Fear not, I am still alive and kicking… just in and out of a sleep coma since the New Year. I am SO TIRED all the time. Its relentless. I’m actually tired of telling people how tired I am. However, I will write about it, as that’s all I have for you guys.
Firstly, those of you who follow me on Instagram (ktwarrior_princess) will have seen my regular updates and know that in the middle of January I got to stay in my own ‘SUITE’ at the Savoy in London and see a show, courtesy of The Willow Foundation. They are an organisation who arrange special days for young adults under 40 with serious illnesses.
I took my sister with me and we had an amazing weekend. A double bed each in the master bedroom, a hallway to the living room and a beautiful bathroom all to ourselves. A polaroid camera was lent to us from the Beaufort bar to take pics as a keepsake which was extremely thoughtful. In a nutshell we had afternoon tea with rose Moet, unlimited supply! A fruit platter delivered to the room. A trip to the theatre to see ’42nd Street’ (Amazing and a must see), courtesy car back to the hotel and drinks on them in either the Beaufort or American Bar. We went Beaufort as was very Art Deco. My cocktail cost 195 (can’t find the pound sign!) and I could taste every penny! DELICIOUS. Then the best night sleep followed by Savoy breakfast that included full English, juices, teas, coffees, pastries and muffins!. We had a tour of the ballroom and then a courtesy car took us to the station. That’s a quick summary, so go to my Instagram page if you fancy seeing photos. It was one of the best couple days of my life.
It was after this trip that I got a cough. I caught it from the theatre and I know this as half the audience were coughing and spluttering. As I was immuno-compromised it was inevitable I was going to catch something.
As I began to feel better I went to see my pal for a PA session. He has been so supportive and helpful throughout this shitty time and I’m forever grateful Mr! So the plan is to get my strength back first with a few ‘simple’ exercises and gradually improve my posture, breathing and fitness ready for surgery. It’s going to be a LONG process! Not only because it turns out I have no balance! he made it look SO EASY! seriously, I should have filmed me, it would have made your day! hehe, but also cos I’m too friggin tired. I plan on going back to him, but with only a few days between chemo that I am OK, those days are now becoming less and filling up with tiredness. I need to push myself to go as I reckon it will actually give me more energy. I will go next week… if he’ll have me back!
So with tiredness come grumpiness and emotional breakdowns. I have cried more in the past week than I have since I was diagnosed and even then I didn’t cry… I cry at the mobile phone advert because I like the music (the name has gone from my head), I cried in the park when Harry Styles single came on the ‘radio’ (I never downloaded it myself, honest!), I cried when then English girl couldn’t go ahead with snowboarding due to injury in the Winter Olympics, I cried when my dog wouldn’t do a poo and it was freezing cold outside, I cried when I ran out of milk, I cried all through ‘The Tunnel’ series… its not even a tear jerker!, I cry at ‘loose women’ (mostly because I can’t believe this has become my life for now!), I cried when my eyebrows finally became a few hairs – I’m an egg head and I’m too tired to draw them in half the time! and most embarrassingly, I cried down the phone to Amazon because the delivery guy didn’t leave the parcel even though I had buzzed him in the door!!I mean hysterical sobbing people, not just a few tears, oh no, I had a melt down and the poor guy had to just listen to my sobs and occasional words I managed to get out in-between! Bet he thought I was ‘well precious’. I also cry for absolutely no reason what so ever!
But I have never cried because I have cancer.
Another side affect I struggle with at times is pain on my side and back – The side is my liver screaming out to me and the back is just sleeping weirdly. But the doctor kindly gives me Oxynorm that sorts me out. Now I blame my oncologist for this next part… Oxynorm also bungs you up and mellows you out so he suggested I take these instead of anti-drepessant as the chemo I’m on gives you terrible tummy. The anti-depresent is for the panic and anxiety I get pre chemo and scans. So I take oxynorm (an opioid) instead of the anti-depressants and they make me feel nice and chilled, sometimes I may take one because I’ve had a shit day but hey, gotta get my kicks somehow! I joke that if cancer doesn’t kill me, prescription drugs will! But hey, that’s the in thing, right?! hehe
On a different note, I saw my oncologists registrar today. Turns out Cyril has been playing up and my tumour marker has risen. Basically, those wth cancer have a CEA level that gets monitored through regular blood tests. 0 is a healthy human being, well non cancer person!). My highest has been 450ish and the lowest, which was in December when the scan showed the 3cm shrinkage, at 96. Today they said the last test on the 29th Jan showed it has risen to 115. Not a big leap, but enough to keep an eye on it. The aim is to see what the level is after today’s bloods and then go from there. Ultimately it means the cancer could be angry, a bit aggressive or just a blip. My levels tend to rise and fall, I’m known as ‘trouble’ in the unit as there is always something wrong! That name has followed me round my whole life! lol.
So I’ll find out Wednesday if they want to bring the next scan date forward. The pain I’m getting on my right side, my liver, suggests it may be worth doing this, but in all honesty, I’m scared. I’m scared it has grown, or spread, or multiplied. There’s a name for this fear within the cancer community’ and it’s called SCANXIETY and it’s real thing! The fear before a scan cannot be explained, but it’s horrendous.
We also discussed my tiredness. I’m on 100% chemo, so I’m getting the full whack every cycle. Normally they start with 70% but because I’m young and otherwise healthy, they went in hard. I’m now coming up to cycle 10 and they suggested dropping the level to 80% which is normal at this stage as the chemo accumulates and hence the tiredness becomes debilitating. However, I refused and will continue at 100%, I will plod on in my glazed over gaze and chemo fried brain, Cancer can FUCK RIGHT OFF.
And finally! I am organising an event to be held on Saturday 21st April (hopefully at Sankey’s but TBC) in Tunbridge Wells. It’s ‘The big fat CRAP event’ – Quiz, Raffle & auction with all the money going to Bowel Cancer UK ‘Never too Young’ campaign. Local businesses and traders have been extremely generous and donated their services for auction and raffle along with friends. I’ve been overwhelmed by everyone’s generosity and support. Tickets will go on sale through eventbrite once the venue is confirmed. If anyone reading this has something or knows someone who could donate a raffle prize, something to auction like yoga sessions, beauty treatment, theatre tickets, Group paint balling session, other activities…) or offer a cash donation for the quiz winners, then please contact me: email@example.com.
Right, I’m tired so off to bed.