction around it

Nobody has ever been able to give me a satisfactory explanation on how he managed to achieve this, even my GP said "he'd have had to cut around it"

I love the fact you did manage to get another appointment with the more sympathetic surgeon, well done. How ?

I felt the same, no sooner had I had it confirmed I'd got cancer than it was all gone, except that for me it wasn't and I then had to go through 6 months of chemo before getting the nothing evident. 

It's weird though, isn't it.  You had cancer, but it's gone now, get over and get on with your life.

But cancer is massive, it's a huge deal, how are we supposed to just 'get over it' or 'get on with it' ?????

In your position I'd strongly suggest taking out private healthcare, if you don't already have it, and then insist on regular checks for any, and I do mean 'ANY' symptoms you have.  That would be a burden on the NHS but if you have private cover it's fine. 

I used AXA PPP and the premiums are not massive, although I need to negotiate before renewing this year and I'm also not that convinced by AXA and think BUPA might be more reliable ...

My breast cancer won't be covered unless I manage two years without symptoms or extra tests but that's in about 2 months time.

Part of the AXA thing seems to be I have no idea what is covered, people keep saying 'knees' so if I need a knee op, I do actually have a sore knee but it's not a hindrance yet.  AND you're not allowed to have even asked the question about something prior to cover commencing for it to be excluded. I truly wish someone would come along and disrupt healthcare like Purple Bricks has property. 

you're not a fraud, you've had cancer held over you like a guillotine and you're reacting as we all do, the grieving process, shock, disbelief, denial, anger, sadness, confusion, blaming, bargaining ...

it's fine, that's what I'm here for, it's what Macmillan is here for

hugs

Carolyn

xxx

Welcome to the online community and I am sorry to hear that you had such an unsympathetic consultant but you've reached out to us now and you can come on here at anytime you have concerns and have a rant .rave or let off steam we will understand and be supportive to you and answer any questions you ask.

Fortunately you've got an understanding consultant who is prepared to keep an eye on you which will give some piece of mind and reassurance for the future.

Why not look on the bright side and think the second consultant has done you a favour he has given you a checklist of things to be aware of for the future and you can without getting paranoid get yourself checked out if anything concerns you.

This really is a safe place to come to and get rid of your frustrations there will be many on here who have had the same experience as yourself and will understand wholeheartedly how you are feeling.

It's not doing yourself any good keeping your feelings under wraps you need an outlet for your feelings and I'm sorry that your husband won't discuss them with you because of the memory of his mother.

Please come back at any time and have a chat.

Ian

Hi both,

a huge THANK YOU for being here - I kind of expected someone to tell me to “suck it up, snowflake!” But you’re super kind to share your experiences with me Carolyn and it’s reassuring.

I can’t believe that they managed to cut around it during your op! I’m a huge supporter of the NHS but it’s clear that not all doctors are created equal. 

I was lucky enough to get the clinic appointment after I received a letter discharging me from the second dr, but both their contact details were on there. Once I’d spoken to nice dr’s secretary he called back and was horrified, asked me to come in. I’m seeing him every 6 months and bloods every 3. He sent me for an MRI for which I had the results just before Christmas and reconfirmed that there was nothing else to find - so he’s been amazing. I’m seeing him again at the end of May but I don’t know if that’s going to be handing me back to my GP now, it’s the first time we’ve met since the MRI. We have another scope booked for September (the three year mark) I mean, he’s been super cautious.

I’m interested in the private health cover idea - we’re both self employed so we don’t get any work perks anymore! I’ll look into that - thank you. Silly things just add and complicate the situation - I feel like I’ve had more than my fair share of allocation of appointments and treatments from the NHS! The private option could help.

In terms of the other doctor giving me a checklist before, everything he was saying was a symptom I’d had, so I hope I’d recognise and check them off again, like you say, now knowing which are the things to really worry about and which aren’t. The real pain was when he said that 30YO’s don’t get bowel cancer and I pointed out that my mother in law was 32 when she died from the same. His response was “you don’t have a family history though” (although I have plenty of family history of other cancers) like lightning can’t possibly strike twice... I can only imagine my husband’s fear that our four and two year old were going to be left without a mum, as he and his brother were. So I understand why he doesn’t want to talk.