Out of the fog

Having been through two chemotherapies now it appears that there is a cycle (not an easy one) of a fog descending and then lifting from my body. A couple of days ago the fog lifted and only then is it when I can contemplate writing a blog again. Only then is it, too, that I return to reading without blurred vision, return to singing without the noise of my own voice and harmonium hurting my ears and return to doing more normal day-to-day things like chatting on the phone, emailing and watching things on my computer (yes, it’s true, watching dvds and doco’s is now something that I spend my time doing, like normal people. It turns out it’s the best distraction from feeling all the nasties that are going on with my body and I think will play a very important role in getting me through this process).

So despite how I like to perceive myself as doing things in life with ease, chemotherapy ain’t easy. In fact, it’s hard. It’s probably the hardest thing I’ve ever had to do in my life. So… so be it. As is the title of my blog – I trust the process of Life – so I trust this process.

The hardest part so far is that the doctors and nurses haven’t got the first 24 hours’ anti-sickness right for me yet so that first 24 hours after chemotherapy really has been tough. I can see from others that I’ve chatted to, who are going through chemo, that it’s totally possible not to feel rubbish, but different people need different concoctions, and it’s just a case of trial and error for each individual. I’ve got my fingers and toes crossed for Plan C of anti-sickness for my next chemo on the 9^th July.

The other main hard part is having that feeling of not firing on all cylinders. It’s part of the foggy feeling. It’s like a week-long hangover without any of the fun part of getting drunk. Wow, how I took for granted clarity of mind before. I guess we do – we don’t truly appreciate things until they’re not there anymore, when we can see the contrast of what it’s like not having that something any more. That’s what I see as my main blessings in this process – I’m getting to experience first hand how completely incredible these things in life are. And I’ll have these experiences forever more. Clarity of mind is something that I will treasure forever more.

I’ve thought a lot recently about just being thankful for waking up in the morning and being ‘with it’ and ‘alive’. We used to learn about the prayer in Judaism that you say when you wake up in the morning for exactly that reason. But how many people actually get to feel that gratitude sincerely from a deep place when they say it.

The other thing that I find hard is how my body’s reacting to food. First thing to note is that I’m extremely lucky in that so far I haven’t lost my appetite at all. I’m eating enough and my weight has stayed fairly consistent so that’s really good news. But the way my body is reacting to food is different to say the least. I seem to need to eat about seven times a day – no exaggeration. I can’t eat the hugest amount when I do eat (probably about half of what I normally eat at any one time) but to make up for it I need to eat regularly…very regularly. If I’m able to see if from the outside it’s quite comical I guess, but when I can’t it’s just plain annoying. It only lasts for the first week after chemotherapy, when my body’s generally acting a bit weird and trying hard to balance itself out. I generally wake up between 4 and 5 in the morning with hunger pains so severe that I have to get out of bed and have breakfast number one. Kate and I have now started to organise like a midnight-feast-type scenario (like we used to do when we were kids) the night before and put it next to my bed so that I can eat and go back to sleep. Then I have second breakfast at a more normal hour and third breakfast or early lunch late morning. The day continues a bit like this. But you can imagine what it’s like for Kate, given that in these early days after chemo I can’t do a huge amount for myself. She’s like this incredible kitchen machine, churning out one dish after the next, both of us trying to keep up with my body’s crazy reactions.

It’s not like normal hunger – it actually causes big problems if we don’t respond to it. It’s like a small child throwing uncontrollable tantrums. The hunger hurts and it actually makes me feel sick. Before I realised this was actually what was going on I was taking a second kind of anti-sickness pill. So when I realised through this chemo cycle that all I needed to do was eat all the time I didn’t need to take that other anti-sickness as much. It’s nuts. It just didn’t occur to me that hunger could do that. Well, I guess it doesn’t in a normal scenario. But this scenario ain’t normal. The good thing I guess is that my body is telling me what it needs and I’m able to hear it and respond. The hard part is the roller-coaster of a ride that it’s taking me on.

So, there it is. The fog’s lifted from Round 2. I’m a third of the way through my chemo’s. I’m petrified of Round 3 but… I trust…and so the journey continues.   

Onto the next chemo

I can’t quite believe that round two is upon me already. In the first few days of chemo I really thought that the next six months was going to be slllloooooow. Then before I knew it I’m onto the second chemotherapy, out of the six. A couple of days ago I was feeling a bit like I was psyching myself up before a sports match – you know how they do – growling, thumping chests (well, in the New Zealand haka at least). Sometimes I feel a bit like this is just one big game and I’m out to win. (That won’t be a surprise to those of you that know my competitive nature…which, in a way, has tamed over the years, but not when I’m competing with myself. I like to win. Hehe. It doesn’t always serve me well but in this scenario I don’t think it’s such a bad trait.) 

But my hair falling out kind of interrupted that “go get ‘em” feeling. What a crazy experience. I knew it would be, and I’d done as much preparation for it as I think I could have done. One woman in New Zealand even told me it would fall out around Day 15, so I knew the rough timeframe. I’d shaved my head to get used to the bald look. Even though I don’t wear earrings for pierced ears anymore I bought big dangly clip-on earrings (oh, how mum would be proud!) because I knew they’re meant to look good with a bald head. (Again, the competitive side of me sees rockin’ the bald look as a bit of a game – “how-well-can-I-do-this” type thing.) I’d kitted myself out with a few new head scarves and hats, bought some suitable makeup for when the eyelashes and eyebrows dropped. The whole shebang.

I was on the phone a couple of nights ago and scratched my head and a clump of hair came out under my finger nail. I then went up to the bathroom and started tapping my head and there it was…all falling into the sink. So I got the shower head to it and started rinsing it off. As ever, Kate was by side, just ‘being’...calmly supporting.

One of the things that I’m learning, or trying very hard to learn through all of this, is my expression of emotion – not suppressing emotions that come up, but allowing them to come out. Then when they are ready, also allowing them to pass on through, not holding on too tightly to them. Not easy, especially as it’s not something I’m used to. It was something that I learnt (theoretically) at Anahata (the retreat I was at in New Zealand), as it’s part of the yogic teachings, but I never really got the hang of it experientially, until all this came along.

I can see it hurts me, not letting emotions out. It literally hurts, funnily enough, now that I take note of it, in quite a physical way. In the past I guess I’ve always wanted to be ‘strong’ and not show my ‘weaknesses’ but I’m starting to see emotions for what they really are. It’s just movement of energy up and out. Not letting it out actually doesn’t serve me at all. I reckon, in fact, it makes things worse.

So here I am, going into this situation of losing my hair, commentating internally “yep, I’ve got this one sussed. It’s fine. You’re all good”. Washing washing. Watching watching. If we go back to the analogy of the ‘inner team’ that was one character – the type that thinks it’s better to just plough on through and hold it together.

I looked in the mirror. Wow, I’ve even got a lump in my throat as I’m recounting it. Even though I know I am still me, regardless of my physicality, bizarrely there was a split moment at that point that was surprised that I’m still in there somewhere. Funny eh.

There were still patches of hair left but I decided to pat it dry, put a hat on and call it a night, and let the rest come out as and when it wants to. At that point another member of the ‘inner team’ (who’s pretty strong these days) piped up realising that actually that was a pretty big process for me, and that that’s ok. I reminded myself that it’s ok to cry and that I need to express this one. Kate asked me how I was. I cried. Quite a lot.

There was one aspect of the narrative around the emotion that was based on the physical… obviously. “I don’t want to be bald”; “ I don’t want to look ill”; “I want to look normal”. Plus, my scalp felt very raw and sore. But the larger part of the emotion was something intangible. It was almost like it wasn’t just my hair that had just washed down the plug hole. It was something much greater. I was on the phone to Zac, trying to describe it, not really doing the feeling justice but trying anyway. “It’s as if I’m shedding layers, one by one, and that that was a big one that was just washed away”.

That’s all I could say to describe it, and it still is. Although it was a big emotional release I realised at that point that that shedding process was, and still is, not necessarily such a bad thing. I needed to cry and I hadn’t done for a little while, so it was much needed. At the same time, that feeling of shedding layers doesn’t have to be something negative. Change is scary but actually I have a deep knowing in all of this that this process of change is a positive one. It just takes a huge amount of that letting go and trust. A lot of trust in the process.

However, I can’t deny these last couple of days have been exhausting. It’s used up my energy, that’s for sure. There I was in Week 3 of the chemo cycle, which is, and has been, the week where you’re ‘on the up’ so have energy to actually do things. The challenge in that week, as far as I see it, is enjoying the time of having energy and doing some nice things but balancing it with rest and recuperation for the next round. But it’s very tempting just to ‘do do do’, because I can.

I decided to leave Monday and Tuesday free for resting before round two and actually it turned out I needed it big time as all my energy seemed to have gone down the plug hole with my hair.

So I didn’t manage to maintain that pre-sports match chest-thumping, growling at the opponent feeling. Instead I’m feeling a little bit more fragile and vulnerable. But I know that’s ok too. This process was never going to be an easy one, but it definitely is one that’s filled with wonders beyond comprehension.

Easier to pass through when I have the most unbelievable amount of support that I could have ever have dreamed of. I’ve always known, and been very thankful for, the amount of love that I have in my life, but I’ve never seen it coming at me, holding me, spring-boarding me with such glowing strength.

I know that mum is with me in this journey, but particularly today, on the 12 year anniversary of her passing, I want to acknowledge her. These days the 17^th June is a day to do exactly that. In actual fact, however, she makes up a huge part of who I am and in that way she walks alongside me every day. But it is a day to acknowledge, give thanks to her and for having her in my life and give love… more love… to whoever, however is possible. Like she did.

Many of mum’s “crew” – her closest friends – have been in touch with love and support recently. That feels really special. 12 years on you’re all still there, loving, supporting, being that incredible friend. Thank you.

Life is Beautiful

Everything right now just feels so totally amazing. Why is it that we have to go through such pain in order to truly experience the beauty of life. I guess it’s that old thing of dualities. It’s like I have to go through all that with my body in order to really see – to actually experience – quite how incredible the body is.

Chemo was a bit of a whack on Day 1. I’ll set the scene from the beginning of the day. Kate’s glands were up so she couldn’t come with me so Hazel came…and what totally gorgeous company she was. We set off early and arrived in Brighton and went to a wee café for tea before we went to the ward. Surprisingly, nerves weren’t too bad and I had this feeling of acceptance that stuck with me through the process...just about. I’ll explain in a sec how that was nearly sabotaged. It was like, “here I am, this is what I’ve decided to do and this is what I need” kind of feeling – for those of you that know about my mind’s inclinations over the past 6 months it was significant for me to have that acceptance and ease going in to the process.

I’d been to a hypnotherapy appointment the day before – it’s not hypnotherapy as we know it from the TV where they get you doing an involuntary chicken dance or something. It’s more of going through a deep relaxation process.

This is something that I’ve been going through over recent weeks anyway, but I talked through with Jan, the hypnotherapist, who has been through breast cancer herself, the importance of getting your mind into that deeply relaxed state, as often as possible, but especially during treatment. Then the body can get on and do what it needs to help itself. Jan’s story is amazing. If you’re interested check out how she got through her treatment and managed to minimise side effects: http://www.hypnotherapyforliving.co.uk/

It makes sense really, when we’re stressed and contracted we get sore backs, RSI, you name it. When we’re relaxed, we’re expanded, things flow and cells can get on and do what they’re meant to without restriction. So that was my aim and that continues to be my aim day in day out. Maintaining that relaxed state was a challenge to say the least though as the chemotherapy injections got closer and closer and then as they began.

I went to a conference once in Auckland on clustering in business – how businesses within and across industries can work together to maximise profit and resources. It was a fascinating conference. The workshops and presentations covered clustering at an inter-national level right through to clustering within ones own mind. Klaus Haasis presented my favourite workshop that I’ll never forget. It was on the “inner team”. We’ve all got one. It’s that team of characters inside our head that all play different roles at different points in our days, interactions, decision-making processes etc. We might have one that’s bold perhaps, one that’s shy, one that’s money conscious and one that loves to spend, one that’s angry, one that likes to giggle. You get the gist. Some of the characters are dominant and others remain in the background and only pipe up every now and then. It’s the dynamic of that team and the strength of each of those characters in each situation that governs how we react and respond in different situations. Through my yoga I’ve learnt to practice sitting back, observing those characters, trying not to get involved. This was especially important as a riot was about to break out.

As I was heading towards that blue wipe-down arm chair in the ward and the injections were being prepared two main characters piped up for war. One was that of relaxation that was dominating when Hazel and I were in the café, that had gone through the deep relaxation with Jan, that knows how important it is to be relaxed. The other was that of fear that triggers a crazy pounding heart, adrenalin, sweats and contraction. I’d practiced my routine for chemotherapy quite a bit before the session began so I had the yoga nidra (deep relaxation) and visualisation that I was going to do during it and a play list of chanting and kirtan as well. But there was no way of practicing for the warfare that was about to begin in my head.

It was such an interesting experience and it wasn’t easy to sit back, watch and not get involved, and try and settle the fear. But with my utmost determination and willpower, that terror that was trying to sabotage the process for me died away and I went on my way with my meditations throughout the process and welcomed the chemotherapy into my body so that it could do the best job that’s it’s capable of doing, of mopping up any cancer cells that remain.

So despite the attempted warfare, the session itself was fine. In fact, the chemotherapy ward that I described in my last blog post was nothing like I perceived it last time either. I mean, I was in my own little meditative world but quite aware of the amazing representation of society in that room, each person with their own coping mechanisms: a gay guy behind me that had flowers, chocolates, the whole shebang. Vistors every 10 minutes entering the room, accompanied with intermittent roars of laughter; a gorgeous woman a similar age to me next to me who said she had a 2 year-old, also at her first chemo session. She was also sat there with a smiley sister. Then a middle-aged woman across from me sat quietly on her own getting on with it all.  There was something rather comforting, I felt, about that whole scene. Not sure exactly what. Maybe it was the diversity in the room – that we’re all going through cancer, whatever ‘shape’, ‘size’ or ‘type’ we are and we’re all getting through in our own way…

Hazey and I went for a little picnic on Brighton beach and ‘debriefed’ on our experience before heading back home.

The rest of that afternoon and evening was hell to say the least – the anti-sickness stuff that they gave me didn’t quite work for me. Not an experience that I’d want to re-live. So we called a duty doctor that night to come and give me another anti-sickness injection and that did the trick…and there’s been nothing like that since. Energy levels have been up and down but generally it’s all been ok.

One of the hardest things so far I guess is learning how to let go. Not having any expectation of what I’ll do next or how I’ll feel because I just don’t know, and just learning to be with what ‘is’. That, along with the change in my sensory experiences I suppose. My sense of taste and smell changed drastically for the first few days after chemo. Everything tasted and smelt gross. The smell thing isn’t too hard to deal with. I just made sure I didn’t go anywhere near anything that had a fragrance. But the taste thing is harder to deal with. It governs your gag reflex and your desire to eat. Slightly tricky when you’re hungry but you know that the food has to pass through your mouth first in order to satisfy that hunger. It’s part of the letting go thing I guess. Having no choice but to give in to the fact that eating and drinking at that point is not for pleasure but for sustenance. I was kind of going through a bit of a grieving process with all that, when unexpectedly my pleasurable sensory experiences returned after about Day 4.

I just find it so incredible – that innate ability of the body to rebalance. I’m experiencing it first-hand. It’s unfolding in front of my own eyes. I’m doing everything in my capacity to help my body recover, protect itself and recooperate and it’s doing it. I’m not saying I have any idea how the rest of the process will unfold, but right now it’s in a process of rebalance. From limited energy to more energy, from sensory changes back to normal senses, from constipation to normal bowel movements, from groggy mornings that I wasn’t able to do my yoga practices to mornings now that I feel normal and am able to. Kate and I went out to a Turkish restaurant last night to celebrate, after I’d been to a totally gorgeous young women’s breast cancer support group at the Olive Tree in Crawley. Gees, food…and life…have never tasted better. Life is B…E…A…U…T…I…F…U…L.