13. Inside Out

The first few days after I get home from hospital are always very thought provoking. I think we have already established that there is zero opportunity for contemplation on the ward because of the constant interruptions, but also because my body is being subjected to a whole load of trauma; it is only once I get home that I have a chance to find out how it has reacted and what it needs from me to help it recover. Swamiji gave me some very wise advice before my first treatment: she said I should wait to decide on any supplements and healing until after the treatment and have faith that my body would guide me. It did and it does and it is truly wonderful. Listening to myself is proving to be my way through the maze of debilitation which follows chemotherapy. This cycle was truly horrible, which I understand is a lot to do with the cumulative effect of the treatment – so, mentally, I have to find a way of dealing with this. Realistically it will only get worse as I progress through the cycles. I can hear all the positive thinkers amongst you (especially the ones who haven’t had chemo) throwing up your hands in horror at such an apparently negative statement, but I think this is really important. I was very lucky to feel comparatively well after the first cycle (antibiotics and palpitations notwithstanding), and I thought I would be equally fine after the second, but that was neither the truth nor a realistic expectation – and the disappointment at the let-down is almost as bad as the feeling bad after the treatment.

Taking Swamiji’s advice, and suffering from nausea and headaches, yesterday I retreated within to listen to my body’s cries for help. I find it quite easy to get into a meditative state (having had an excellent teacher!) but I was feeling so rough yesterday that I needed something evocative to help get me there. I am totally in love with a video on youtube.com of a flashmob meditation in London on 2nd June 2011 which features the track ‘The End of Suffering’, spoken by Thich Nhat Hanh (with background chanting and music) from the book and CD package Graceful Passages. Hopefully you can see it here http://www.youtube.com/watch?v=mqZA5cToPgs, if not you are all bright enough to go find it for yourselves. The whole flashmob meditation idea really appeals to me and I’d really like to participate in it on a warm sunny day when I am better. Or even if I’m not better – just warm and sunny would be good. The rigours of hospital, its lack of peace, extreme bias on western concepts of care (obviously) and awful food take a huge amount out of me, and one is discharged to go home feeling very depleted indeed. It is pure irony that the doctor always asks, ‘Do you feel well enough to go home?’ I was so close to saying, ‘No, I feel so bad I have to go home,’ but didn’t. They have no idea. So I needed the feel good factor, and this video is definitely it. Sunshine, beautiful music, people sitting peacefully in the middle of central London. How much better can it get?

First I watched the clip on youtube then I replayed it, getting myself comfy to just listen to the 7 minute meditation that led me gently into my own, and from where I could tap into the massive stream of healing that has become available to me through all of you lovely people. I was able to let go of the discomfort of my body and soar upwards towards the safe place where I could tune into it and hold it gently as it wept. And weep it did. The chemotherapy is one thing, and I am slowly coming to terms with the necessity of its toxicity, but the other drugs you are given to counteract the side effects are quite another thing as they are unbelievably damaging in their own right. My body was screaming ‘Noooooooooooooooooooooo!’ to all the other stuff as I meditated. As I came out of the meditation I knew what I had to do.

In hospital I was being given intravenous anti-nausea medication which apparently causes headaches as a side effect. So as well as having the potent anti-emetic I was having paracetamol and codeine to counter the headache. As they weren’t lasting the appointed hours before all the discomfort came back I needed other pain relief and other anti-emetics to keep me going…this was getting silly. Especially as there was very little food in my stomach to absorb it. You can see why my body was traumatised. I used to suffer with migraines as a child, and one of the things I noticed because of that was that the sickness and headache always came back together. Once I got home I thought if I could control the sickness the headache would go. It did. Brilliant! 4 less tablets to take! During the meditation I had discovered this wasn’t right either but I didn’t know why. I found that the anti-emetic Metaclopromide tablets (different from the one given by IV) were running out before their allotted time. I wondered about calling the hospital to see whether I could take more, but a little voice said, ‘Side effects, Margaret. Look at the side effects’. OMG. I am so pleased I did. As the drug wore off (often after only 2 hours) I really felt I couldn’t sit still. I thought it was because of the discomfort from the returning nausea and headache but it is one of the side effects. Once I started reading I was horrified. This is a really serious heavy weight drug often used in the treatment of migraine (how strange is that? See, my intuition was good!), that has serious heavyweight side effects and I was thinking of asking to increase it. I decided to stop taking it and deal with the problem from the headache end first, ably abetted by peppermint tea for the sickness. Hope you aren’t bored rigid yet. Anyhow, that sorted out a lot of the problem and I went to bed a much happier and healthier bunny having tipped fewer tablets down my throat.

This morning didn’t start well. After such promising progress last night I awoke to my heart exploding out of my chest and the sickness and dizziness I usually get when it does so. Depressed doesn’t even begin to cover it. I felt incredibly let down all over again and I couldn’t believe that my heart had started to join in with this horrible 3 weekly scenario at exactly the same stage as on the last cycle. I was completely at sea and it was only when a friend arrived to take Stephen out for a (much needed!) coffee that I realised a chance had emerged to spend some serious ‘going within’ time. Not that we don’t give each other space, it is just different with someone else around. I didn’t want to talk, I wanted to ask my body again what it needed.

This disease is providing the most amazing opportunities to seriously experiment with all the various therapies and techniques that have come my way during the last few decades (yes, decades). Although I have had my dark nights in the past, this is definitely the darkest of them all, so a serious road test of several of them is in order. Several people have mentioned EFT – Emotional Freedom Technique – and I have to say that in the past (and I tried it again when we covered it in Judy Hall’s Good Vibrations) it hasn’t done a lot for me. I decided to watch a clip of how to do it as sometimes words aren’t enough. I found http://www.eft.mercola.com which is an excellent site for a real hands-on, ‘how-to’ example. I watched it all the way through then repeated it with my own words and let my body guide me. Oh my word. The flood gates opened. One of our cats, Rowan, was sitting next to me and she made a cat equivalent kind ‘Ah no, poor you’ type of noise and climbed up to lick away my tears. Really. The only reason I have gone into this much detail is to show people who haven’t found time for it, or don’t think they need it, HOW IMPORTANT IT IS TO LISTEN TO YOUR BODY. I was drawn to EFT after years of not using it and it provided a massive release for me.

In case you haven’t guessed it, I am going through a phase of asking myself what I need – just for those who have done what I do in a slow article and cut to the end to see if it has perked up. Bad habit I inherited from my dear mum. I have had masses of advice from everyone over the last couple of months, and some of it has felt right and some of it I have had to give thanks for and discard. Every approach isn’t right for every person. I don’t feel like positive self-talk or affirmations (outside of those used in EFT which are different). I have been doing that for years and I am now very ill, so rightly or wrongly, there is something in me that hasn’t been recognised in that process and I need to discover what it is. I am using some incredibly powerful books to help me with this:

The Journey by Brandon Bays

Broken Open by Elizabeth Lesser

Dying To Be Me by Anita Moorjani

Fabulous books by fabulous, brave, ladies. I take my pink hat off to them as I delve into the treasures they offer. I run the gauntlet of Ward 10 blood tests tomorrow and all that entails, then some lovely Tibetan Sound Therapy on Thursday, but for the rest of the week I am looking forward to contemplating my navel and seeing what it has to tell me.

This blog might have seemed a bit heavy after the last, but these thoughts need to mature like a good wine…and the periods after chemo seem to be when they do it. And for all those needing to know about drinkies on Sunday night I did ask one of the nurses – it happened to be the one who suggested it on Christmas day, which was a stroke of luck. The bad news was that the drinks trolley had only offered port and sherry (eeeiuw!) so I wasn’t gutted that it hadn’t been instigated. I was at home by Sunday anyway and I can assure you that a cool glass of chardonnay would have ended up a very long way from my stomach at that point :-)

With warm wishes for your ongoing health

Margaret xx