INITIATION INTO NEW CHEMO

So I started my new chemo last week, at the beginning of September. As I said, one drug is given intravenously once every 3 weeks, the other I take in tablet form twice a day for 2 weeks out of every 3. 

I've always had mixed feelings about having company at the hospital while I'm having chemo - it's great having a distraction from both the nerves and the inevitable waiting around, yet I also prefer to rest, or zone out listening to music, while the infusion is going in, and to do positive visualisations of the treatment being effective. Because I find it hard not to slip into social conversation mode when I'm with other people, I've been concerned that having someone there with me would mean not being able to do what I truly want. But this time I was lucky to find the perfect compromise: my lovely cousin Amanda met me beforehand for a morale-boosting cup of tea, came with me to the hospital and stayed with me till I was all hooked up, then left me to my internal rituals - it made the experience much more pleasant, yet still allowed me to handle the process how I wanted to. 

The infusion itself was fine (I think they usually are, unless you have an allergic reaction to the drugs) and although I felt tired afterwards I felt pretty much OK. Until the steroids wore off the following day - and then, my God, I was completely wiped out. I remember I was a bit tired after chemo last time round, but this was on a scale I've never experienced before: this was bone-crushing exhaustion. It felt like flu (without the flu symptoms), where I could barely drag myself from my bed to the sofa, and even when I was lying down I felt an overwhelming weariness. I was mentally very "foggy", and could only just summon up the energy to eat, deal with the odd pressing email or phone call, and stare glazedly at the TV for a bit before collapsing back into sleep. Luckily I'd been super-organised and stocked up on a week's worth of food, and had left my diary pretty empty, so I spent 3 days almost entirely horizontal, sleeping or barely awake for 15 or 16 hours a day. Even lying propped up on cushions on the sofa was too tiring and I had to be totally flat. 

Perfect illustration of me last week

One bit of good news was that I didn't feel unwell - not a trace of nausea which was a huge relief - so the 8-a-day anti-sickness tablets were clearly doing their job. On the Friday I managed to make it to an acupuncture appointment (with my eyes closed for the whole journey there and back), and that helped to clear the fog to quite a large degree. By the weekend I started feeling more like myself again, able to stay up and about for most of the day, and to concentrate well enough to read or listen to music or talk on the phone. I still don't have huge amounts of energy but I feel a million times better than last week.

The other side-effects, to the nerve pathways, have been rather weird (although exactly as I was warned). For the first few days, when I touched anything cold, sometimes even through gloves, I got a strong tingling in my fingers, as if I'd touched extremely cold metal. Even washing my hands in normal tap water was  too cold, so I had to use the hot tap. I've also had some pins and needles in my toes without any exposure to cold; both of these have been a bit unpleasant but not painful. More discomfiting was nerve pain in my jaw and salivary glands when I ate - not every time, and only lasting 5 seconds or so, but like an electric current in its intensity. I've had a few tingling or numb sensations in my lips and thumbs which aren't exactly painful but feel as though an electric current is contracting my muscles involuntarily - very odd and disconcerting, but fortunately again wearing off a few days after the treatment. To my relief I haven't had the (rarer but much more serious) experience of being unable to breathe or swallow - I've been assiduously avoiding eating or drinking anything chilled, which is what precipitates it, and am very glad not to have had to deal with that.

From all this, I think I need to be very careful to continue to take things easy, not overdo things, and get plenty of rest, even during the points in the cycle when I feel better. It's sobering to realise just how much my body's clearly having to deal with, and I can see that the first time round I didn't really make all that much concession to the chemo. It's true that I had a relatively easy time with the first drug combination, but with hindsight I think I was also terrified of being "ill" and determined not to let it stop me doing things. All very admirable no doubt, but it meant that, for example, I wouldn't let myself have a rest in the daytime, scared it would be a slippery slope from that to becoming a permanent invalid, and as a result I frequently did too much and over-tired myself, which wasn't good. 

Over the past couple of weeks, preparing myself for this new phase of treatment, I've realised that I'd confused being ill from cancer (as in, symptoms related to the position or size or pressure of the tumours) and being ill from chemo (the side-effects of the drugs, which can be horrible, but which stop when the treatment finishes). Because I was terrified of the first, I couldn't allow myself to acknowledge the second. I'm not talking about a healthy still-doing-things-you-enjoy mentality, but denial: I could not allow the possibility of being ill and it felt imperative that I must not let it happen to me, otherwise it would mean it was all over. (It's partly why I found being admitted to hospital last summer so devastating - the illusion that I could stop this happening to me completely fell apart, along with the realisation that I couldn't actually keep myself invulnerable by willpower.) Making that distinction has really helped me to understand that although I felt worse last week than I did before starting treatment, that doesn't in itself mean the cancer's getting worse - on the contrary, I hope the chemo's blasting the tumours at least as hard as it's blasting the rest of me! 

So now that I'm not so scared of what it might mean if I'm feeling under the weather, and not so desperate to convince myself and everyone else that it isn't actually happening and I'm fine really and there's no reason not to keep up my former levels of activity, it feels much easier to accept the side-effects with some equanimity. It was horrible to have such crushing fatigue, but at least I wasn't fighting against it saying "no, no this mustn't happen!", and it no longer feels unthinkable to slow down and rest. I suppose it now feels possible to be kind to myself instead of having to drive myself onwards the whole time. All the same, it's been a big shock to experience such overwhelming debilitation, and to face needing to pare down my life for a while. One week on, I feel like I'm re-emerging into the world, but rather cautiously!

A YEAR OF BLOGGING

Thank you so much to everyone who's emailed, texted, posted here and rung with messages of support and to wish me well for the next round of chemo. I'm very touched and it makes a huge difference to know people care about me.

It seems a good time to reflect that it's now a year since I started writing this blog (with the help of my friend Linda who I'd just met at the clinic, who showed me how to set it up - I wouldn't have had a clue otherwise!). I post-dated the first few entries so that they gave a chronological background, but it was at the end of August 2011 that I "went live".     

At first I wasn't sure how frequently to write or how much detail to go into, and it must have been frustrating for people not knowing how often to check it.

Since then I've written 35 posts including this one, there are 25 subscribers, and as of today there have been 7295 viewings, from countries including not only the UK, Australia, New Zealand, USA, Canada and northern Europe, but also Mauritius, Russia, Israel, Greece, Latvia and Bulgaria. The variety of countries intrigued me, and at first I assumed that people who knew me were abroad when they read the blog, but I've since discovered that the blog comes up in searches for the Herzog Clinic, so has been read by people who are researching treatments and clinics. 

I've found writing it a very interesting process. Overall it's certainly fulfilled my initial aim of letting people know how things are going without having to repeat it in emails, texts, phone calls and in person, but it hasn't been quite as simple as that. At first it seemed to create more conversation, as people often contacted me individually after reading each new entry, and although these were always messages of support or interest I generally felt I needed to reply, so I ended up doing nearly as much emailing anyway! However it helped enormously that I wasn't having to explain things over and over again (which is very draining), and it meant that individual strands of communication could be more two-way, rather than me and my issues taking up all the time.

At the beginning I found that many of the people closest to me in everyday life didn't read it much - I think this was a mixture of assuming I'd tell them what was going on in person anyway, and perhaps also finding it a bit confronting and at odds with my "being normal". At times I felt annoyed about having to repeat things in person which I'd already written about in detail, but then I began to realise that  I was sometimes using the blog to say the stuff I find hard to say in person - the things which I avoided saying so that it didn't put a dampener on a social situation, or which I was scared would upset or worry them, or which I was afraid would disprove their view of me as sorted. At one stage it felt a bit like a double life - expressing my feelings here online, but in person acting (and tacitly inviting others to treat me) as though nothing had really changed. That clearly isn't the way to have good relationships, or to allow people to support me as they want to (and as I need), so my aim is to practise getting more comfortable saying things face-to-face as well, not just from the relative "safety" of the blog. 

I found that as I began using the blog to process some of my feelings, as well as describing factual information, it felt quite exposing. I worried that it was horribly narcissistic to talk about myself in such a public forum, and imagined people judging me or wondering why on earth I thought anyone was interested in the minutiae of my inner life: my life and thoughts aren't automatically interesting just because I have cancer!

The other thing I struggled with for a while was that not many people write comments on the blog. Being a user of Facebook, where a status update often gets half a dozen or more responses within a few hours, I think I'd assumed that readers (or followers, as I believe the correct terminology is!) would use the blog to say what they thought of my posts or to express their support, and at one stage I felt quite upset that this doesn't happen much on the blog itself. Instead most people who respond do so privately, by email or text or phone, or they tell me in person - not surprisingly, as these are personal responses and influenced by each person's unique relationship with me. And I do very much appreciate them. But I'm ashamed to say that for a while I did feel hurt and irritated that there wasn't much public comment - the result of feeling humiliated that my blog didn't look appreciated, even if it was. I imagined people reading it and pitying me, thinking, "poor sod, there she is pouring her heart out and no-one's even interested". 

However, once I explored and understood those feelings I stopped thinking of it as a popularity contest, and since then I've become much more able to appreciate what people are actually saying (which has been universally positive and encouraging), rather than getting hung up on whether they say it publicly or not. Also, I've realised that I tend to write quite "self-sufficient" entries, and most posts don't really invite easy responses, so I can understand why people don't try and fit their thoughts into a comment box! Interestingly, since I've accepted that, it's made it much easier to put my more personal thoughts and reflections here: if you're writing in order to gain a particular kind of response, you're constrained by what you imagine your audience's reaction will be, whereas if you're not expecting replies it allows it to become a much freer exploratory space. Over the last few months I've found it very liberating and really enjoyed that, so please don't take this as a demand for comments! - it's more to feed back about the different stages I've been through in using this medium, and how I've discovered more about my expectations and anxieties, which has been very enlightening.

It's taken me a while to find a tone which feels right, especially as the blog has evolved (and the readership), and I'm aware that I've used the blog for different purposes at different times. A lot of the time (and especially at the beginning) I've wanted to reassure people that I'm OK; less overtly often trying to impress, entertain and inspire by giving the impression that I'm coping brilliantly, or that it's actually not that bad. At other times I've wanted to convey how hard it is (deep down wanting people to feel sorry for me, worry about me, or see me as a kind of tragic noble heroine). More recently the dominant tone is wanting to tell people that I'm not as OK as I make out - not to gain pity but to be understood and heard in spite of me generally acting as if I'm fine - and to shake off unrealistic perceptions of me as "brave" or "strong" simply because I'm living with cancer. (I know those are meant as compliments, but it can feel hard to live up to, and can make it more difficult to admit when I'm struggling.) There are probably usually at least a couple of those dynamics in each post - most often where I write something quite personal, or potentially confronting, and then lighten it with a photo or cartoon to make it easier (both for those reading, and also for me, by getting back into my more comfortable "upbeat" persona). Being able to choose the "spin" I put on it gives me a sense of control, which helps immeasurably (not least because it helps me convince myself that that's how things really are), but of course any one version only tells part of the story. Given that it's been such an experimental journey, and a bit of a mishmash of "genres", I'm very grateful that you're still reading! 

A secondary purpose of the blog is to inform people not just about my own treatment journey but about what's out there, in the hope that it's useful for other people dealing with cancer. On my last visit to Germany I met a couple of patients and carers who had found and read this blog before arriving; it was slightly odd meeting strangers who knew quite a bit about me, and I wondered (a touch neurotically) how differently I come across here compared to in person - I suppose it was a taste of what celebrities must feel!

However, I was really pleased to hear that they'd found the blog helpful in finding out more about the clinic and making the decision to go there themselves - I would have found it so useful to have known more about the place from a patient's perspective before I arrived, so it's great being able to pass on some of that to others.

So in summary, what started off as simply a logistical solution to save me time and emotional energy has become something which I've found incredibly useful in articulating what's happening to me and making sense of the turn my life has taken. It's given me some much-needed distance on things: when I'm thinking about how I'm going to describe something in my next post I have a degree of perspective - becoming a temporary observer to myself - rather than being simply engulfed in it, and I think that's been essential in not getting overwhelmed. I've also really enjoyed taking photos to illustrate it, and doing something creative; now that I'm not working I don't have as much opportunity for self-expression, so I really value it. Finally, I guess it's a kind of testimony to where I am in my life, and having people read it feels incredibly validating. Thank you so much for coming along with me in this journey, in whatever way you do.