I haven’t been blogging much recently, as you may have noticed. Partly, this is because I’m still in the aforementioned limbo and there’s not much ‘new’ to say. Partly, it’s because life is really not not very fun at the moment and as I want to keep this blog mainly upbeat I’ve hesitated to write.
These days, I feel physically pretty rubbish. It’s getting to the stage where in some ways I’ll actually feel a positive effect from starting treatment – although I’ll also have the side effects to deal with. I have very little energy, and quite a lot of pain. It’s all very much in the ‘boiling frog’ syndrome of gradual change, meaning that because it creeps up day by day I tend to underestimate it – after all, for me since May 2012 living with low energy and pain is ‘business as usual’. For most of that time I’ve been able to get on with life rather than think about it (or bang on about it) too much. Until recently, I could see that in spite of frequent dips the overall trend was upwards, and take heart from being able to do more and more. Now, what I’m able to do is less and less. I’m experiencing the same journey in reverse, and it’s a lot less fun.
Feeling like this, it’s hard to know how to live my days. Overall, I have a shrinking energy ‘budget’: so although I can (at a push) do pretty much anything if I want/need to and have set my mind to it, that comes at a cost of feeling utterly wiped out. As I’m not in official ‘invalid mode’, however, people are naturally not yet aware of the state I’m in. The upshot is that I spend a lot of my time struggling to fend for myself, feeling rubbish.
Still, I know you all want to be supportive so I guess the first step is to let you know that support would be welcome! When I was first ill I know that I was uncharacteristically dictatorial (no telling me how sorry you are, no anecdotes about other people, no platitudes, no texts just emails when I was in hospital with endless other things going ‘ping’ constantly…). I don’t have such clear insight currently myself but a few thoughts (as ever, this is all new to me too and I’m flying blind without a manual):
– Come to Battersea! Londoners, you all know that this is a big and tiring city at the best of times. Now imagine that 30-40% plus of your bone marrow is cancerous, and picture getting on the tube to get to the other side of it, or trying to do anything in the evening after a day at work. From my point of view, I really need company and friends right now, but I need them to come to me and am too embarrassed to say this. So consider it a permanent ‘open house’ invitation: Helga the Great, At Home. If you’re up for it, come and play ‘Ready, Steady, Cook’ in my kitchen. Maybe we can watch a DVD, maybe we can head out to the pub, who knows maybe I’ll even want to hop in a cab and go somewhere fun.
– Pick up the phone! It’s good to talk. If I can’t answer, or am too tired, that’s OK. Try again another time. Maybe I’ll call you back, as at least I’ll know you’re someone I can call
– I also love Whatsapp (or texts) as a nice low-key way to keep in touch when we can’t meet up or speak, especially with far-flung friends. But here’s my rule for that: please tell me something or suggest something or offer something rather than text me a question. I know ‘How are you?’ is a polite way to start a conversation when you’re face to face, but right now it’s not a simple question for me to answer, and ‘How r u?’ feels very draining/ extractive when it’s not supplemented by some kind of news or effort and is from someone I haven’t spoken to recently. If you want to drop a line but only have 2 minutes to spare, just send me some news from your life and then add ‘I’m thinking of you’ or ‘I hope you’re well’. If you’re in London, tell me when you’d like to drop by. Over time I can then send you back my news, or at least write it on here. Newsy emails are even better, postcards absolutely rock (you know who you are, my Dutch Viking friend!!)
– Often, let’s talk about any old rubbish and I’m sure you’ll get a sense of how I am. Don’t expect updates on my health unless I feel like it. I do write a blog which you can ‘follow’, but I’m a bit sensitive to feeling like the football scores or a 24h news channel where you can ‘get the latest’ by sending me a quick text. If we haven’t spoken for a while, probably don’t make it the first topic of conversation. Equally, please don’t think it’s a taboo subject: I do really need to talk about it, to get it all out of my head, so once it’s raised be ready for a potentially long and serious conversation, with tissues and hugs.
– Offer to come with me to hospital appointments. Always a bit of a drag. During working hours so I’m unlikely to ask people (as I know you would need to take leave and/or will find it tricky with kids) unless it’s a real biggie, but actually I guess if I spread it around a bunch of different people then you won’t mind taking the odd day of leave. Let me know if you’re willing and I’ll start a list.
OK, I’ll stop there: I think some of this sounds a bit passive aggressive or angrier than I am…. note this is probably less due to anything recent or anything specific but more a cumulation of a year and a half living in Cancer Land….. the issue of what to say/ what not to say always seems to hit a few raw nerves. Please don’t take offence!
The short version is that the next few weeks is inevitably going to be tough, but it’d be a bit less tough with some fun people to hang out with.
Meanwhile, today I am indeed heading out across town – I definitely make an exception for my brother, nieces and most importantly heavily-pregnant sister-in-law (niece number three due in a fortnight!) who are also generously offering me roast lamb and a sleepover – nice. So, any responses to the above probably best received for today in email form or voicemail form – don’t be surprised if I don’t pick up the phone, I’ll probably be playing My Little Pony.
Yours gratefully (for all your support)
Helga the Greatful