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.

Is it any wonder

To say I’ve been a nightmare lately is an understatement.

Massively.

To be honest I don’t know how I’m still married.

Feeling fabulous one minute then smashing anything I can get my hands on, all happening within 12-24hours a part, seriously. Absolutely crazy and irrational, some days I cried at the thought of even getting out of bed, I didn’t want to see anyone or do anything, which is not me at all, in fact, if I actually went to work and earnt some money I would have happily have checked into a hotel for a few days/weeks. My kind of behaviour is very selfish, poor Arron, he works so hard and stupidly long hours and on top of that he is doing a masters in Law.

It’s nothing I can put my finger on, just how I feel, and it’s hard to talk about becuase my cancer train is long gone, apparently. People are now bored of hearing it. It’s been years, I should be grateful, I’m lucky.

Any who, as lucky as I am, I think it might be down to the biopsy I had taken recently, and my jaw continuing to crumble through my gum preventing me from having the bone injection for my “bone mets”, (the saga continues), my kidney function plummeting to 55 and wondering what joy dialysis will bring me, seeing a registrar for the first time in clinic and hearing her say over and over that I do have bone mets doesn’t do anything for your mental well being. That teamed with the ever looming 6 monthly CT scan, and having not had the bone injection for 10 months now, if it is mets then it will be spreading everywhere by now, so I did the only logic and sensible thing.

I cancelled my CT scan.

Then earlier this week I was feeling ok. So I decided to re book, rational me knows that I’m delaying the inevitable, I’m going to have to have the scan at some point. If it has spread then surely it’s better to know sooner rather than later? Or is it? Who knows. 

Then I remind myself that these 6 monthly scans haven’t changed at all in 5 years.... and I think about the lovely bone biopsy I had that came back clear, and the surgeon who told me on the phone was very clear in telling me that, so I was on a high for a few weeks, then I went back to the orthopaedic hospital for the check up on the wound, and saw a different surgeon to the one that phoned me.

He wasnt as convinced with the lab results. He said it was like having a bag full of oranges and one lemon, it’s likely that you’ll pick the orange, it doesn’t mean that the lemon isn’t there....

This is your life.

I’m trying, I mean I’m really trying, but inside I’m screaming.

Am I bipolar? Or is it a combination of the many side effects of some of my daily medication?

Is it any wonder I like the odd glass of champagne.

Get me to that swim up bar.

Five years on

In July 2014 I longed for the time to pass, I longed for 2,3,4,5 years down the line. At least then I’d know, well I’d either be all good or, well dead.

Today I went to see my oncologist, well I saw a registra I’ve never met, she was keen to tell me all about my bone mets. I tried to stress that the biopsy came back clear, my actual real life oncologist (consultant) has always said that she didn’t believe that it was bone mets, my initial scans were exactly the same as the one that got reported on upon my diagnosis and were dismissed, my bone scan are all clear, and above all I have no symptoms.

Nope, apparently I have bone mets. I’ve not had a bone injection for 10 months becuase my incompetent dentist decided to pull my tooth, so now I have to wait to get yet another CT scan to see if the “bone mets” have increased or spread to other organs, I think this is CT No 16.

This whole thing is wearing very thin. Most days now I want to stay in bed, the light inside of me is dim.

I’ve had enough.

Seriously.

What if

What tonight was your last night?

You’re last night of feeling “ok”

Might be alien to some but who’s felt like giving up or felt like this could be it? Not in A dramatic way, but had that news where everything changes?

Would you be brutally honest?

Would you spare everyone’s feelings?

What would you say? 

What would you do?

Imagine what you’ve done today - is that what you’d hoped for your last day? 

The gift that keeps on giving

Tuesday morning I woke up to a parking ticket, I blame the man down the road who feels the need to have FOUR cars and a bike and an overnight visitor - and only ever parks one on his drive, I’m appealing it but anyway not a great start.

Then I went to the hospital, good old Burton Queens aka my second home (the hospital I didn’t even know how to get to days before my diagnosis / I could get there with my eyes shut now) for my 6 monthly CT scan, joy. As per they don’t give anything away so I’ll have to wait for my appointment in December for my results and spend the next 6 weeks panicking every time my phone rings #scanxiety YAY. 

So that was fine, on my way out I decided to nip to the dental to chase up my referral from months ago - as in May time. Apparently I’d missed my appointment for 31st October so they’d discharged me. Funny that, because I didn’t get a letter or a text, they then admitted that some of the letters hadn’t been sent so it wasn’t actually my fault. Bless the receptionist she went above and beyond to get me seen that day by a consultant dentist. 

 Right, finally getting somewhere. Before seeing the dentist I was sent for an x-ray of my mouth, which I’ve already had at my own dentist (and paid for) but I guess they have to check. When I went in to see that dentist she was surprised to see the root was still left in my gum and asked me if they’d ever attempted to remove it, obviously I said no.  She then asked about my past medical history obviously I was in there about half an hour, I got the usual oh my God you’ve been through so much oh my God you’re so young blah blah blah. I told her that I have bone

Injections for suspected bone metastasis, to which she replied she was absolutely disgusted with my dentist as in fact he should never have removed my tooth, due to the circumstances this is something that should only be done in the hospital by consultant dentist such as herself.

Brilliant.

I should have never had the bastard thing taken out and it’s probably cost me over £300 and 7-8 courses of antibiotics.

so what’s next? Oh just a little explorative surgery on my gum so now I’ve got to have my gum cut open to see what’s going on and then check it hasn’t gone into the bone, so it could mean that I have now got to stop having my bone injections because I’m at risk of my jaw wasting away.

That’s fine, clearly I don’t want my jaw wasting away but what’s going to happen with the suspected bone  metastasis? without the monthly bone injection (if they are in fact by metastasis) they’re going to fucking grow and spread.

Today I received a phone call asking me to attend hospital on Friday this week for a CT scan of my face excellent, I think this brings me up to about 20  maybe 25  scans in the last four years. So now not only do I have to wait for my full body results just before Christmas I’ve now got to wait-and-see if my jaw has been affected,

Also not to mention that I now have a lovely gap in my smile line and I’m guessing no one will come near me to put an implant in.

I think I’ll stop there I’ve rented enough and im running late for my menopause implant, smear and flu jab.

One final note though .....

can anybody recommend a good fucking dentist????

2018 what happens next

So far...so good...I guess ....so why does it feel like a ticking time bomb? 3 + years since it all “ended” and yet the end sight feels light years away. It’s over isn’t it? I should be moving on.... how is that even possible when every little little thing takes me back to that place, tired? Must be cancer, back ache from sleeping in a tent - must be bone mets, gum that won’t heal - must be cancer, ache in the back of my heel - must be cancer ...

Sounds stupid right?

So did a tiny indent in my left breast months after loosing my baby.

Is this my life now, yes.

I do I do I do

Just got back from MY wedding rehearsal, MY wedding!! I still can’t quite believe is happening - but it is in 3 more get ups.

Wow

Who’s have thought it- not me, defiantly not Arron but yet here we are. Wow, I feel like the luckiest girl in the world, the first time I saw Arron was in a night club (he knew me from school but I don’t remember... infact he came to one of my house parties -sorry Mom and dad).... I remember thinking that he looked like Brian Friedman and that he was way out of my league... fast forward 6 months and we were in Blackpool together - the place of romance obvs ...

Bloody hell, I’m actually getting married, like an actual grown up.....

Friday 1st December

Almost ready to go set up at the hall, Ive had some of my bridesmaids round doing the “last minute” (most of everything that needs doing oops) jobs.... and drinking fizz, Arron,bless him has been bullied within an inch of his life but Jas got all the blue jobs done and got the champagne in -played. Next up is to decorate the hall, I don’t feel nervous at all -os that strange? Maybe I will later, I feel like I should be, maybe it will just hit me at some point... probably when I see my dad. 

Right we’re off to the hall, wish me luck....