Today is a good day

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The title of this entry is stolen from the famous Macmillan poster advertisements I've seen across London, well before cancer was any part of my life. Some say “today was a good day”; some say “today was not a good day”. And I've now got the personal experience to say that the agency hired to come up wth this line was really listening to Macmillan, because that really boils it right down. I'm now into my second cycle, meaning I have had three injections of ABVD for Hodgkin's Lymphoma stage 3. And the side effects of this internal battle come randomly, by the day, and go again to be replaced by another one. Some days I wake up feeling refreshed and less tired than usual, with no pain, and that has the potential to be a good day. Other days I wake up (or as per last night, go to sleep) totally shattered, aching, with my lymph glands screaming at me from inside as they break up into bits and work their way through my smashed up veins. That is the beginning of a rather crapper day. That said, my day and its outcome entirely isn't predicated on my health. I had some freelance on recently, and we are looking for a flat, a job in itself; plus I have been seeing friends and had a very close one stay over last week. But it is increasingly clear that, for the first time in my adult life, the health must – MUST – no, seriously - *MUST* -always come first. Even so, whether you have a good or a bad day seems largely up to fate, and the precious illusion that I have some control or input is really diminished.

You don't even think about it when working a job, commuting, paying bills, going out, living as usual, when you're on form. In fact, I'm totally guilty of abusing my good health on a daily basis for the last 11 years: I actually have never been much of a drinker, never smoked, not really interested in drugs – I don't mean those perennially popular toxins – I just mean that I have, with no regard for the consequences at all, muched my way through a million McChicken Sandiwiches, glugged through a million Red Stripes and Irn Brus, ordered a thousand and one Dominos, regularly eaten way out of date foods, done absolutely fuck all exercise, sat on my arse in front of Twitter for too many pointless hours and worked too many 12-hour days to build my career. Christ, when I think of all those Crème Egg McFlurries I snaffled down on the number 12 bus after a night on the booze with my work friends. This makes me sound as if I'm blaming my poor lifestyle, but I'm definitely not – c'mon, I would do it again! I wasn't even that bad compared to most people I know! But my lifestyle since diagnosis and treatment starting has changed entirely, so that not only do I lack the energy or the mental strength to go into town and hang out, then queue in MacDonald's and get the bus home, I also really can't because I must put my health above all else, as it's all I can do to give my body its best chance at recovering. Since my last chemo last Friday, I am neutrapenic, which means I have no immunity and have to be extra careful to avoid picking up infections which my body s now wide open to and cannot fight. That means absolutely minimal involvement with public transport, crowds, risky foods, or kids. It is limiting.

I am not really missing most of that stuff though. I haven't been far out of Camberwell since I started treatment, as I just don't have the energy and to be honest the thought of traipsing through crowds and elbowing past tourists makes me feel exhausted and even slightly frightened. I keep to our local shops but mostly I am in the house. Alexis comes home every lunchtime to see me and he usually goes where I go; I feel much better, much safer with him there as I feel weakened and not that sure of being away from home on my own these days. It's a pivotal change for someone who has for so long been doggedly independent. And the food thing: I don't mind massively, because the chemo is playing with my sense of taste and making a lot of foods I liked (note: that's all foods except gammon steaks and blue cheese) taste like a mixture of silver and saline, which I get quite a strong smell of at the same time. I can't really explain how that tastes save to say that it's disgusting and totally offputting. So I'm eating less and less, but my tummy still grumbles on cue. My body is hungry, but my brain isn't. I have to override it but with good things. Alexis had a cheeky Morley's (cheap chicken and ribs joint) the other night which usually would be heaven on earth for a steal, but I took one look at it and just couldn't.

If there are external factors that can determine a good or bad day while my chemo goes on, it's probably a good sign – in a fucked up way – that work, landlords and the powers that be can still wind me up and take up most of my day. It must mean I'm doing ok enough to still engage in some way with the stuff of life. I had taken on a small freelance project from home, for a PR company who heard of me through a recommendation. It was my first go at PR work but I thought I'd see how it went. Naturally they promised a decent rate for not much work and I was up front with them about my treatment, so we worked up a schedule around chemo. Alas, nothing is as simple as it seems. I found it much harder to deliver than usual; they kept changing the deadlines and goalposts, and in the end I backed out after completing the first of three parts of the project. I couldn't continue; it seemed that every time they decided they wanted something from me, I had to spend much of that day in the chemo ward with different side effects, and chemo involves more waiting around than anything else. Waiting to be assessed, waiting for blood results, waiting for drugs to arrive...whatever, it is never just one hour out of your day. My sister was staying a couple if weeks ago and on that week I developed a blood clot in my arm, from the cannula, which became intensely painful and my arm almost lost all its power. Between getting it seen, getting an ultrasound on it, getting a diagnosis., getting someone to decide what to do about it - that took about two days, most spent in the chemo ward, waiting. And I was in real pain; I couldn't think about much else.

The Macmillan nurses do all they can but there is usually a single oncologist or haematologist on duty across a clinic and the chemo ward, so there are naturally long waits while he gets bleeped and finishes his rounds to get to you. It is usually 3-4 hours. And as I am responding to randomly-occuring side effects which I'm new to, these visits are unscheduled and unpredictable, so that just doesn't chime with deadlines. Deadlines are in fact as demanding as cancer: they always come first. It's always a good day if you're my deadline! And believe me, I enjoyed being bossed around by deadlines. I love deadlines. It didn't feel good to back out, as I'm proud of being a very reliable and effective person. But you have to be pragmatic when two demands are competing and the wrong one is losing out. Plus, I learned something: I really don't want to work for PR agencies. And I already knew that, but now I have at least tried it.

In the interim I had pitched a few story idea s to editors I know from my old company, just to float ideas and see if anyone took. In both cases there was interest in the stories but not my rate – and since I wrote them that I was flexible and to tell me what they would pay, I have not heard back. At any rate, since then I have been in worse health and have to be yet more pragmatic about not slipping off the wagon: the wagon being lots of lovely journalism work and the pressure of deadlines. I may not smoke, drink much or do drugs, but I can't deny that my work has been my addiction and it has certainly contributed in some way to my current state of health. And it is ever beckoning: the sweet smell of a byline, an angle followed through, a snappy end quote. But I admit right now it's too much. My fear is that absence will make the heart grow forgetful of me. I know markets move fast and with so much financial pressure on editors, freelancers are taking on more work for pitiful rates. By the time I'm back in the game, will I be remembered, will my portfolio be relevant, will I be able to compete, will my rates be anywhere near reality? Will journalism be a place for me to thrive again anyway? I left it when it was in terminal decline as a business model, and utterly shamed by the phonehacking scandal, which has yet to be ripped open and dealt with. The meedja is a drug. Perhaps cancer will lay the path for my rehabilitation.

And then there is the special, unique loveliness of looking for a place to live. Alexis and I finished our letting contract in June but our landlord has sold the house, so we have agreed to a month by month let up until the end of September, in theory giving us time to find a nice new place. But we have been dicked about royally by agents and landlords and even when well, they are intensely exhausting to deal with and generally lie through their teeth. After a few weeks of looking at rather blah places which were overpriced - I'll spare you the run of the mill details including the agent who didnt even know where the property he was showing us was and spent nearly one hour looking for a place to park before getting to us - we found a really nice 2 bed near where we live now. It was freshly renovated, clean, pretty and well located. We beat the price down to what we could afford and agreed on it with the agent and landlord. Then a week later when our credit checks were done and ok I phoned to see when we could sign the contract in order to gie our one month's notice in our current place. And I got a mouthful of abuse back from the agent; some bullshit about signing on the day you move in or not at all, meaning if something went wrong with the paperwork, we either move in and accept a crap contract, or we are on the street. A long story short, we told them to piss off and got our deposit back. But we lost a lovely flat and the stress off that abusive phonecall, then looking into this agent online them having raised my suspicions, discussing with Alexis what to do, going into the agent office to discuss with them again and losing the place was a lot to deal with in between chemo sessions. I felt so drained. These days when I feel stressed my lymph glands ache and pulse through me, and my body feels like lead. And we thought we'd got a second place last night when we had an offer on a cute house in New Cross accepted; in less than 24 hours we went from being "the preferred tenants" who moved heaven and earth to move in two weeks before planned - thus having to apologise to our landlord here and agreeing to pay him a week's rent to get out early or lose the new place - to being jipped out of that place because I am unemployed. Thatas really the last straw. On accepting our offer I sent over details for our tenant and work references, and on my work one I noted that I'd left work in May and am not working due to medical problems. And an email came back saying that the landlady "had not appreciated before" that I was unemployed and that she doesn't accept unemployed tenants, so sorry and goodbye. Just like that. We had spent that day negotiating with our landlord here - who we really like and hate to mess about - to get out two weeks early, and to pay a week's forfeit rent. We had spent time talking with her. We thought we finally had a place to live. I replied to her explaining that I am being treated for cancer which is why I was not working, and that if she ran my reference checks she would find both me and Alexis to be perfect tenants and workers having always paid all our rent and bills and that we're generally fine upstanding citizens. But she didn't even bother: she just dropped us like a stone because I've got cancer. In 11 years as a private tenant in London I've seen it all from landlords and agencies - every single kind of malpractice, lie, trick, and incompetence. I've even enjoyed fighting them and getting some justice (one landlord I had to fight through council tribunal for two years to get my deposit back). But this really is the single lowest point. And in a way it's interesting for me as a journalist to experience this sort of discrimination and ignorance now, while so many millions of people in the UK suffer unemployment, council tenants being evicted because their teenagers suposedly rioted and looted, rail companies crucifying commuters with never ending fare increases that make it untenable to commute but impossible not to. I'm insufferably middle class and a meedja type - I've had suffering but most doors have been opened for me. This is the first time society has slammed a door in my face, and for something I just can't help. Now I am beginning to understand a little of how those not so privileged see things. And I must say, I can better understand why anger boils over into rioting.

Whatever, we'll go on looking and hoping we find a place we can afford. And I'll write again when I feel able.

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