Tumours and other things

Its funny how used to being sick I now am. A year ago if you would of asked me I would of said how I hoped this was all a nightmare that I just would one day wake up from. I would wake up and just be a regular teenager worrying about normal things.

But now I am so used to being sick, that I find it accomplishment and a sense of pride that I have just made it through a day.

I am used to have my bloods done, tests taken, being injected, having scary words thrown at me.

Like last week I sat in an endocrinlogy office with a doctor, a consultant and two medical students being told I might have a rare tumour on my pancreas. I fully regretted not bringing my mum into the office with me. Because I cant tell you how hard it is to keep hold of informtaion when its 9am and you have brain fog and ADHD. I tried to remeber important informtaion they told me like when to have the tests, any prep for tests, the plan. They took some time to explain to me like 95% cases are begin not cancerous but as the consultant said "there is always a chance". I remebered sitting on the chair slowly nodding along, making sure I asked the right questions, trying to pay attention.

All while they all smiled at me with the most fixed smiles I have ever seen in my life.

Making no promises.

I left the office after my 10 minute appointment had turned into an hour, to greet some rather disgruntled patients waiting.

My mum was sat in the chair near the window reading off her phone and eating her baked beans from the tins.

I greeted her and said you never guess what, so I told her as we walked through the corridor.

I told her while laughing, I just found it so funny that I can never have a normal appointment where they find whats wrong but instead uncover more things.

I didnt tell her about the tiny chance of being cancerous

Thats the thing I have learnt through the years is how to tell bad news to loved ones in ways that doesnt completely tramutise them. I cry mostly behind close doors, if you ask how I am coping I will tell you it is what it is.

Because the truth is I will crumble on the ground if you ask me too many questions.

Another thing I have learnt that no news isnt always good news. My trust in doctors has dipped when I find out some past doctors havent run the appropriate tests due to my age or presenting as looking "healthy".

Yesterday I sat in a doctors office in the city I live now as a student, and I love them there as they actually follow NICE guidelines and listen to me. I was called in the office and showed her the growth in my nose and sores thinking she would simply pescribe me with something and send me off. But nope she wanted to run urgent blood tests and pesacribe me something as she thinks its related to my immune system attacking my nose. But if it doesnt get better I have to come back in a months to go down the nasal cancer test route. I sighed it was just typically now. I had spent so long not being taken seriously and now I was, I am now burnt out from it.

The bloods she ran she just turned to me and said "I hope you dont have it". And all I did was laugh and push it to the back of my head.

That tends to be how I cope now adays push it to the back of my head, other wise if i think to hard about it I will cry and cry. And the tears will never stop.

Often I hate how my illness affects the ones around me, making me a bad friend, a bad girlfriend, a bad daughter. This unreliable ill person who never gets better, I imagine how draining it must be for the ones around me. And if I need more reminder of this I will have people tell me that I cause my mum stress and am a burden to her life, I will have people tell me my boyfriend must be a saint to still be with me, I will have people tell me how stressful I make everyone elses life. Its almost they think I choose this life.

I can assure you reader I very much havent. I am terrified of doctord, tests and bloods. I loathe stepping into a hospital, I hate beimg prodded and attending appointments. I would very much like to be in a bar or a club then sitting at 9am waiting for someone to take vials and vials of blood for the third time that week.

Another thing I have noticed recenetly is how terrified of my body I am. I often feel so unsafe in my own body, most of my anxiety relates to my body. Its always there like a dark cloud that I carry around with me, never leaving me. When I invite people round to mine I worry that I might have to use the toilet while they are there, what if i suddenly become unwell how do I politely tell them to leave me to rest. When I go round to others I worry they wont have anything for me to eat, what if I forget my meds and snacks, what if I get so unwell i cant get the bus home, what if they see me in pain. What if I have to go to toilet there, what if they dont have toilet paper or its locked and I wont make it in time.

Its hard to describe to people how exhausting the constant anxiety, doubt and unease is. I have to really trust the person to hang out with them incase things go wrong.

In a way I have got used to all this, but in a way its still not easy. I still have hope they might be able to treat me and bring me into remission or at the very least be able to stop from my disease/s from progressing.

I have my fingers crossed.