And so a period of relative freedom draws to a close. Tomorrow I go in firstly for an echocardiogram to check my heart is still looking OK, then upstairs to my good friends in Ward 11 to start Cycle 4. This is the same as Cycle 2 – 1 day of Rituximab, which takes about 4 hours followed by 2 days of Citarabine, which according to my blog # 13 was pretty bad. It is great writing this stuff, but reading it back is a Bad Idea! One change is that I should be able to go home overnight after the first day as the actual drip doesn’t last as long as the other 2 days, which are each 9am to 12pm then 9pm to 12pm, when of course I can’t go home. We are doing some strategic planning in the food department so I can have as little contact with hospital food as possible. According to my last blog I think I only had minimal contact with food anyway on the final day and that reappeared pretty quickly – so we probably won’t waste our nice food on a two way street if that is the case!
It is 4 weeks since the last cycle and a lot has happened in my head and heart since then. The mindfulness exercises have been hugely beneficial and I feel far calmer than I did – the wonderful thing being that you can do them anywhere and nobody will notice. For anyone that hasn’t come across this, here’s what you do. As you breathe in, a nice slow breath, you say to yourself ‘As I breathe in I know that I am breathing in’, then as you breathe out ‘As I breathe out I know that I am breathing out’. Doing this in the middle of a frantically busy day or a difficult procedure really does give you a moment to reconfigure and get your bearings. I have come to see that some part of me loves being swept away into BusyBusyBusy mode which then becomes a self-fulfilling prophecy. I feel stressed and busy and perceive every interruption to be ramping up the pressure even more. I know I always was like this and no doubt got used to feeding off the adrenaline rush, but the difference now is that my throat starts to ache and I get very tired if I don’t break into it with a mindfulness moment periodically. It is hard to believe that such a simple technique can make a difference but it does. There was a period a few years back where I used to come back from work and wrap myself in my meditation shawl and really seriously meditate for at least an hour. This happened to be a time when I didn’t have anyone else around so I could take that luxury, but it is more difficult now. I find the mindfulness moments are more than adequate, and in some ways more beneficial. Having a nice long sentence for each breath does make you slow down and as Thich Naht Hanh points out, actually enjoy breathing. I am in a much better state to carry on working for a while once I have done this.
Something else I have been practising is focussing on whether or not I am available for someone to talk to or for a particular activity. Like so many of us, I’m sure, I have become very adept at multi-tasking. Not only is it very tiring – which I don’t have the capacity for now – but it also means you aren’t really paying attention to any of the things you are doing, or the people who are hoping for a sensible conversation with you. It is a concept discussed in Rachel Neumann’s lovely book, ‘Not Quite Nirvana’ and it is a technique taught to her children when they were at school. (See Book Blog for more info.) Brilliantly clever and I would love to have had the chance to use it with my boys when they were small. Rachel’s children used to tap her on the leg, or wherever they could reach, and ask if she was available. This had the effect of making her question whether she could pay them attention or not at that particular moment. If she could, it meant stopping whatever she was doing and listening to them rather than only giving them half her attention. Which children immediately spot and of course play up to. The whole concept is interesting though because it does make you question what you are doing with that moment of time. Not the one you had a few minutes ago or the ones that are still to come. This one. And if you are fully in this moment there isn’t space to worry about what is coming next. I have found this especially useful when I am thinking about forthcoming treatment – it is a double-edged sword to have been through the chemo cycle once. I have decided that knowing what is coming is very slightly worse than not knowing, and that effect is at least tripled when I have written about it and read it back by chance!
You could also interpret multi-tasking as a way of people-pleasing for those of us with wobbly boundaries. You don’t say ‘No’ to someone, you just expand a bit to include them or whatever it is they wanted. I learnt a bit more about this as you will see. I have been fortunate to have some fabulous healing this week: sound healing with Crispin, which took me completely out of myself and gave me a wonderful release from my physical body, and crystal healing with Jeni, which certainly gave me some revelations. I need to digress a bit here. I woke up early the other morning and was fortunate enough to hear the dawn chorus. We have changed rooms recently to the back of the flat so the most we hear are the screaming seagulls, and my, are they screaming at that time in the morning! On this particular morning though, I heard a really sweet song. No idea what it was, sorry – really rubbish at identifying birds and their songs. I listened hard to the bird and moved into a spontaneous and totally relaxing visualisation. I’m not any good at the ones that are supposed to lead you into a meditation. I’ve lost interest by the time you have walked down the path, smelt the grass, appreciated the blue sky and found a place to lie down by a babbling brook….nooooooooo. This one took me straight into lounging in a gently swinging hammock in dappled shade. The temperature was just how I like it, the nearby sea a wonderful shade of blue, the bird was still singing, and everything in my world was perfect. I was also basking in the wonderful flow of healing that has been sent my way. How clever is my subconscious?
OK – stay there in the hammock if you will. No hardship there. I was having the crystal healing session with Jeni when I was asked to relax further and take myself to this lovely hammock by the sea, which I had mentioned to her earlier. As soon as I tried to relax , as opposed to it happening naturally as it had before, all the feelings of guilt, and ‘I should be doing something not slummocking here’ came flooding in as did a few tears at the realisation I was spending some time on ME. What became obvious is that I felt bad giving myself time out – not being available – and Jeni pointed out that becoming emotionally involved in that situation was counter-productive. She asked me to step back so I could observe the emotion of the situation but said that I didn’t have to feel it. I didn’t need to actually be upset, which was a real change from other healings where I was allowing things to come up so I could ‘deal’ with them. After years of doing this I was quite frankly tired of getting so upset. It is also really physically exhausting and I need all my energy to get well. I realised that this reaction was following old habits and that if I was truly in the moment I could separate it from all those other moments where I had been upset. Sounds easy but it was really hard, and I need to practise it so it flows easily, without effort. I get emotional very easily, whether it is picking up other peoples’ emotions or my own spilling out when I would prefer them not to, so this technique will be a welcome relief from the habitual ‘opening the floodgates’ routine. I can also use it to distance myself from stressful situations that I would prefer not to deal with but have to – it is a good exercise in strengthening my boundaries and thus in looking after myself. In true Libra Ascendant style I have usually compromised in the past so that everyone is happy. I have avoided conflict at all costs as it makes me feel so bad, with the result that everyone except me gets what they want or need. Hmm. I wonder where that fits in with my illness? It isn’t easy to change but the realisation that old patterns contributed to where I am now is a huge motivator.
As a further quest to survive better the toxicity of Cycle 4 I have just been using EFT to tell my subconscious that although the chemo is considered by some to be toxic, I trust it to target any remaining cancer cells and for it to leave my system safely with no side effects. The double edged sword of knowing what to expect has served me well when I consider that it has helped me to gather some phenomenally powerful techniques. The irony of the situation is that I had to go through those first few cycles to find out what it was I needed to help me through the later ones. Talking of irony, I did have a laugh when I was with Jeni: before I arrived she had picked a card for me at random from a crystal oracle pack. The card? ‘Joy and gratitude’. I had to laugh. She was obviously concerned at how on earth, in my current situation, she could possibly sell me this one in a positive light. We both had a good laugh, actually. But honestly, I can say that this whole experience is giving me a lot to be grateful for and joyful about. And I don’t mean in a ‘Oh, it’s a lovely day and the sky is blue’ count your blessings kind of way (which irritates the hell out of me). I am incredibly grateful to the lovely people who have reached out with love and healing to support Stephen and I, and our families, through all this. I am grateful that this experience has given me a new level at which to talk to people. It is like when a loved one dies, nobody knows what to say to you – but I am finding that as I break the ice with them about my cancer, they too experience a big release and are able to gain some healing from the situation. Almost everyone knows someone who had or has cancer, and they all have their stories, regardless of whether those loved ones lived or died. What this has given me is a greater reason and a more meaningful vocabulary with which to talk about the far deeper aspects of life, the ones that matter to me a great deal, than I had before. The joy I get from this is immeasurable, and I feel as though I am finally starting to find out what it means to be me.
A good example of this is the two sessions of HBO therapy I managed to get to this week. Picture the totally ludicrous situation where five ordinary seeming people pitch up at a therapy centre in the middle of nowhere. Instead of taking outer clothes off, everyone adds a layer. Outdoor shoes are exchanged for, on the whole, pink (yes!) fluffy slippers (except for the guy, who has fluffy walking socks) and when everyone is ready we congregate in the metal diving bell. The door is closed and we sit around chatting as our ears pop, the temperature drops significantly and we ‘dive’ to 33 metres. Obviously we’re not really going anywhere, for anyone who has just joined the story. At the mark ‘Masks On’ we dutifully don our oxygen masks so obviously all conversation stops. Mostly. Two of my neighbours needed to discuss a particularly stunning chocolate cake recipe they saw in a magazine (difficult in a mask) but apart from that it is quiet for an hour except for the regular Darth Vader breathing of the assembled party. When the hour is up we take our masks off and chat for the next 10 minutes as we come back up to normal pressure. The difference is that although there was a certain amount of discussion around chocolate cakes there was also a lot of talk about what we are all dealing with. These people were MS sufferers and the guy had permanent nerve damage due to a stroke and diabetes. Rather than turn into a pity party, what this kind of gathering does is allow you all to tell it like it is. Nobody is shocked, everyone is open, because we have all been dealing with our own dark nights of the soul, and it is so good to share it. Maybe the excess oxygen has something to do with it, but it was liberating to be able to talk to them, and a privilege to listen to their stories. Being seriously ill allows me to jump in at the deep end, because that is what everyone wants to talk about and what they are most scared of. I’ve decided to leave the HBO therapy until after I finish chemo. The best results are obtained through regular dives, 20 sessions as close as you can have them. Trying to fit them between chemo cycles is likely to lessen their effect considerably so I will return in a couple of months. I will miss my new friends and the depths of our sharing as we dive…but I look forward to seeing them again as soon as I can.
See you on the other side of Cycle 4!