14. Weekend Reflections

So, I think it is fair to say that I left the last blog in a state of depressed contemplation. Sorry about that :-). I have to say that on a temporary basis things didn’t get better. I woke up in the early hours of Wednesday morning and, thinking my heart had calmed down, tentatively got up to use the bathroom. It hadn’t calmed down. By the time I had walked the 3 steps to the bedroom door I was dizzy and sick, and came crashing down against the doorjamb, sending the nearby laundry basket flying. Poor Stephen, dragged from his dreams, was with me in seconds, worried out of his mind. Fortunately there was no blood, but I really had banged my head hard. Blood platelets don’t stick together to clot the blood when you have chemo, so I spent the rest of the night worrying that I had an internal bleed. There was no way I was calling the ward as I knew they would want me straight in and I was too angry and upset to be able to deal with them. I have found that when I am in a state like this I only want trusted people around me. I was furious that these things were being done to my body and I didn’t seem to have much say about it – the last thing I wanted was to be delivered back into the hands of the people perpetrating the discomfort. Fortunately I had a blood test the next day and would hopefully be able to deal with the situation a little more calmly then. My nose wasn’t streaming blood so I figured I was safe for a few more hours yet.

Wednesday dawned bright and sunny and Lyn came to collect me for my weekly bloodletting. I was very glad she was, as my heart was still ricocheting around my chest and my poor bruised head was hurting. I was still very low and together we discussed our strategy for the hospital. I was so pleased she was there to support me as I didn’t feel strong enough to run the gauntlet of the medics on my own. I felt the issue was that the new heart drug I was on was not only not stopping my heart from going into an irregular heartbeat episode, it was doing something to my system which was creating the sickness and dizziness once it had  – which had never been there before with such ferocity. The blood tests are followed by the appointment with the MacMillan nurse, who does a fabulous job of coordinating a cancer patient’s needs. I told her what had happened and asked that she find a doctor for me to talk to as a matter of urgency. She was brilliant. Within minutes she had one of my doctors from Ward 11 in the room and we started negotiations. We went round in circles for several minutes as he wanted to keep me on the higher dose of Bisoprolol. One of the side effects of this drug is dizziness and sickness. Amazing isn’t it? What are they thinking when they create these things? I, quite naturally, wanted to take the lower dose. Or none at all. He parried with, ‘I think we should give you another tablet which you take when the attack happens, as a one-off, and stay on the high dose of Bisoprolol’. I reply that I am happy to try this new one-off tablet if I can stop the other one or drop the dose. I do think I have some logic going here, and as I am the one getting the horrible side effects I am determined to carry on. A smile and wink from Lyn confirms this. We carry on like this, and eventually I conclude that we are saying the same thing – he wants me to take another drug because this one isn’t working. EXCELLENT. I learnt long ago that the basis of good negotiating is to start from a point of agreement. Moments after that he agreed to drop the dose, and said that he just had to speak to the cardiologist to confirm it was OK to try the new tablet.

Fast forward – back in the waiting room and the doctor returns from his own negotiations – I can’t have the other drug yet because it might not be right for my particular problem, so I will need to have a 24 hour trace sometime next week. I point out that now would be a good time, if ever, as my heart is currently misbehaving in a spectacular fashion and it would be wonderful for them to work on a scan of that. Next week it would probably be very well behaved and we wouldn’t get the same result. Fast forward another few minutes and we’re called in to see the next doctor down in the pecking order to collect the prescription for the lower dose drug and organise the heart trace. Bless him. His opening gambit was ‘I don’t understand why you feel the need to drop the dosage. We would like to keep you on the higher level.’ Oh no. In my fragile state I had to go all through it again, only this time I was getting angry. I asked him how he could possibly expect me to have any kind of a life when apart from dealing with the effects of chemo, I also have to now contend with being totally incapacitated and needing 24 hour care for 2 days every week or so, because I am keeling over from the drugs that they insisted I take. Which weren’t working anyway. Lyn moved in with a final thrust and he wrote the prescription.

Next stop ECG, where I was trussed up like a turkey with the heart monitor. The sensors had to be interwoven with my tunnel lines, then all the cabling hidden under my t-shirt, with the magic black box clipped to my waistband. Walking Frankensteina doesn’t begin to describe it. We thought we would take a jolly down Christchurch High Street just for a laugh to see if I could do so without tripping over my own cabling. I did, and Lyn bought me a lovely lunch.

I am sure you can imagine that all of this is very damaging and intrusive, even for someone who is well, but it isn’t an experience that can be avoided or stopped, once it has started. You just have to deal with it. My big challenge seems to be in learning to deal with these events from a place of calm, or mindfulness, so that worries about the future and what may/may not happen, and whether or not I have control over it cease to affect the present moment. With this in mind, and in great need of inner calm (heart still jumping about) I went joyfully the next day to see my friend Crispen for some sound therapy. If you haven’t done this, try it. It is truly an experience sent straight from heaven. The first time I had a treatment I was reduced to tears by the sheer beauty of the sound. This isn’t like a gong, or chanting, or anything you can possibly imagine. It is the music of the spheres incarnate. If in some greater realms there are lofty celestial halls thronged with wise, loving souls, then this is their backing music; no ersatz, horrible lift music for them, oh no. This glorious sound truly sings the soul back home.

You lay on the floor within a pattern of crystal and glass bowls, positioned so as to align with the chakras; other acoustic wooden and metal instruments are also used to enhance the process when appropriate. Struck firstly one by one (with a wooden stick covered in suede), the bowls are then eventually used in combination to produce stunning harmonies which last for an eternity. The sound goes straight through you, into your very bones. This time I also saw colours. Careful readers from previous blogs will note that I am on a journey of introspection and I was interested to see what this healing session would produce. When Crispen got to my throat chakra I was expecting a very strong reaction as it is not only the site of the cancer but also the place where I feel most blocked. (Obviously). This means that anything emotional tries to come pouring out, which frankly can be a very unpleasant feeling as I want to both release and block at the same time. It is always a battle and I don’t enjoy it at all. I have done a huge amount of releasing, and the fact that there still seems to be a bottomless pit of emotion indicates to me that whatever I’m doing isn’t working. This time was different though, and it only elicited a few tears, in a very gentle, ‘Oh yes’, kind of fashion. The very clear message I was getting was to open up. I had already started to feel this in previous sessions of EFT and meditation so it was good to have it confirmed in such a beautiful and gentle way. Introspection is all well and good but you still have to have a sense of direction: I am enjoying the experience of quietly watching to see what comes up, and to see where following that whisper leads me. So I was laying bathed in sound, wondering why I was finding it hard to open up. I saw myself, almost from above, as being closed and scared. Closed down, although I had done so much work in the past on letting go. Why? How much more can I do? But letting go is different from opening up, isn’t it? Letting go is a release, whereas opening up is an invitation to visit. And are we brave enough to see who will come visiting? Enter the fear.

Once we start talking about fear and get over the obvious ones, fear of dying, fear of losing your job, partner, health, etc., you start to look at how fear actually affects your daily life, and how it might have been a pattern since early childhood – possibly rooted in some almost imperceptible slight or incident many years ago. My mum told me how I would have nightmares as a tiny tot. This grew into a fear of blowing newspapers (there seemed to be a lot where I lived, near the marshes in Essex), men (?!), and loud noises. What on earth was going on in my impressionable and unformed mind that could possibly have upset me so much, so young? I wondered how I would be able to find out, then I realised that it doesn’t actually matter. I realised that I try to understand the world using logic a lot of the time. Although I am a Cancer Sun and empathise in a watery fashion all over the place, my way of understanding any crisis is where my very left-brain, logical Virgo Moon runs amok. I think I do this too much. It occurred to me that what I am dealing with is something that doesn’t necessarily have an answer. I don’t necessarily need to know that a particular event, either in this life or a previous one, has created the reaction of fear in me, and it is that I need to spend time with. I have spent huge amounts of time going back to forgive, integrate, acknowledge events and people that have hurt me in the past, and in past lives. You name it, I’ve done it, and for me, that strategy (good Virgo word) isn’t working. I am watching a beautiful presentation by Thich Nhat Hanh on mindfulness and fear. It is the worry about the future (which is pointless) and sadness or regret for the past (which we can’t change) that intrudes on our present and I know I am guilty of both.

Both Stephen and I are finding that our world is changing tiny bit by tiny bit, on a daily basis. We have always talked about these kind of things but our conversations now have a passion and vigour they didn’t before. This isn’t just armchair philosophising or intellectual discussion. This is a real life situation that needs more that just band aid and placations, and it offers, as nothing has before, a massive opportunity to explore our inner landscapes and wonder at the complexity and potential contained within. As Joseph Campbell says, ‘We must be willing to get rid of the life we’ve planned so as to have the life that is waiting for us.’ Amen to that.

Happy Sunday

Margaret xx

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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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5 Responses to 14. Weekend Reflections

  1. Judy says:

    Margaret, this is just brilliant! Incredible insight and inner-sight. Big hugs xxJ

    Like

  2. Dolores. says:

    DEar Margaret,I am filled with wonder at your courage. I looked at your photo and tried to send you all the love I could.. hope it reached you. know you are loved always

    Dolores

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  3. Stephanie says:

    The journey you’re on and the insights you’re sharing are an inspiration to us all, Margaret. They certainly are to me! Keep negotiating, keep fighting and keep blogging!

    Sending you love, light & healing.

    Sxx

    Like

  4. Neil says:

    Thanks for the reminder about fear in our lives. Joining you on this journey puts a lot into perspective and will make us all a lot more appreciative of what we have.

    Like

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