I don’t even know what to call it

Friday 27th September, 2 days before my birthday I attended the oncology clinic for my CT results.

The CT scan I’d had 6 weeks prior, I assumed that no news was good news, if it was bad they’d have called, surely? Well that’s what the radiography team told me..

So I’m sat in the waiting room, where I’ve spent many an hour shitting myself, sleeping, bored, contemplating life... 

That day I’d forgotten my I Pad, I’d planned to catch up on Power, but instead I’m clock watching. My appointment time comes and goes, one of the nurses comes out from the clinic and amends the board, Oncology Clinic delayed by 60 minutes..... brilliant, so now I’m here waiting with a load of people past retirement age, all looking at me wondering if I’m in the right place. Then my bottom lip goes

I’m called in.

Fuck.

I sit in the room with the registrar, she asks the general questions, how have I been, am I in pain, any new side effects, how am I coping with my current treatment? I reply all is well, (I can’t really moan that I fucking hate the menopause, I feel like an old lady, the hot sweats are awful, I spend most of my days feeling disgusting and an absolute mess, I have a baggy hormonal stomach, my hair and nails are shit, my mood swings are insane and I wish for just one night I could fall to sleep  relatively early or just like a normal person, without the use of sleeping pills, alcohol or CBD.

The she ever so casually tells me that there has been some changes to my most recent scan.

What the fuck.

Ok. Wasn’t 100% prepared for that.

No one has called me, the only reason I have an appointment today is because Arron made one for me. 

she then tells me that she’s unsure of the next stage as it hasn’t even gone to MDT and says that she will go and find out, leaving me alone.

With the report on the screen.

Fucking shitty fuck sticks. 

Well.

She returns and tells me that it needs to go to MDT the following Thursday, and they will have me back in clinic the next day, and the hands me a tissue.

I hand in my appointment card to reception and burst into tears, she’s lovely and tells me that They’ll write to me so I don’t have to stand in oncology reception crying. I then proceed to the toilet and throw up. And cry. And when someone else comes into the toilet I put my hand over my mouth so I don’t make a noise and when they leave I cry some more. 

Time passes and I become angry, I decide to go back into the clinic and demand to see my Consultant. I do a bit more crying and before long I’m sat in the quiet room with a cup of tea - even had sugar in it. 

My consultant calls me through after another hour or so. 

Christ this is such a long winded story.. bare with me.

She tells me yes there have been some changes to my spine and pelvis. She reminded me that they were never 100% sure if it was bone mets, she also said that it might not be, but also that we might never know for 100%. More tears.

Then she told me that she wanted to discuss it at MDT but was away the following week, so she would delay it until she was back (which is actually today - 2 weeks later). If after MDT they’d decided my treatment should change, she would personally phone me, if nothing would change, she would see me at my next scheduled appointment in November. Knowing that I was due my bone injection the following Thursday so asked me to get cancer markers done via a blood test. She then asked how I was, how Arron was, what I was doing for my birthday, told me that if she could prescribe champagne, she would. I did some more crying, and she very kindly prescribed me a short court of sleeping pills.

I cried all the way home. Met Arron at home and drove to London for my birthday weekend.

After lots of fizz and Karaoke we were back home and impending doom set in.  Thursday I went for my bone injection.

Bloody waiting room again

An hour and a half passed, I see a friendly face, one of the chemo nurses, she calls my name. In I go,

Niceties over, I’m told that I’m all good to go a head with my bone injection. This means that my Vitamin D and calcium are all good. I nervously ask about the cancer markers.....

The nurse takes a moment to look at the computer and says that she can’t interpret the results. 

Part of me is relieved because I get more time in a non terminal world. The nurse inside me (yep it’s there somewhere) tells me that the computer system would flag up shit results and she’s not telling me. She’s lovely and says that she will get a specialist nurse to phone. She said that she would hand deliver my name and number to her. Probably because at this point I’m crying hysterically and causing a bit of a scene. On the up I’m told that my kidney function is now back in the 90’s !! (Post Ibiza it went down to 60ish...)

I have the injection, say bye to everyone, Do a little cry and head home. And wait for the phone call.

The phone call never comes.

Today my scans were seen at MDT. My oncologist didn’t call. That’s good right? Or is it bad news but she’s seen that they’ve accidentally booked me an appointment the following day (tomorrow).  Or does it genuinely mean that there’s no changes after all to my scans which means no changes to my current treatment?

I waited all day for a phone call. Never came,

This is good right? Or is it?

I’m absolutely our of my mind. My mom asked me to call her last night, my first thought was that she’d somehow found out something and wanted to speak to me. Then I was messaging one of my friends and I convinced myself that because she works for the trust, she 100% knows something but can’t tell me.

I’m actually insane.

I’ve lost it.

I’m fully aware of this, and yet I can’t stop.

It’s now 1am, and there’s so sign of me getting any sleep tonight. I want to hide. No actually I want to jump on a plane, see everything, go everywhere. Sit in the sea in 7 mile beach and watch the birds catch the fish, the. Meditate and watch the sun set.

Tonight might actually be the last night before the chaos starts once again.

I’m stuck on a merry go ride, I want get get off, but I can’t.