This blogs been a while in coming to you, mainly because i still don't have all the information I need but also because i've needed time to process myself what the actual fuck has happened to me recently. This last month has been hell and to be quite honest i'm surprised you haven't found me chattering in a straight jacket somewhere. After an awesome result from the scans in february that the new treatment was working and for the first time in 3 years i had shrinkage! actually real life shrinkage! my liver and lungs were responding to the new treatment. However, as much as i was putting a happy happy face on it all i knew something wasn't quite right, my leg was giving me pain that had been put down to my limp and walking stick, however Marsden said to be on the safe side lets get you back in earlier and have a look at the leg. My legs funnily enough have never been scanned since the beginning because nothing was ever there and why add extra radiation to the pot when its not needed. So off on my London Town travels i went with my nephew to show him the sights and sounds of a chelsea MRI scanner, it wasn't great news, there was a new lesion on my knee and a pretty good dose of disease progression in my spine. Basically my vertebrae were crumbling and in full on drama style i was in a radiotherapy machine within 24 hours for the Spinal Cord Compression. Id gone from hero to zero overnight, but they were saving the best till last in that the scan also showed new clinical fracture of the femur and pelvis and if. i didn't stop weight bearing that femur bone was ready to pop right through the pelvis.......broken bones = no treatment, no treatment = lung and liver growth, Allana, get off your legs and back in that wheelchair immediately, do not pass go, to not collect £200 and start planning for a wheely new life. I know I joke a lot and it's dark but its how i handle these things, however this time i'm admitting it's a struggle. I just felt so angry. I've been patient, worked hard, not given in and it didn't matter what id done, the cancer was always gonna win. I had my blast of radiotherapy and it hit hard, whether it's because the cancer is very active and exhausting me with its spread or that my body has had too much radio, I know for the two weeks after i could hardly look after myself. getting up for food, showering, not constantly crying or feeling so alone were par for the course. I was starting to see the dark place and I couldn't blame myself really, the mind can only take so much until it wants to hide away. There was day, then there was night and then day again and that was about all i could process in my head cavern. Then one day, something was off again, my foot was going numb. Just the toe to start with then the ball of the foot. by the time it reached my ankle i was getting a bit concerned. The foot was cold to touch and wearing a very chic shadow grey colour to finish the ensemble. Few more hums, erms, well, maybe i should ring someone. I was on a backboard in the ambulance within an hour. I had spinal cord compression and fracture of the T12, next to go was my bladder. Im telling you, it's the weirdest thing when your bladder is full to pop but the body can't remember how to empty it, 16 hours, 8 catheter attempts and 4 sets of hand down there and eventually something worked, whether it was fear when they started bring glass objects out or the fact that from my flat angle and morphine I was "eventually" pissing myself at these nurses trying to figure out how to just take the piss from me! I spent a few days in acute oncology room, laid flat, in agony with only slight neck movement. The wonderful staff came in to turn my carcass every couple of hours to stop whatever rot it is that sets in ( note by tone of written voice at this point i'd had enough of the rollercoaster and wanted to get off). And that's when it happened. That point in your life you know you won't forget, the smell of the room, the people in it, the touch of their fingers on my arm asking if anyone was coming in that day to visit me and if not did i want to ring someone. so i laid a while and thought this is one of those talks that requires a certain someone and as much as i love my nephew dean to bits, close as brother and sister i really do not have the foggiest clue why he came to mind and then when everything rolled out i knew the universe had sent the exact person for me at that moment. I listened to them break down this and that and spread and the cord compression and then i asked her to stop and said how long have i got?
Maybe 3 months.
Fuck. Shit. what? no that's not right have you got it mixed up? shake of head, rub of fingers across forearm.
But my treatment is working, who told you this? is this the marsden? shake of head, rub of fingers across pink gown. There's a spot of blood on there from the canulars constantly falling out, bet they get through a shitload of stain removers here.
So how's this gonna happen then? can you break it down into the tiniest of details to explain the process? which bit goes first? and yes i did actually say that but to be honest I didn't listen after, i said ok i got it and i'm fine can i have a cup of tea please. At that point and for the rest of the time i was in the hospital this pain came right across my nose and strangely every time i type, talk about that point the pressure of this. aches. Shortly after Dean arrived and they took him away to explain things to him, he was amazing and straight to the point of what did i want him to do? we sat made plans about who to tell, how to tell, what to tell but the whole time we spoke all i heard was a voice, my own in panic whispering "the boys, the boys, my boys". It was still quite an eventful night as the oncology team at this local hospital had decided to take me off my cancer treatment from the marsden and for the first time i spoke loud and I think they heard the "NO" in the next room. It seems if you decide you want to continue trying to live you have to sign a form saying your going against their wishes so if i want to take the medication its not their fault if it does/doesn't work. In my mind i still had to remember this is EHE we are talking about, its weird, its aggressive, it sleeps and i go to sleep that night knowing i was accepting nothing until i spoke to my Marsden team. I didn't really sleep anyway, on a truckload of steroids i just wanted it to be 9am so i could ring my clinical nurse in London. I did the big snitch thing sounding like a 13 year old me " yeah and then they said that and that and can they do that? i don't like this make it stop!" For a slight break in hysteria Alison my CN did state in her amazing scottish accent i've come to find so sing song a very loud "What?? but your treatment is working, we need to see what they are seeing" and there is. where the signposts of confusion began. Two different ideas of progression, one confused cancer crow.
I had a few more days in the hospital while i repaired and also to get things put into place for me when I got home. Life is a little different at the moment, a new norm i suppose until i know which sign post im following. My team at the marsden don't seem to be ready to stop quite yet and in their opinion while ever the treatment is working on my liver and lungs then the bones can go play for a while, although they are currently looking into a new bone treatment and i'm waiting to hear back from them. They also arranged for the Royal National Orthopaedic Hospital to look at my hip to see what can be done even though there is a lot of radiotherapy damage to the area. However while all this goes on i have been put on what is called a "fast track", which basically means all systems go to care for me in my final 12 weeks. I read that back and realise that was actually given almost 2 weeks ago now, it's already tick tock tick tock and to make matters worse I have made up this awesome song that never goes away...
"my head's a shed a shed a shed, my head's a shed. My head is a shed a shed a shed, my head's a shed". catchy huh?
So i am now under palliative care and it really is special, the people, the plans put in place. I met my Barnabas Hospice nurse Lizzi and we bonded immediately, even agreeing under other circumstances we would have been great friends. She made a lot of what had to be discussed easier but is it ever really easy deciding where you want to say goodbye to all the people you love? Even if its 12 weeks 20 weeks or 200 weeks when you have an incurable cancer this is always something your going to have to face. Eventually. So im sucking it up buttercup and rolling with it, no matter how much my heart is breaking every day. Feeling that pain a little worse, wishing for ice cream for my mouth sores, falling asleep eating toast. The eternal optimist in me is screaming its not real they messed up you will be here forever but i'm not going to be and shit needs facing.
I have a list of things to do, ideas the hospice team suggested and im getting on with them. I still keep thinking they gave me 18 months and that was 3 years ago so surely i can do it again, but at what point do you stop getting a time top up? I will have friends that say maybe i'm giving in. That would be easy, giving in, what i'm actually doing is spending every bloody minute hedging my bets, backing myself both ways, can't necessarily win but i can get a place, a touch, a chance? I should hear back from Marsden next week, i dont have the nervous tickle of it was all a bad dream, your going to live forever, because this week i was asked a question that keeps going over and over in my head.
"Are you at peace with this?"
Maybe. Sometimes. Possibly. Another 3 ways on a confusing road sign. What I am is delicate, scared, so very sad, exhausted, confused, in pain, angry at conversations I've had to have with my sons, words i never wanted to tell them.
So, am I at peace with this?
I'll get back to you on that.
🙏🏻Namastay Safe My Friends🙏🏻
