Emotions Update

Last summer, when the scan showed the treatment wasn’t working, I felt like I needed a break from it all. As well as any treatment, I also decided to stop with the sleeping pill (temazepam) and antidepressant (sertraline) that I had been taking since I was diagnosed. I no longer needed the sleeping pill and wasn’t sure that I had ever needed the anti-depressant. The internet warned me this would be hard. Many websites said coming off temazepam was seen as harder than coming off heroin and that it often requires rehab, or at the very least having close supervision by a doctor. Always one to overestimate myself and not one to back away from a challenge, I figured it couldn’t possibly be that hard and started tapering off both, very slowly, without medical help from early September until late December.

It will be impossible to articulate the last four months of emotions and put them in to one blog post so consider this a very long snippet. To say that it hit me like a truck doesn’t quite cut it. It was like being hit by a van, only to get up and hit by another, repeatedly but unpredictably, until an entire fleet was on the road and I was just roadkill.

I see a therapist around once a month who has said previously that based on what I say I appear to have grasped the gravity of the situation but that my emotions and actions didn't match this. He was delighted when in one session last month I started talking about a pretty depressing hospital appointment I had been to the previous day and, to his surprise, started crying. He said he felt relieved that it had finally come. In reality he had nothing to worry about - I had also cried earlier that week watching the football. I had cried walking down Southbank on a sunny December day. I’ve cried when reading a book about the history of Asia, or on the morning of the election result, and listening to Lana Del Rey. Sitting on the tube watching strangers. In my lounge at 11am. Lying in bed at 4am. I cried watching Finding Dory on Christmas Day. I think at one point staring at a plant almost set me off.

It isn't just the tears that have shown the shift in my emotions. I've been less sociable with people generally and my temper has been shorter than usual (unfortunately, my family has taken the brunt of this). Then, on a flight last month, I was listening to music and had the sudden urge to write a poem so spent the next 3 hours putting my thoughts into pretty bleak lyrical form. 15 year old emo-me would have been so proud.

But the constant welling up has been the biggest shift, and I have cried far more times in the last few months than in the last 20 years, including the 15 months preceding it. Those that know me well might say that this would not have been difficult due to my robotic disposition. I am not one to try to hide my emotions, they have just never seemed to come out, so this was new to meI really didn’t like it, to be honest, because of the lack of control I had over it.

I pushed through because I figured this was a time I should be crying - my therapist had won. I guess, thought,  I have had plenty to be sad about. A day which would have once been the worst of my year, like when I receive bad news from a doctor, now seems to be happening every few weeks, sometimes days, to the point where I was becoming almost null to it.

It was hard knowing whether this period of being overly emotional for me was purely withdrawal symptoms or just a glimpse at what things would have been like without the crutch of the sertraline at the beginning. It was probably a bit of both. Having cancer comes with a huge emotional package. My therapist said that my situation is like living with grief and constantly adjusting to it, which I found to be an apt description. A continuous and never-ending series of losses to your old way of life as you adjust to not being able to live as you once could. What is hard is not knowing what stage of grief I am in – it changes a lot and it’s often more than one simultaneously. It is the roller-coaster that you didn't want to get on and you can never get off. Ever.

Although I don’t tend to dwell on negatives, there are many things that have got me down recently. The loss of my old life still hits me hard, and it is depressing when I think about how good life was two years ago and how much things have changed. I feel the biggest difference, that I’m not yet used to, is the loss of independence. As amazing as it having family members, particularly my sister, looking out for me or taking care of me when I’m unwell, the ability to just go about my own life without informing others has gone. Living with family in my 30’s was never part of the plan. I feel like a fragile young teenager; needing to give my whereabouts so people know I'm safe and out of trouble, with various people texting each other without my knowledge to ease their concerns. I hate this. I hate that I feel obliged to ease others worries when I would rather just get on with things. But it is just as hard admitting that maybe it is the smart thing to do. I am more at risk of something happening to me than the average 31 year old, so it is sensible to give my holiday details to someone before I go, or let my sister know that I'll be back late on a night out. I understand this is because people care, but I miss being able to disappear off the grid for a few days and just do my own thing without feeling obliged to tell someone where, what or why.

On top on that, I’m now a slave to pills and I’m not able to anything without going through a mental checklist first. Have I taken all my pills today? Do I need to take some with me when I'm out? Can I have a beer or will it impact the chemo chemo? Does my low WBC count mean I should avoid the tube, or even cancel my plans all together? Should I be going to the gym to keep healthy or is it actually making things worse? Is meeting a mate going to make me ill? A dozen questions I don’t want to be thinking about. Gone are the carefree days when leaving the house was a matter of 'phone, keys, wallet'.

Often, I have felt completely disconnected from the world. I feel only part human because of what I no longer feel I can look forward to – as if life is happening around me, and that I’m not a part of it. My planning horizon goes ahead about a month, three at a push. I feel compelled to make the most out of every moment, as if my life has become a bucket list which I haven’t even written, where I have to fit everything in, but all this has led to is the feeling of never doing enough. Of not having enough time to do what I want to do. And then feeling like I need to pretty much work out a schedule in order to fit everything in. And then doing nothing, crippled by indecisiveness or feeling shit about everything. I often feel like I can’t win.

I don't want to be defined by cancer, and generally people do a remarkably great job of managing to stay on the right side of the very thin line by treating me as they normally would whilst also showing an awareness of situation. It’s only when I stop to think about it that I realise how hard it must be knowing how to act and what questions to ask, and it’s to the great credit of the people around me that they do as well as they can. But for all the talk of normal stuff, eventually someone (admittedly, often me!) will bring up cancer. Whilst other people can talk about their careers or relationships or how they feel about X event happening to them, when the conversation turns to me the reality is that living with cancer is by far the biggest thing going on in my life and if it isn’t at least acknowledged then it’s just ignoring the elephant in the room. The problem is my mood is the driver of whether I want to talk about things, and that is unpredictable even to me, let alone someone who hasn't seen me for a while.

So, a quick note to people on how to act- if I want to talk about things, I normally will, and I don't tend to want to have long drawn out discussions on how I am otherwise. Hopefully this blog will give enough detail so general questions are avoided. This does lay the burden on me of having to bring it up if I want to talk about things, which does leave me feeling self-centred when I do want to talk about it, but I don’t think there is anything close to a perfect answer to this situation, so I’ll take that. What I need most is to have positive people around me and to be laughing as much as I normally would, even during the bad times. I’m learning that there is a time and a place to be negative, and when it is unnecessary, I’m trying to cut down on it as much as possible. Live is short.

I am past the worst of the withdrawal, and no longer cry at cartoons. Loss of independence and freedom is a truth, but life is by no means awful. I have to live with the uncertainty and any limitations to live the life I want. Currently I’m lucky that the physical impact is relatively minor compared to what a lot go through, so I’m trying to make the most of it. I've been reading a lot recently about life, happiness, purpose, dying. All the fun topics. A book that struck me particularly hard was Atul Gawande's excellent and moving 'Being Mortal', which I got through without a single tear (I just welled up a bit). It focuses on the medical profession’s failings in end of life care, particularly for the elderly; focusing on medical rather than emotional needs. Even though I’m not in any of the kind of situations described in the book, it has given me a lot to think about regarding how to live. Rather than focusing on feelings of sorrow for what’s lost, feeling pleasure for what you still have. Enjoying the moments when I have energy for what they are, and then enjoying the moments where all I can do is sit down to take in life, fully.

I was lucky enough to be away recently and get some winter sun. Feeling the waves rise up my legs and the sun warm me from the inside, a thousand miles from home, I felt so content. I know moments like that  will not last forever and times will be hard but that in many other situations - ones not as horribly cliché as the above - the feeling will return. To quote one of my favourite bands, 'happiness is just a moment'. But those moments make everything worth it.

This is not me smugly stating that I have reached some kind of nirvana as I am still facing daily challenges that I’ve yet to overcome, that I’m sure many others with an incurable conditions are very familiar with. I am scared of the future and my body giving up on me. Every time I feel something as simple as an ache in my side or a cough that lasts longer than a few hour I fear the worst. I am saddened when I think of the life I had, the life I am missing and the things I will not experience in the future. I still have days where I lie in bed late, feeling flat and lacking motivation whilst simultaneously chastising myself for wasting hours and being pathetic. But I am learning. Contemplating the brevity of life gives some perspective of how important every minute is, but saying that, I'm coming to understand that not everything I do needs to be something unforgettable. Sometimes you want to be travelling the world, and sometimes you just want to be watching Love Island.

I have had a lot of downs in the last few months. Either from external events like scan results, false hope at hospital appointments, feeling awful from chemotherapy or scared about pains in my body that would never have caused me to pause for thought before, or from inside my mind when my thoughts go down the rabbit hole and make me pensive and melancholy for a few days. But I've had plenty of ups as well, far more than I can list or remember. Living with cancer is hard, but so are a lot of things, and there is no point in making it harder. I'm still on the rollercoaster and I realise that maybe at another moment - perhaps in early December, last week, or maybe even later today - that I would have ended the post with a pretty depressing sign-off. But generally, at the moment, life is good, so I'm going to make the most of it.

PS: To fend off the questions - I'm on my third cycle of this chemo. It is going well in terms of side effects. I have a scan in two weeks to see if its working and decide on next steps. Mitotane is still high so a trial (e.g. Germany) is unlikely to happen any time soon. Done.