This week I have been exhausted and struggling to stay awake for any length of time, so tired even my brew needed a nap after trying to keep me awake. Trying to get things done has been fucking impossible! I managed to fall asleep whilst doing things, even while writing this ranty blog!
I finally got a call back from the Lymphoma Nurse Specialist. It was like winning the lottery, except instead of cashing in, I got the chance to ask some burning questions that had been haunting me. But hold your horses, she basically told me I needed to save those queries for my next appointment with the Consultant. Talk about keeping the suspense alive, that’s not till blooming April folks! – it's like they're trying to make my medical journey a season finale!
One question did manage to escape the question quarantine, though – 'why haven't I been told the grade and stage of my Lymphoma or its whereabouts?' The answer was a masterpiece of ambiguity: "We don't grade or stage the low-grade Lymphomas." I'm now more confused than a chameleon in a bag of Skittles; NICE guidelines talk about three grades of low-grade Lymphoma, but maybe my Lymphoma didn't get the memo, because we don't do that here?!?!?
So, still feeling clueless about my own health I had a chat with the nurse about how upsetting it was to receive information published a person with severe learning disabilities; bless her, she was unaware they even had them! When looking at the latest CQC report for the trust they were actually given praise for having invested in reading material for people with learning disabilities, I don’t think CQC were expecting them to send them out to nurses with almost 30years experience?
Asking questions of the Lymphoma team is like trying to understand why cats insist on knocking things off tables - a mystery for the ages. It feels like they are hiding my information from me, I didn’t even receive a clinic letter, but the GP did, so one has been written!
So, what have I done with my time when I have been awake enough to actually function as a human?
I've mastered the art of taking pictures of every meal, turning my kitchen into a food photoshoot studio. Because nothing says "I'm ready for my next appointment" like a gallery of well-lit nutritious meals. Take that, consultant! I’m the Picasso of plate presentations, do you still think I need to pay a nutritionist? I’m even considering starting my live cooking shows again; not sure that's for me and my confidence or just to piss on his idea?
Because life isn't complete without a touch of irony, I've also explored gym and swimming memberships. Hold your horses, though; I'm not quite ready for the gym. Between arthritis and back pain that kicks in faster than a cat in season jumps out of an open window, even loading the dishwasher feels like a workout. But fear not, I've found a gym and pool combo with a sauna and jacuzzi. Now, if only they'd respond to my application. Swimming is my chosen path on this ‘get Sara fit, thin and healthy’ mission – at least until my dishwasher-loading stamina improves.
In other news…
I have had new front and back doors fitted, I'm telling you this because it made me happy nothing to do with lymphoma lol. It's the little victories, right? Even the door salesman was laughing at how excited I was to have new doors! New window quote coming soon… Let’s hope they are super cheap, feeling skint after paying for doors!
To top the week off with futuristic hope, I've found a clinical trial I want to be a part of. Call me batshit crazy, but being a guinea pig for science sounds like the perfect gig for me. Who wouldn't want to contribute to future generations' knowledge about treatments that help, cure, or just make things worse? It's like leaving a legacy, but instead of a will, I’ll make a list of potential side effects. I will need a referral and then acceptance to become a part of this though! The treatment sounds amazing, so futuristic and clever yet simple?
I know I don’t need treatment just yet, but it'd be fantastic to know the secrets of feeling well enough to tackle a normal day. Work, activities, maybe even a marathon of my favourite TV show – the possibilities are endless… Fatigue, I will fucking beat you, I am Sara Lomas!
