I've had a bit of a battle getting here, a colleague recommended I join here and say my bit to see if there's more support.

I found my lump (like a squashed bit of corn with serrated edges) and went the next day to see my GP on the 16th July. As I write this I was not supposed to know my diagnosis until the 9th September! Two months of being held in lue and I'm angry and cross!

I have Ehlers-Danlos so when I was finally at the long awaited appointment I was not able to have the biopsy. I took my eds cards on my lanyard with me but despite trying to educate them they referred to the pharmacy allergist. I then asked to speak to the manager on the phone or their email so I can make representations of why the anesthetist that operated in January on my foot was better suited as a plan for how to do a local was already on his files and was our plan B for not using the general. I was told the manager was on holiday so I asked for the manager that would be responsible in the meantime. I never had a response the that email.

I eventually got a call and told they had a 'solution' and made an appointment. I arrived 2 weeks later and they had no idea the trials and tribulations of what had occured before. They ran up and down the hall way confirming I was ok to have the 'normal' Lidocaine which was cleared by written consent by the allergist team. I was a little unnerved and scared by this point as I had to again consult and then go through the ingredients, I was ultimately the decision maker and that made me very uncomfortable as I had no professional opinion - I can do what the allergist had because I can see what the ingredients are BUT I cannot say for sure if the EDS will complicate and conflate a reaction. 

Half way through the biopsy the woman was chatty throughout and mentioned there goes the bruising as my skin reacted to her biopsying. On the second I asked how many more because I feel unwell. I went into shock and my whole body was shaking I went grey and they elevated my legs. My upper abdomen had cramped and I got the feeling I was going to pass out. whilst I had recovered enough to drive home I still felt unwell and vomited, had diarrhoea, dizziness and shaking with cold and nerve fizzing until about 2am. All the websites said I should have felt well after 2 hours and a friend suggested that they overdosed me because they had not weighed me and I am petite.

I was told the results would be in 10 days. The bruising was horrific and my costochondritis was making everything on my chest hurt, I couldn't find a comfortable spot to lie down. This subsided after a few days but on day 10 I was called and booked in for the 9th of September. I was confused and frustrated why were they keeping the results?! The looks they gave each other during the ultrasound and scans was hard to miss and now they were prolonging the results so I was worrying for longer. I didn't feel it was right or fair! I called back and asked for the GP to deliver the results, the woman seemed to be receptive until she took my date of birth and suddenly was very shut off I knew something was wrong and just needed to know what was being hidden from me!

The GP was a lot more understanding I explained that due to my Autism and the fact that I am unsupported, no one to go with me I am an hour from the hospital they want to give me the results from and it's two weeks until they do that! I wanted the results in my GPs where I was familiar with the area the green spaces and the GP herself. She agreed and booked me in for three hours time. I arrived and was told it was bad news, I asked for more details and was told it's slow growing and therefore classed as stage 1 or class 1. This seemed easy and a relief tbh - the glances the worry the fear and everything squashed by KNOWING! that is the worst thing for an autistic to know that everyone is whispering around you and you are the last one to know! Knowing means I can plan I can stim I can make arrangements. 

I have a dog, a cat a child and it's us verse the world in a village that hates us, with an ex who was arrested and got away with no conviction, I was deliberately put in a position I can't access anywhere or anything with out a car and I have no friends near me. No one to get the milk, no one to help make sure my son hasn't descended into neil from the IT crowd hiding away thinking the world has given up on him as I lie there recovering and feeling like a mess unable to get to the tap or the loo. The nearest McMillian listed places are all turning me away and because I am rural and hard to reach no one is willing it seems to extend their services to help (even past 12 miles).

I've been advised to take someone with me to my appointment .... there is no one. So I think I will record and ask for my diagnosis and prognosis. Since the biopsy my breast has been uncomfortable sensitive and there are not several lumps that all seem angered and inflamed they calm down once people stop prodding.

Is there anything I can do to find me an advocate so i am not being led up the garden path as I now feel I should have had it removed THEN biopsied to avoid the messy issues and repeat surgeries. Was that an option I was supposed to be offered?

Open to any ideas I like to explore all the options so I can say I have exhausted every avenue.