102. Dory Unveiled

So. It’s been an embarrassingly long time since my last post – nearly a year, actually – and I want to truly thank the people who have been in touch to check that I’m still alive. I definitely am and I’m very grateful that you are checking in on me – I didn’t mean to be so inattentive, but ideas for blogs kept slipping into my mind, then back out again, and nothing would really stay put – so I didn’t post. But I did take a lot of pictures at the beach. Here’s one to get you started.

 In an effort understand the inattention and so possibly tame the Dory Effect (watch Finding Nemo for more background) – aka me wandering off-point very frequently – we bought something called a Mendi device. Heard of it? Thought not. It’s based on the principle of biofeedback, which monitors the activity in the brain and it can show just how much you go off-topic when you’re supposed to be focusing on calming down/directing your thoughts etc. That’s obviously the abridged version. There’s no point me going into unabridged waters as I’d just be copying from Dr Google or the manual, both of which are boring, BUT it’s a cute little device consisting of a white headband (my Virgo Moon just loves that) which straps around your forehead and is linked to an app on your phone (of course it is). It’s the first version that’s available outside of a clinic setting so knowing that my mum loved using it at the Bristol Cancer Centre, many, many moons ago, I was excited to try it. Once I’d given it several goes myself I wired Stephen up so we could compare notes. I think that’s where, if there was even any doubt, the Mendi proved itself. Stephen is able to hold focus on a single project for literally hours, which is why he can play chess and I can’t. By the time I’ve figured out the next five ‘what if?’ moves I’ve forgotten where I started, so it’s pretty much game over before it’s even begun. He has 1, maybe 2 windows open on his computer and I usually have at least have 27, plus 4 social media accounts on my phone and 3 email accounts open at any one time.

Back to the device. Among other things, it measures how long you can focus on making a little ball on your phone screen move in a continuous upward direction. I was chuffed to bits that after several attempts I managed 27 seconds. First time out Stephen did 57 seconds and couldn’t understand what all the fuss was about. We both played around with different ways of settling our minds while using it: reading, meditating, focusing on the breath, focusing on the little ball on the screen, not focusing on anything, and came to the conclusion that it didn’t matter what we focused on – so long as there was a focus. Which is where my (lack of) ability to focus showed up like a bright flashing beacon in a dark sky. Because try as I might, I find it almost impossible to keep my focus on anything for more than a few seconds.

Enter the Dory Effect. I’m sure this is familiar territory to anyone dealing with ADHD etc., but it was news to me in the context of the way my own mind works. It also completely explains my extremely poor memory. Case in point: at five years old I was chosen to play Wendy in the school panto of Peter Pan. I vividly remember sitting on the pretend bed in rehearsals with a teacher patiently reminding me of my lines. At least she started out being patient, but it soon became obvious that I was way more suited to playing Tinkerbell, who in this version had beautiful wings and fortunately no lines. That was the beginning and end of my drama career, so you can understand why I’m in complete awe of actors who can rattle off a Shakespearean soliloquy without even breaking into a sweat. I’m lucky if I can remember the point of my sentence, but I guess I’ve learnt to live with it. I must admit that when they warned me that chemo could affect my brain function I hoped that maybe, by some strange quirk of fate, it would actually help me, but that doesn’t appear to be the case. Enter the Mendi, where I can at least keep track of any changes in brain function. No jokes please.

So anyway, maybe now you can understand how the ideas for the blogs come and go. But in the background there has been a growing question in my mind. When I first started the blog it was filling a need. After my initial diagnosis time speeded up and the blog served as a means of keeping in touch so that Stephen didn’t have to spend hours on the phone every night keeping loved ones in the loop. Then it unexpectedly became a great resource for me as the posts touched down in far-flung places, as well as those closer to home, and messages of love and support came in from around the world. There’s something pretty wonderful about knowing that someone on the other side of the planet, who you will probably never meet, is sending you healing and good wishes. Funnily enough, before the idea of the blog took actual form, I had started writing everything down in a journal because I felt the need to pour everything out – but after reading back the first couple of vicious and tear-fuelled entries I decided that putting a lid on all that darkness wasn’t a good idea. I needed to release those words and give them the freedom to fly in the hope that as they took flight they would gain light and optimism and hope, and all those things I couldn’t feel as they poured out of my mind onto the keyboard.

And they did, and the blog became a crucial part of me surviving the treatment and moving forward into recovery. The genie was well and truly unleashed, so out of the sheer love of writing I continued the blog (more or less – currently less!) and went on to author two books – and life began to regain a sense of normality. It’s now an amazing nine years since the stem cell transplant and I find myself much changed. I’ve discovered that people have different coping mechanisms in these situations, and I remember reading that Jennifer Saunders simply put her cancer experience behind her. That was then and this is now. Door closed. Her words, not mine. But I feel that my own experience has informed the person I am now, and I actually like the added dimension of understanding – and hopefully empathy – it continues to awaken in me. I hadn’t realised that my own coping mechanism was to go deeply into my feelings as well as the background of all the medical stuff being thrown at me, and on the blog I could go as deeply and darkly as I wished. My blog, my rules.

But one of the other reasons I haven’t been writing very often of late is that I’m aware the blog was originally about cancer, so going off-topic isn’t relevant to the people who have found it whilst researching their own diagnoses. But then I guess if I move on to other things they can just start at the beginning and hopefully find what they need as they read through the posts – and possibly even follow me on through the twists and turns of this strange thing called life, which would be kind of nice. In the last few years I considered renaming it, or even starting a whole new blog about atrial fibrillation, as that has turned out to be my next fiend, but somehow that didn’t feel right, so here we are. Same blog, slightly different direction, but still the same me. Kind of.

There Have Been Changes in the last year. In the last blog I talked about starting a One Year No Beer challenge to give my heart a fighting chance of righting itself naturally. Alcohol affects our health at every single level of our being, and as by the middle of last summer I was on several medications and being referred for an ablation I thought I should do a bit more to help myself by completely dropping the chardonnay. Within a few weeks the results were very clear as my BP and heart rate were massively improved – but that clarity was like a layer of the onion being peeled away. I was shocked to read that the side effects of the drugs I was taking for fast, irregular heartbeat and breathlessness were… irregular heartbeat and breathlessness. I was not happy. My earlier blogs document my feelings about pharmaceutical drugs in general, so I’m not going to repeat myself here, but I did know that with the changes brought about by dropping the alcohol I could at least try to lower the meds. Long story short, I still have AFib, but it is much reduced and with my doctor’s blessing I’m off the ablation list and am now taking a low dose of beta blocker, and a natural enzyme to prevent the blood clots that can occur as a result of the irregular heartbeat. You can PM me if you want to know more, but suffice to say, I’m about a million times better than I was last year. Incidentally, as a part of this I have also started collecting the birth data of people who suffer or have suffered with atrial fibrillation and I need a lot more. If you would like to be included in the astrological study I’ll be doing, please do get in touch.

But I still have the persistent AFib so I’m clearly not there yet. In keeping with my apparent coping mechanism, there is a feeling of ‘what next?’ which also fits in with the Dory scenario. We all have stress, we all have triggers, and we all reach for that mug of coffee/glass of wine or go for a walk/run in order to avoid dealing with the uncomfortable feelings we don’t want to face – even if that feeling is boredom or a lack of direction. A while back I signed up for the Plum Village newsletter, and since Thich Nhat Hanh’s passing other Dharma teachers are coming to the fore. Senior Dharma teacher Brother Phap Hai has become a firm favourite and his book Nothing To It has helped greatly in my efforts to calm down and deal with life in tiny moments rather than worrying about it in big chunks.

My early birthday present

The newsletter also introduced me to Sister Dang Nhiem, previously a doctor, whose life experiences led to her writing about recovering from trauma and the ways that focusing in on our bodies can help us to heal. See Flowers in the Dark: Reclaiming your Power to Heal from Trauma with Mindfulness among others. Possibly not actual news to a lot of people, but it’s the way she does it that makes the difference. That was a surprise, having initially thought I’d already bought the t-shirt on that one, as her gentle encouragement to probe ever more deeply made me realise how much more digging I have to do. Way back in a very early blog I wrote about asking which supplements I should take to help me get through chemo, and my beloved Swamiji suggested I wait and listen to my body to see what it needed. I remember writing with tears running down my face that it was screaming. Even remembering that is painful, but it just shows that our bodies will give us messages if we will only quieten down to listen to them. This brings me neatly back to Dory and Mendi and focusing, which we now know I officially find difficult. Using Sister Nhiem’s techniques I’ve learnt to tune into the sensations of my body and discover that there are many emotions – and of course memories – which exist below the irregular heartbeat, but I’ve found they are starting to lose their potency as I learn to gently accept them and send them love. The panic within dies down, and it’s become a beautiful and extremely powerful process which I actually look forward to, as each session clears a few more weeds from the path that leads towards better health. So there is progress.

As I’m in book mode, I’d also like to mention the absolutely astounding, everyone-should-read-it book by Bessel van der Kolk, The Body Keeps the Score. A big shout out to Swamiji for suggesting that one, and for showing me that everybody is carrying some form of trauma which is affecting their health. If you have the stamina for more intensity, In the Realm of Hungry Ghosts: Close Encounters with Addiction by Gabor Maté is unputdownable. Addiction isn’t just about drugs or alcohol. In the author’s case it’s about spending thousands of dollars on adding to his already overwhelming collection of classical cds; almost anything is an addiction if you can’t stop the behaviour at will and this lovely book offers much pause for thought.

So there we have it. You’ve had a whistle stop tour of the last year and are now more or less up to date. We all know I can write on forever, so I’m calling a halt while you’re still (hopefully) awake. I just want to add this: what I’m learning on this journey, which started with a diagnosis of lymphoma in 2012 and is currently hovering around the AFib/9-year mark, is that all roads begin with learning compassion, and starting with ourselves is by far the hardest part. It is also incredibly rewarding. Making progress in tiny increments expands into massive changes that are truly life-affirming.

Wishing you much happiness and love in your journey towards good health,

Mxx

101. All you Need is Lub

Yep, truly, it’s not a typo or auto-correct gone rogue. Bear with me on this one beautiful people, and also blame my OH if you feel like it :-).

If you are familiar with the previous posts, you will see that this blog has sequed from being lymphoma-related to heart-related – through no deliberate action on my part, I can assure you. However, the bumpy and irregular path of atrial fibrillation continues and it appears to be coming to a head as it seems I will need to have an ablation to stand any chance of regaining somel evel of fitness. I think I have tried just about everything possible to make it bump back into a regular rhythm myself, but up until 65 days ago the one remaining area needing attention was my relationship with Miss Chardonnay.

Funnily enough (sarcastic interjection here) an ad for One Year No Beer (OYNB) came up on my Facebook feed, so I joined with the explicit intention of cutting my alcohol intake down to a big fat ZERO to give my heart a chance to recover from persistent atrial fibrillation. It’s been going on for a year and has impacted my life dramatically; I’m incredibly frustrated that I can’t set new fitness goals or even run at the moment because of it. A slow walk on level ground is my current limit. We all know that jumpy heart feeling after (quite) a few too many the night before, and I thought it was crazy to put myself through a fairly serious ablation procedure when maybe coming off the happy juice would do the trick. My appointment with the consultant is 9th August so in preparation for that I had an echocardiogram last week with a delightful operative who looked about 11, but in terms of her wisdom and knowledge was as old as the hills. She could see I was interested so turned the screen towards me and explained everything she was doing and measuring. Basically this was to establish whether my heart is mechanically sound enough for the ablation, but it was her simple description that made the cogs turn and a lot of unconnected dots form a pattern in my mind. She said, “Your heart should go lub-dub, lub-dub, whereas yours is going dub-dub, dub-dub-dub, dub, dub-dub. So basically you’ve lost the lub.” There’s a primary school somewhere that badly needs her level of fun and clarity.

I didn’t really think much more about it until this morning when I thought to tell Stephen. My heart has been decidedly calmer in recent days (yay!) to the point where I couldn’t tell if it has seen the light and joined the regular side (it hasn’t), so I asked him to press his shell-like to my heaving chest and listen to it. He was really puzzled by the rhythm so I told him what the radiologist said. To which he immediately replied, “So really, all you need is lub.” Yes, I know. I have to live with this. But we fell about laughing, which apart from provoking a load more song titles, especially, ‘Where is the Lub’? reminded me of the OYNB email from Day 63 asking us what has made us laugh since we’ve been sober. This. This made me laugh my head off. But it’s deeper than that. I would suggest, from the huge growth in the Mind, Body, Spirit market of self-help books in recent times that most of us are battling low self-esteem and the ability to truly love ourselves for the precious beings that we are. It isn’t easy to change ingrained habits, especially when they are facilitated by others. But what I know is that the more compassion and love we have for ourselves, the easier this journey will be. So there you go. I’m finding the love, and I hope you all are too. I just need to find the lub.

Onwards and upwards dear people

🙏🙏💜🙏🙏

100. Ta-dah!

Can you hear the rumble of that drum roll as I wheel out…. blog #100? Who’d have thought it, huh? It has to be said that at the current rate it will take me several centuries to get to #200, but let’s not get too far ahead of ourselves. I was just re-reading #99 and realised that I couldn’t use the same excuse of not knowing what to say as a reason for not writing since August, so I’m going to neatly skim over that small detail and ask you to instead rejoice with me that we made it to 2021.

I was just remarking to someone that this last year, during which learning to live with the Coronavirus situation has almost become a full time job for everyone, has been very much like the experience of going through chemo; someone once asked me how I coped with it all, and I remember replying that when you wake up every morning, it’s there and you have to deal with it. There’s no choice. You can’t say, ‘Well thanks, but I’m not playing today.’ And it’s like that now, isn’t it? We have to pitch up at this life-thing every day and just keep on keeping on, each of us doing the best we can. But you know what cheers me along the way? Again, there’s a similarity with chemo in that the darkest humour comes out of the darkest times, and you have to admit, there are some cracking jokes doing the rounds, and some very bright minds helping to alleviate the threat of the shadows.

You will know from the blog that I’m definitely not the kind of person who insists the sky is blue when it isn’t and the birds are chirping prettily when they’re not. I know personally if I try to pretend everything is okay when it’s not I just fall apart that bit faster, but I have to admit there are some silver linings to this gigantic and very unwanted cloud.

In no particular order, I like it that people are (on the whole) a lot more gracious and patient with each other. Now that we’ve got used to the constraints of living with the virus, most of us are taking more time to get ordinary tasks done – like shopping. We have had to slow down and prioritise, and when we do venture out I love the way that people stand back to let each other through a door or along a path because of social distancing rules, and very often there’s even a ‘thank you’, which was almost unheard of when we were busily concentrating on living our lives at top speed. There’s an unspoken communication in that small act that acknowledges we really are all in this together, and gratitude for the interactions we do have since the life that we took for granted disappeared in front of our eyes. There’s a particular game I’ve come to love playing. Knowing that masks cover our mouths and thus hide our smiles, I make an extra special effort to smile with my eyes. Have you tried it? I remember one of my sons taking a dislike to one of his teachers because she didn’t smile with her eyes. Out of the mouths of babes…. And when you can actually do it, and BEAM that smile at someone, something registers in the other person too. I like to think of it as a superpower and that we can use it to beam a bit of light and happiness into someone else’s life.

What I also love is the fact that I can participate in Zoom yoga with Swamiji, and boy has that been beneficial; gratitude definitely oozes from every pore at 6.30 am on Mondays and Fridays :-D

And you know the whole working from home thing? Somehow I think the call centre staff for credit card companies/banks etc who now take calls in their kitchen are a tiny bit more helpful than when they were functioning as a pack, working in a massive, buzzing office with people watching over their every move. They seem more relaxed, so I’m more relaxed, and we seem to get a better result.

Before this turns into a much bigger list, and because people have been asking, I wanted to give an update on the AFib situation. I’m bored as hell about this ongoing issue, but there are some useful improvements. I cancelled my December appointment to decide whether I wanted cardio version or ablation (neither), and I’m taking the drugs (unwillingly), and consequently am feeling well enough to take part in some Nordic walks – once I can cope with hills I’ll think about running again – but I’m also Zooming (another plus!) a talented homoeopath who is helping me to work through past issues to unravel exactly what is making my heart kick off like this. But that’s for another blog!

So before this goes on for a lot longer, I want to wish you the very best of whatever 2021 can offer.

Your hope is my hope.

Stay safe and well,

Margaret xx

99. I Saw Three Ships…

I can’t believe that the next blog will be number 100, which at the rate I’m (not) churning them out will be around next Christmas. I usually offer excuses like, ‘there’s been a lot going on,’ but this time it’s more than that – I just haven’t been very sure what to say. And actually there has in fact been a lot going on. Whilst for a lot of people the day job disappeared completely for several months, mine intensified because during lockdown people have been reading a lot more so we have been much busier on the order front. And for that I am very grateful. We have also been building up the social media presence of The Wessex Astrologer which is a huge amount of fun, but very time-consuming. In fact – quick advert break – if you’d like to see a beautifully produced, relaxing video by Darrelyn Gunzburg about coping with lockdown during Coronavirus, grab a coffee and head over to the Wessex Astrologer Youtube channel here. It’s stunning, even though I say it myself. It’s also available with Spanish and Italian subtitles (that was a steep learning curve!).

Somehow though, I haven’t been able to get my head around the ongoing situation enough to write anything about it and I didn’t feel I could ignore it completely. My overwhelming feeling is one of being thrust onto the set of a post apocalyptic sci-fi film that I don’t recall auditioning for, and there doesn’t appear to be a way out. Nobody to tap on the shoulder and ask where the exit is. Not that I’m the sort of person to tap anyone on the shoulder, but you get my drift. In fact in the current – and now all too familiar – environment of social distancing it would be an unheard of intrusion into somebody else’s personal space. That whole mindset is going to take some crawling back from, isn’t it? Being a very touchy, huggy kind of person myself I find that side of it very hard. Even once we were allowed to actually meet a set number of relatives from a single household at an outside location, it felt wrong to be keeping the fruit of my loins at a distance. I wanted to hold them and ruffle their hair (don’t care how old they are now!) and inhale their comforting presence to reassure myself they really were okay. Might have broken the odd rule there.

Talking of being okay, I want to extend my heartfelt thanks to all the people who have emailed the blog asking whether I’m still alive. I very much am, and it touches me deeply that you care enough to check up on me. Lockdown sent me into shielding of course, as my increasingly complex and very boring medical history is enough to keep me away from the outside world for a very long time. I’m fortunate in that we work from home and have a beautiful garden, so life didn’t change an awful lot for us. As per the picture below, we also have some interesting scenery to keep us entertained with a whole new game called ‘Identify the cruise ship’. I’ve downloaded the Vessel Finder app to my phone so I can track the cruise ships as they come and go and play around in the Channel. And they do play. The app produces a black line tracking their journey when the ship is moving, and those captains are making some very interesting shapes that I can’t discuss on a family blog. Wonder if they are doing it deliberately, to keep us all amused. How public-spirited of them! At one point every ship moored in the bay was one we had cruised on, and in fact when it was pointing the right way we could even see the cabin we had stayed in on the Arcadia. That doesn’t even bear thinking about – it was in 2010, before I was ill and before we moved to Swanage. A whole lifetime has passed by since then…

Getting back to lockdown – Stephen does nearly all the shopping as I find it very easy to be a recluse, but my presence on the ‘Vulnerable’ list has also enabled us to get those lesser-spotted and much lusted-after delivery slots with our favourite supermarket.

My 6-monthly check-up earlier this month with Joe went ahead as planned, only by phone. All my blood results are fine and I am still, thankfully, very much in remission – and plan on staying that way. I’ve had no treatment on that front since the stem cell transplant in 2013 – it’s just the heart scenario which is so frustrating, so consequently took up a chunk of the phone call with Joe. Although it’s not his speciality department he’s equally good at smoothing the waters anywhere it’s required, and encouraging me to take the  most appropriate route even when I don’t want to. He didn’t get me through all this only to lose me to heart-related issues, and for that I’m deeply grateful.

Just after my last blog my heart decided to launch itself into more or less permanent AFib for absolutely no reason I can fathom. After weeks and weeks and weeks of trying to sort it out with meditation, careful diet, exercises to strengthen the vagus nerve, no coffee, no alcohol, no life, yoga, Jin Shin Jyutsu, cold water swimming, homoeopathy, hawthorn tincture, ashwaghanda and Bach remedies, I felt so rotten I actually went to see my GP. You will understand it wasn’t an easy decision but I finally realised that it was more important to avoid a stroke/heart attack and hang around to annoy people for a lot longer than it was to insist on doing it my way, when doing it my way clearly wasn’t working.

I was also comforted by the knowledge that my GP, who looks about 11 years old, TBH, totally ‘gets’ me. She admitted she doesn’t like taking medication either so I trust her not to swamp me with drugs. For any AFib people out there, when I went to see her I was in persistent atrial fibrillation with tachycardia at 135 bpm. It was exhausting and even a walk around the garden made me breathless. I was on 50mg of Atenolol a day which is supposed to keep the heart regular – mine’s clearly having none of it – so she wanted to put that up to 100mg. We negotiated and ended up at 75mg plus 20 mg daily of the blood thinner Rivaroxaban, and I must say I am feeling a huge amount better. Nearly human in fact, although going for a run is still some way off – Nordic walking possibly a bit closer. She said there is more of a chance of the heart resetting itself with a lower heart rate, and it does seem to slowly be coming into line. I was really worried that the drugs would make me feel slow and sleepy but what they’ve done is taken the edge off the panic that comes with such a high heart rate, so in effect, calming me down. I’m also receiving some beautiful healing from a friend, which I know is helping me to address some deeper issues and blockages.

However, I’m not completely off the hook as I’ve got an appointment at the hospital in December to discuss other treatments, like cardioversion, where an electric shock is applied to the heart to give it a jolt – hopefully in the right direction – or an ablation, which is the ‘plunging a white-hot wire into the heart’ scenario that I’ve discussed before. Not terribly eager to go down that route, for several reasons, one of which being that it isn’t the heart that’s the problem, it’s the wiring and as far as I know that is controlled by the vagus nerve – which in my case seems to be off on a long holiday as there’s not a lot of controlling going on. So I have a few months to think about this and with any luck by the time the appointment comes my heart will have settled down of its own accord. I’m really hoping so.

With all of this going on it might seem that I’ve departed somewhat from the original purpose of setting up my blog, which was to communicate how it feels to go through the treatment for Mantle Cell Lymphoma and to connect with others on the same journey. Life has moved on for me, yes, but I’m keeping the blog as it is because I am still contacted on a regular basis by people who have just received a diagnosis or are in treatment, and of course I offer support, friendship and a much-needed exchange of black humour where I can. To them I want to say this: I bow humbly at the altar of your courage, I laugh at your stories of humour in the face of adversity, and my heart reaches out to yours as you face the journey you never bought a ticket for. You’re all amazing and I love you.

Your hope is my hope. Be well.

Margaret

 

 

98. Uncharted Waters

I thought writing about cancer was hard enough, but pinning my thoughts down regarding Coronavirus is a way bigger challenge. You know by now that my default setting in a difficult situation is to resort to very dark humour. It worked incredibly well on the cancer ward, but this is a whole different ball game – should one be allowed, which of course it isn’t.

I’m glad I waited before finally writing, because as the reality of lockdown starts to bite I have a multitude of feelings coming to the surface, and the strongest one hit me as I took my one permissible form of exercise today, running along the beach in beautiful Swanage.

There were a few other runners about, and we crossed over the road from each other to avoid passing too closely, exchanging cheery waves and a thumps-up as we did so. But a huge wave of sadness overcame me amidst the sunshine and the waves and cheeriness as I realised that in addition to concern for loved ones, and for those on the front line of health care, and money worries, we are losing the very thing that defines us – the way of life we have carefully constructed through the years that contains our habits, our likes and dislikes, our working environment and most of all, our relationships. It’s our safe place, or at least it was, and even though it might not have been perfect, or just the way we wanted it to be, it was the barrier between us and the outside world, our protection.

Many (many) years ago during my counselling course there came a lesson in which we were encouraged to think in terms of,  ‘who am I if I’m not… sick, successful, tired, a mum, a dad, rich, poor, in a gang…?’ Fill in the gap with the word that best defines you in this situation and see what comes up when your biggest ‘label’ is taken away. What’s left behind if that prop, that crucial part of your life is removed? If you aren’t that, who are you? Are you usually the life and soul of the pub? No pub to escape to now, is there? Life and soul of the office? No office either. Nowhere to be the ‘me’ that’s on show in these situations, so what is there to fill the gap? Where do we go with this? Do we sob into our wine/G&T/beer/diet coke that we bought in bulk earlier in the week and pretend it’s not happening? Finally get round to the maintenance, cleaning or DIY that’s been building up? This is a deeply personal and very powerful journey for each of us as we are forced to face up to who we really are, especially when what defines us the most is forcibly removed. It’s relevant to people living alone who rely on their activities outside the home for some kind of a social life. It’s relevant to partners and families who have historically used an active engagement in life outside of the home to preserve the status quo, keeping time and distance between each other to ensure sanity. And what about the financial implications for millions of people as businesses are forced to close? What now?

In true Buddhist fashion, sometime around the point I got back to the car after my run, eyes streaming, I realised I was trying to embrace all the pain and ramifications of this devastating virus in one go. I realised that the only way round this is through it. We are in uncharted waters with no navigation aids, and we are facing extremely difficult times. Buddhism is often seen as being negative and full of suffering, but it’s in recognising that we are suffering and not trying to fight it that there is some relief. Just the act of breathing in, feeling the air pass gently up into your nostrils, and breathing out, feeling the air moving back out through them, is immensely calming. We will come through this – of that there is no doubt, because time ticks on, second by second – but we will emerge blinking and changed into a different world. Let us vow to make it a better world, as we learn through this experience just how important it is to remain deeply connected to each other even in our isolation.

Feel the love. Stay safe.

With much love

Margaret  xx

97. Heart to Heart

I’ve had the title of this blog rocketing around in my head for ages, nay months (ahem!) and the strange thing is that, regardless of the constantly evolving essence of this thing called Life, it continues to be appropriate on a daily basis and on many different levels.

On the purely physical level I’d been trying to find ways to resolve the increasingly frequent episodes of atrial fibrillation (see Blog #95). But of course that led almost immediately to all the other levels as nothing is unconnected, is it? A feeling of being very tired-around-the-edges at having to deal with all this stuff on my own had been building up, as had the realisation that instead of trying to avoid a follow-up appointment with the extremely aggressive ‘my way (drugs) or the highway (certain stroke or heart attack)’ cardiologist I had ended up with after my heart kicked off at my appointment with Joe, I could be a bit constructive about it and try to transfer myself onto the team led by the very wonderful Dr Rosie Swallow. I saw this gift-from-heaven-personified after I finished chemo and was referred into her care due to my bad reactions to the Bisoprolol I’d been given in hospital to try to counteract the Afib and high blood pressure. I only saw her the once, but her truly radical approach was that I could try stopping the tablets; my kind of doctor! She would recall me in two years and if I was feeling fine I could cancel the appointment. Naturally I did both, and survived the ensuing five years in fine form until fairly recently. So I called the hospital and to my astonishment managed to transfer to her team from Dr Aggressive with very little effort. I think the receptionist was deeply worried that I would have to wait three months to see Rosie, but in my book that gave me more time to try and sort this out for myself. I sort of failed, but that’s fine. Failing at something means that at least we are trying.

When it finally arrived, my appointment with her was extremely positive, starting as it did with a warm welcome as if we were old friends from way back. That’s a tick for Team Rosie’s bedside manner. I’ve been doing a lot of thinking of late, mostly around the fact that the high BP is definitely still a problem despite no coffee, cold water swimming, regular beetroot juice, serrapeptase, meditation, visualisation and a whole host of other measures that take a whole chunk out of one’s already busy day, which causes even more stress. In all honesty I had run out of options and was finding it all a bit of a struggle. And watching a close friend suffer a massive stroke delivered the shove I needed to get this sorted out. I came to the conclusion that I didn’t go through all the chemotherapy and stem cell transplant **** to peg out with a heart-related issue, so as it turns out I was quite happy to relax into Rosie’s excellent care. We mutually agreed that I needed to take some form of medication as long-term high blood pressure is very hard on the heart, especially when combined with the AFib episodes. She already knew that Bisoprolol made me depressed and dizzy so when I mentioned that I’d taken Atenolol many years ago with good results – no side effects and I actually felt better – she agreed to prescribe it as it also helps the AFib. Another tick for Team Rosie. After booking me in for an echocardiogram to check how my heart is bearing up, and organising a 24-hour blood pressure monitor she discharged me, saying I can be returned to GP care unless the need arises and I want to see her again. If it does all I have to do is call. Now that’s what I call amazing healthcare.

I’d forgotten just how much fun hospital visits can be. They formed the backbone of my blogs when I was in treatment as they are an endless opportunity for people-watching and therefore a good source for blog-writing. My ECG appointment rolled around, and during a very speedy and efficient 10 minute session I had a fascinating discussion with the two clinicians; after smearing freezing cold gel over my chest Op.1 performed the ultrasound while reading off the resulting statistics to Op.2 who entered them onto her computer. Back in the day, one person did all of it – hence the 40 minute appointments and not much opportunity for talking – so not only was this appointment super-speedy, it turned out that I also had two very interesting people to talk to. Op.1 asked whether it was just the high BP that brought me for the scan, which launched us into a discussion about AFib and stress (which is known to cause it) and meditation (which is known to help it), which she has been advised to try in order to reduce her own stress. Op.2 was excitedly sharing the information that the children in her daughter’s Reception class are teaching themselves sign language so they can communicate with a class member who struggles with verbal communication. We mutually came to the conclusion that kindness and compassion come naturally to Small People and that it might do a lot of good if Big People followed their example and practised it a bit more of it themselves.

Kindness and compassion are important in our dealings with the outside world, but they are also crucial to our own mental and emotional well-being. In my meditations I have been working on releasing blocked emotions and opening my heart (for obvious reasons); for any astrologers reading this, my Moon is in Virgo, a naturally critical and analytical sign which in my case leads to a lot of self-reflection, the results of which can often be quite destructive – we are definitely our own harshest critics. Since my experience of lymphoma I’ve been deeply interested in the reasons why some people become ill and others don’t, and obviously why I became ill in the first place. Blocked or negative emotions that have become ingrained lead to a kind of tunnel vision in which we can never exceed our own low expectations of either ourselves or the wider world, despite endless positive affirmations to the contrary.

In my experience, endlessly repeating “I am happy and healthy” like some magical mantra seemed to cause a division between my head and my heart. Like a Monty Python sketch it turned into “Yes you are!” (head), followed by “No you’re not!”(heart). Happy, yes, healthy, no. I wanted to understand this mismatch, and to discover what I was doing wrong as it apparently worked for other people. Which neatly brings me to Dr. Joe Dispenza. I’ve heard his name mentioned a lot in recent years, but somewhat arrogantly dismissed him as another MBS author who thought he could heal the world. This is the Virgo Moon in action again folks! However, one of my favourite customers phoned a few weeks back and literally sounded on top of the world – not bad for an 83 year-old. At a friend’s suggestion she had been using his meditation, ‘Blessing the Energy Centers’, and it had seriously changed her life. She said she felt that something had freed up inside and that she felt able to move forwards with an open heart. Was I inspired to try it? Hell, yes!

About three minutes after the call I’d downloaded Blessing of the Energy Centres to my phone and couldn’t wait to get going. I’m sure a lot of you know of his work, so I’m not going to say much more here. What I do want to say is that since I’ve been doing this meditation (and The Generous Present Moment) I also feel that old blockages are releasing, and I’m more joyous on a daily basis without any particular effort. I’m viewing the world as if through a different lens: one that naturally searches out the beauty and love that surrounds us – whether that is the spectacular autumn foliage, or the sunlight shining on the sea, or the smile of a passer-by – and reaffirms our connection to each other and to the universal energy that sustains us. And the side effect of all this is my heart feels lighter and more open than ever before.

Dr Joe has released many, many podcasts of his workshops in which he demonstrates how we can move from being entrenched in the limited density of matter to flying free in the energy field where we have unlimited potential. That was a huge leap for me and even writing it looks a touch weird, but if you put in the work of serious meditation, it works – and now I can’t wait to do the meditation each day. As Doctor Seuss would said, “Try it, try it, you will see.” Only this is way more exciting than Green Eggs and Ham and I thought that was pretty amazing.

I want to leave you with a picture I took on a recent Nordic Walk. I called it Spotlights from Heaven because it made me think of beams of light shining through our inner darkness. May it cheer your way as it did mine.

Wishing you good health and happiness

Mxx

 

96. Feel the Fear… yep, that one

I know, I know, I know – it’s been a ridiculously long time since my last blog and the whole thing about the Atrial Fibrillation creeping back again. So here we go. This is a blog of many hues.

Firstly, an update on the AF situation.

Coffee definitely brings on an episode, so that’s out the window. Even one, occasionally.

Being extra-tired – ditto. That one’s not so easy to manage with all the wee birdies (and bloody great seagulls) around here. This is how it goes: a loudmouthed insomniac seagull starts a low, noisy territorial fly-by that takes in frequent passes of our bedroom window shortly before dawn. Backwards and forwards, again and again. This wakes up the insanely screechy fledgling seagull currently trying to escape from his snuggly nest on the roof several houses down – I’m praying for those feathers to grow, I can tell you – which wakes up the flock of thirty-odd sparrows that seem to sleep in the bushes RIGHT outside our bedroom window. And so it goes on. By the time the cacophony has calmed down and they’ve got breakfast sorted it’s almost too close to getting-up time anyway to try getting back to sleep. Yaaawwn. But dawn is creeping forwards (sob) so I live in hope of more sleep.

Stress definitely brings on an episode. If more than a couple of busy, adrenaline-fuelled days filled with busy-ness pass without doing some deep relaxation I can feel the old heart starting to thump that bit harder. I use this Yoga Nidra, which is incredibly powerful.

And now a bit of good news. As you know, I’m trying to sort the AF out without resorting to drugs that have horrible side effects (I fall over) or having the misbehaving cells of my heart burnt away with a white-hot electrode (not at all happy about that bit). So imagine how overjoyed I was to hear of an NHS doctor who has managed to heal himself of AF. I might be the last one to the party on this as Dr Rupy Aujla is all over the television as well as having two books out, doing masses of cooking himself, oh, and doing a sterling job in the NHS as a GP. Thank you Darrelyn Gunzburg for the heads-up on that. It is so comforting – nay, amazing – to find someone inside the NHS who feels the same way as I do about finding natural solutions, who has cured his own AF, and even better, is setting about educating the medical profession about the importance of real food as the path to good health. A huge hurrah to that!  The link to his books is here if you’re interested.

With all the focus on the AF, and seeing how long I can go without an episode, and cutting out coffee and squeezing in Yoga Nodra, life seems to have been a bit intense recently. Also, summer has been busy in sunny Swanage, and in the last few months we have packed a lot in, with little time for the precious relaxation I apparently need to stay well. So when Steven Malone of H2OAdventures called asking me if I’d like some kayaking classes to help him progress to his British Canoeing Sea Kayak Coach Award, I was on it like a thirsty dog to a bowl of water. A chance to get out on the water, in beautiful Swanage Bay? Yes per-lease! Okay, so my day is already a tad busy with the day-job, dancing classes once a week, gig rowing whenever we can actually get down there, Nordic Walking, spending time with visiting relatives, updating the 1970s interior of our home, keeping the garden at bay and trying to swim in the sea every day to help lower my blood pressure. But ever one to stretch the time available by starting the day earlier, I met Steven down at Swanage Boat Park for my first session on Tuesday at 8.00. Fortunately I’m at home with wading straight into the sea now, as that’s what I had to do to launch the kayak, after learning how to set it up so it’s actually comfortable and safe. What I didn’t expect was what turned out to be quite a tough work out at that time in the morning – mentally and physically. I guess it’s always the same with a new activity: there’s no muscle memory to help you and being taken out of my usual comfort zone – although I did a couple of taster sessions with Steven last summer – was certainly mentally demanding too. Wow. I was tired after that one, but still managed to do a lot of typesetting for the next Wessex title. Yay.

The sessions are progressive, so this morning with a moderately strong wind making me work that bit harder, Steven followed up on the skills I learnt on Tuesday, but pushed me further again, working towards the point where I can eventually paddle out to Old Harry Rocks, at the edge of the Bay. Which TBH feels quite some way away ATM. Being on the water is beautiful, and I’m enjoying it more as my confidence increases, but what has really shocked me is how cautious I am. Paddling in a straight-ish line is fun and relatively easy but can obviously be massively improved upon. Learning to turn on the spot was also fun if exhausting. Paddling sideways was pretty much beyond me at first but fortunately I have a patient coach :-) A coach who took videos for me to watch back to see just how tentative I am. FFS woman, stop tickling the water and get on with it! (My comments not his.) Note the bored fisherman in the background.

I’m fully aware that to be safe on the water I need to be able to cope with capsizing (not looking forward to that At All), and no, I didn’t do that today, but one of the skills I need to learn is how to avert said crisis should it seem likely. And I don’t mean, ‘Oh look there’s a bit of a wave coming, I should get ready’. No. Practising means (deliberately) tipping the kayak as far as possible over onto one side to the point where it seems – from my perspective – very likely it’s going only one way. And at that exact moment executing the correct move to save myself; and then doing it again and again and again until it becomes muscle memory so it would happen on reflex should the need arise. And that’s where the fear kicked in. It really shouldn’t be a problem. I’m a strong swimmer, I love the sea, we were practising in shallow waters, I had somebody right next to me to rescue me should it all go horribly wrong. But still, this huge lump of fear rose up from my stomach and practically reduced me to tears at the thought of being trapped upside down in the kayak. Okay it did.

Steven was really patient and I did practise over and over again, but as we paddled back to the boat park my thoughts returned to something I’ve often discussed on the blog; the way that encountering the raw power of the elements can reduce us to our smallest and most humble selves. Whether it is to tears at the beauty, the sound, the glorious scent of nature, or fear in the presence of something so much more powerful than ourselves; today, for me, it was almost the stuff of nightmares, but then I remembered that in nature we get the chance to strengthen our resolve and experience an outward expression of our innermost fears. And that the internal battles we all face, like lack of confidence, fear of asserting ourselves, all those situations where we wish we’d been strong – out here, on a choppy sea, we get the chance to rehearse being strong. Over and over and over again. Until we are.

With much love and wishes for your good health

Mxxxx

 

 

95. A Sobering Thought

This one’s been a long time coming, and I’ve been thinking hard about whether to open up about another medical facet of my life that’s been a problem of late, or even to start a whole new blog on the subject. I guess it makes a pleasant change from cancer, although certainly the resilience I gathered from that particular experience is helping me with this one. Sort of.

If you read any of the chemo blogs back in 2013 you would have seen that I was struggling with atrial fibrillation (hereafter AF) in the period leading up to diagnosis and certainly during treatment. Aside from the general hilarity (from me) and panic (from the nurses when their observation equipment went off the scale), it is actually scary and debilitating in the extreme and ultimately very depressing as, never knowing when an episode is going to manifest, it’s impossible to plan activities with any degree of certainty. AF happens when there is an interruption in the electrical impulses going to the heart causing it to beat irregularly (arrhythmia) or extra fast (tachycardia). This can last for a few seconds, minutes or hours. It can also last days, as with me, and for some poor souls it can be almost permanent. I don’t want to even think how they are managing to live a normal life.

This time six years ago I was about to go through a stem cell transplant, which had a high chance of curing the lymphoma and also a reasonable risk of killing me if the new cells didn’t engraft. Thankfully they did – communal sigh of relief on the ward – and I survived, and a massive and very unexpected benefit of going through that whole shooting match was that the AF completely cleared up. Yay! I was a very happy if very underweight bunny at that point. And now I’m normal size and very healthy, apart from the annoying fact that the AF has crept back and has reached a deafening volume where it needs to be dealt with, as I lose a couple of days of normal life each time it happens, and it’s now coming every couple of weeks. Aaaargh.

Whilst AF in itself won’t kill anyone, it is deeply unpleasant and the main problem is that the chambers in the heart contract out of rhythm with each other which can lead to clots developing, which in turn can cause strokes or heart attacks. So obviously it needs sorting out. The theories behind why it happens are many and varied, and much like in my quest to understand lymphoma, I am leaving no stone unturned in my efforts to sort this out for myself. The medical options include drugs I would prefer not to take as well as ablation, which involves inserting a tiny wire into the heart to burn or freeze the parts that are beating irregularly. That seems a bit extreme. Aren’t there more natural solutions? Possibly, and discovering one or several that work is my Holy Grail.

There are obvious and well researched causes of over-stimulation to one’s nervous system that include caffeine, alcohol, stress, and hypertension, which do apply to me, as well as a load that don’t – prescription drugs, diabetes – the list goes on. There is also another fascinating and much more subtle level to this (which doesn’t pop up on the regular websites) involving vagal tone. The vagus nerve comes out of the base of the neck and is massively important in the general running of Operation Human Body, especially considering not a lot of people seem to know about it. I’m not going much deeper here because I’d like to still have a few readers left at the end of the blog, but suffice to say it is deeply involved in the sympathetic and parasympathetic responses in the body – the way we deal with stress (ooh yes, that biggie) and so other aspects of life in general that you seriously would not believe it.

So in amongst all this plethora of facts, I’m working my way through anything that can help. Giving up coffee and wine, obviously. Waaaaaaait. Coffee, yes. Actually I managed that with very few tears (or headaches) but wine. Really? How about our beautiful sunny Chardonnay bench that we retreat to at the end of a hard day’s work. Or gardening. Or decorating. Or because it was a difficult day, or a celebration, or a Friday. Yep. It took an extremely bad episode of AF to make me see that this had to go too. I had been doing everything I could to sort out the vagus nerve as a possible cause, including meditation and yoga nidra every day, breathing exercises involving a longer ‘out’ breath, osteopathy… camomile tea, hawthorn drops, homoeopathy, visualisation, literally everything, and then this extra bad bout felt like the Universe smacked me over the head really hard and said ‘IF YOU WON’T LISTEN TO ME I’M GOING TO MAKE YOU SO ILL YOU WILL HAVE NO CHOICE. GIVE UP THE WINE.’

So I did, and I wish I could say it’s solved the problem. It has, sort of, in that I went two weeks with no coffee or wine and was rejoicing at how well I was feeling, then woke up in the early hours with that familiar thud. Disheartened doesn’t even begin to touch it, but the episode was thankfully over in literally a few hours which was a marked improvement. My disappointment was such, though, that as that weekend coincided with us being in beautiful Swanage for a year I sulkily decided to let rip and have a few glasses of wine to celebrate, because abstaining hadn’t stopped the AF. Yes, we celebrated, but then I suffered two days later with another crushingly depressing episode of AF.

So that’s where I was at last weekend, and this time I’m really fed up enough to go the whole hog for as long as it takes to crack it. I want to be able to dance, Nordic walk, go sea rowing, run, swim, and book trips with friends without having to cancel because I’m ill. How can I live life with a post-cancer sense of exhuberation when I’m floored every few weeks with a jumpy heart? So there will no wine, coffee, or stimulants of any kind and every day is filled with calm-me-down meditations and the lovely yoga nidra relaxation, vats of hibiscus tea, camomile tea, cups of organic chicory plus other vits and herbs that are good for the heart…. which does actually make me realise how hyped up I am a lot of the time. It’s not surprising my body has had to shout very loud to make me listen. Maybe, just maybe, I’m finally paying attention.

And here’s a calming picture of our Buddha statue by our pond-in-progress to send you on your way.

Wishing you all good health and no thumpy hearts.

Margaret xx

 

 

 

 

94. Talking of Death

The totally brilliant and unexpected gift that came from having cancer is that it’s given me a completely new perspective on life – and it continues to open up whole areas of no-holds-barred conversation that other people probably wouldn’t even think of having. It’s also awakened an exceedingly dark sense of humour, but if you’re a regular reader of the blog you’ll have gathered that by now.

Here’s a case in point. In recent weeks we’ve been playing around with ideas for our new garden. New to us, that is. There are actually a load of plants and bulbs already well established here, thank you very much, but delightful as they are, we can’t resist trying to squeeze in the odd plant here and there, just to make it a bit more ours. We’re also digging out space for a wildlife pond – yay! We’ve been happily browsing online and through catalogues, amassing a huge wish list – most of which we definitely don’t have room for – and learning an awful lot in the process. This small fact had never registered with me before (and yes, I have had a garden before), but some plants clearly take a lot longer to get going than others. Stephen was finding plants like the beautiful wedding cake tree (see pic below), which takes literally years to mature, while I was getting excited about a very aggressive and highly scented honeysuckle that will look and smell amazing in about 3 months time. He’d love to get some bulbs for next year, while I’m all for some primulas I can whack in a pot now to pretty up the space around my Buddha statue.

After several days of this it became clear we had different agendas. During a joint browse online he was gently teasing me for my lack of patience, and for wanting everything to flower now, rather than wait a year or so for the plant to mature or the bulbs to settle in. I was pretty much renowned as a kid for wanting everything now, TBH, but it has recently taken on whole new meaning. Yes, I’m happily in remission (for which I am truly grateful on a daily basis), but having faced the real possibility of death, there is a growing and very fundamental need in me to live every second with awareness; this moment now, this moment now. Clearly my mindfulness practice is beginning to pay off – and I said as much to Stephen – but more than that, it’s that I want to experience the beauty of these plants sooner rather than later, because I don’t know how l long I have left. None of us do. I don’t mean this in a maudlin sense, in fact it’s quite the opposite. It’s about rejoicing in the things I, personally, can see, smell, hear, touch and taste at this moment in time, rather than living for what might be at some point in the future. Obviously there is a need to plant for future generations, and for some that may be more important, and it’s definitely a noble cause, but it’s not the point just now. In the moment before I said all this to Stephen, I could suddenly see everything so clearly, and bringing it out into the light felt so good and so honest. Not your average conversation then. Many thanks to the lovely Judy Hall for encouraging me to share it on here.

This was followed by another slightly unusual conversation, prompted by articles on the recent deaths from cancer of some high profile people in the media. All of them wanted to make it as easy and painless as possible for their partner to sort out their affairs when they had passed over, and it occurred to me that just about everything to do with the mechanics of my life is in my head, or written in really weird places that only I know about. So I’m creating a little book called ‘All About Me’ so that whenever I shuffle off this mortal coil there will be an easy way for the person left behind to sort out my affairs. In a bizarre way I’m looking forward to finding the right kind of notebook and presenting it in a fun way rather than just a boring list of websites, passwords and pin numbers – as that’s basically what our lives are reduced to when we’re gone, isn’t it? Is this morbid? Not in the least. It will be a big weight off my mind and also a rather good reference book for me in case I ever need it :-)

I want to leave you with some words from the lovely Thich Nhat Hanh, who has returned to Vietnam to live out his remaining days at the Tu Hiue Temple. Yes, more death, but not quite yet as apparently Thay is still very much alive. I absolutely loved this. In a recent interview with Eliza Barclay, Senior Monk Brother Phap Dung, relayed that Thay had instructed him thus:

“Please do not build a stupa (shrine) for me. Please do not put my ashes in a vase, lock me inside and limit who I am. I know this will be difficult for some of you.

If you must build a stupa though, please make sure that you put a sign on it that says, ‘I am not in here.’ In addition, you can also put another sign that says, ‘I am not out there either,’ and a third sign that says, ‘If I am anywhere, it is in your mindful breathing and in your peaceful steps.’

Isn’t that beautiful?

Wishing you good health

Margaret

 

Exciting news

Today is a really special day for me – I just heard that my novel, It Could Only Happen At Sea, has won a Red Ribbon Award in the Wishing Shelf Book Awards. You might be wondering what that means and why the hell I’m so excited. Well for me it was a giant leap into a new genre. My first book Under Cover of Darkness was all about the lymphoma experience, and being able to pour out my innermost feelings on this blog was absolutely a life saver for me at the time. I was pleased to have the first book out, but the writing bug has me well and truly in its grasp now; so for my first novel I wanted to try Women’s Fiction, AKA ‘chick lit’ which I hate but it does what it says on the tin. My absolute icons in this department are Jojo Moyes, Lindsey Kelk, Milly Johnson, so think fun novel that has a deeper subtext… So when I sent Caitlin and James off on a cruise around the Med I knew that apart from having them drink bucket loads of chardonnay and merlot (aw come on – they’re on holiday…) I could embrace some topics very close to my heart – emotional abuse (been there, done that) and the issues faced by a very dear friend in relation to his sexuality. It was an adventure for me just as much as it was for them, and it was also very cathartic – plus I really had no idea where it would end up. It was all a bit scary unleashing something like this on the world, but I did get some really nice reviews, and now winning this Red Ribbon Award is absolutely the icing on the cake. I had some beautiful comments:

‘The abusive relationship the character suffered is an important issue, cleverly disguised in this travel story.’

‘There’s plenty of comic moments interspersed with deeper, thoughtful dialogue between the two central characters. This is very much a character-led story. The cover is light and breezy too.’

‘This book sort of made me want to jump on a ship and enjoy the Med. A light, cheery read. Enjoyed it.’

‘There’s plenty of comic moments interspersed with deeper, thoughtful dialogue between the two central characters. This is very much a character-led story. The cover is light and breezy too.’

It feels very weird blowing my own trumpet, but this has really encouraged me to take up my pen again and go for the sequel the readers say they want. Oh yes indeedy, I’m back :-)

Wishing you all good health,

Margaretxx