This is probably only going to be of interest to me! I seem to be becoming more navel-gazing as the days go by but, even if this blog serves only as a record for me to look back on, that's ok!
I was diagnosed with leukemia about a year ago. I'm never sure in things which have public viewing, just how much detail to go into so I'll just add some basics for now and maybe add more detail as I go along. For the last year, things have trogged along fairly comfortably with my blood results etc being reasonably stable. A little up and down from time to time, but in the main, fairly ok.
In the last month or two, things have changed quite dramatically and now I'm at the point where high-dose chemotherapy is being suggested and I'm having to look at a whole new array of treatment options.
As a person, I'm fairly phlegmatic, nothing much phazes me and I tend to muddle through life without too much bother. I am a bit of a hybrid, half-American and half-British (so apologies now for my American spelling -before anyone corrects me!) and because of this, and various other things, it means I'm sometimes reasonably isolated over here. Most of my family live in the States as do the majority of my long-term friends. However, I've been over here long enough to know a few people over here too (before I make myself sound completely sad and lonely!) I'm self-employed which also brings its challenges when you have a chronic illness. I dutifully ordered the MacMillan employment packs and the information on self-employment and it's VERY useful and I'd definitely encourage others to get hold of those pieces of information.
I'm very lucky in some ways, my office is part of one of these new co-working spaces so I share the office with several other production companies (I run a film production company) and other media-related small businesses. This has worked out beautifully since my diagnosis as we all tend to help each other out anyway and, I've discovered, people are incredibly willing to help out when I'm ill. Without complaint they answer calls for me, take messages, print things out and fax them here, there and everywhere but I have now finally realized I need to employ some type of assistant as it's really not fair of me to simply rely on their goodwill all the time as my abilities seem to be getting less by the day.
To illustrate what I mean ... yesterday was Sunday. A day I'd set aside to do home-type things; washing, sort out the washing-up that had piled up during the week, a few personal emails etc. However, I got up around 9 , felt fine, did a bit of a wander around and had a bath. Then, just before midday, felt a bit tired so thought I'd have a little snooze to re-charge my batteries. Popped myself on the bed and woke up at 6.15 am this morning! Where did Sunday go? I have no idea! Just a very annoyed cat wandering up and down the bed miaowing loudly about why she'd not been fed!
And this demonstrates very ably my main problem at the moment. I am just SO tired I seem incapable of doing anything at all. If I go to work, by the time I'm there I just spend all day long on the sofa they have in the middle of the office sleeping! If I stay home and try to work from home, it's much the same only I actually do get into bed and not on the sofa! I've tried all kinds of things, eating better (I have a dietician who's been massively helpful), not drinking caffeine after a certain time, even not drinking caffeine at all, but nothing really seems to work. Being self-employed in an arena where there are a hundred other production companies to come along and take my place if I'm out of action, is a real disadvantage I've found, as it leaves me very little option but to try to work whenever I'm awake - very often in the middle of the night (which actually works ok sometimes as I work a lot with companies in the States!)
Of course, employing someone does mean I have to stay awake long enough to do the interviews!
Just wondered how others deal with this? Any tips?
And a final thought - I just got my MacMillan Organizer and I love it. But I find it quite difficult to use (possibly because I also feel my brain-power is diminishing daily!). Some weeks I find myself wanting to use ALL the inserts, every page is dutifully completed, other weeks I only fill in one or two sections, and this makes it quite difficult to file in an organized manner. So, I suppose I was just wondering if anyone else here used it and if they'd care to share with me their experiences of it and how they used it to its potential for them? I'm sure everyone's different but I'm curious to hear the experiences of others if they have any.
And, just before I go, hallo! I guess I should have said that at the beginning - oops, sorry! I hope to join in the community a bit, hopefully also on the forums and hope to get to know a few of you as I wander about going through this journey that we're all on.
Thanks so much for reading.
