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

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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…

No description available.

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

 

 

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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.

Beach

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

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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.

Image may contain: ocean, sky, cloud, outdoor, nature and water

Wishing you good health and happiness

Mxx

 

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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

 

 

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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

 

 

 

 

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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.

Image 1

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

 

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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

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93. Always Read the Label

I’ve written literally loads of blogs between 1st November (the last proper one you see up here) and today (31st January), but the trouble is they’ve all been in my head. Events seem to move so swiftly that we’re onto the next thing before I know it, and those precious thoughts have flown and I’m having another ‘Ooh look!’ moment in another direction, which is deeply ironic considering how mindfulness is such a big theme in my life. I suppose a positive take on that would be that at least I’m actually noticing that I’ve gone off track – but maybe I didn’t need to write about that stuff anyway. Whatever it was. But the whole thing got me thinking about why I started the blog, and why – exactly – I continue with it. Winding back the clock to January 2013, you would find me close to the beginning of this crazy journey – Blog #6 in fact – where I was trying to understand how to survive in the alien and terrifying place I had been thrown into. I opened with this quote from the Sufi poet Kabir:

The way of love is not

A subtle argument.

The door there is devastation.

Birds make great sky-circles of their freedom.

How do they learn it?

They fall, and falling,

They’re given wings.

Because what I was learning, aided and abetted by my dearest Swami Ambikananda, was that at the moment of my diagnosis I’d effectively been thrown off a cliff and was having to learn how to fly very, very quickly. For me, personally, that meant gathering as much information about the disease as possible, followed pretty rapidly by leaving no stone unturned in my quest to explore each and every avenue of nutritional and therapeutic support available.

That’s the way my mind works – get as deep and scary and awful as possible, throw it out in the light for a good bit of examination and discussion,  then you have the tools to fashion some kind of plan. For me, knowledge is power, and in a treatment regime where I was completely disempowered, that was vital. Six cycles of very aggressive chemo and a stem cell transplant focused my mind wonderfully, and as my poor body began to struggle with the chemical onslaught I became totally fixated on what I was putting into it, and how I could best help it to survive. Now, I appreciate that not everyone feels the same way; judging by a couple of reviews of my book, some readers found that a very odd approach, and a haematology consultant who was himself suffering from Mantle Cell Lymphoma thought I was completely nuts to even be considering that nutrition and supplements could play a part in my survival. Each to their own, I guess, but learning a lot more about where our food comes from has been a massive part of this journey, and it’s certainly given me a fair few soapboxes to drag out should the moment arise. And those moments do arise quite a lot, actually, which I realised is part of the reason I keep the blog going. That plus the lovely people who check up on me if I don’t post for a while. To them I say a big ‘thank you’ for caring, and yes, I’m fine :-)

Due to recent and ongoing conversations with friends/family/readers of the blog/people in the health food shop/our Nordic Walking family I’ve decided to drag those soapboxes out for a bit of an airing and stack them neatly together in one place. This blog is #93, and I can pretty much guarantee that at least 75% of my blogs have some kind of discussion about food/drugs/ways of staying or getting well in them, but it’s not a lot of use if that information is scattered all over the place when people ask me how I survived chemo, and how I live now. Which they do. Whenever I see the blog stats rocket I’m grateful that someone is reading the blog, but I’m also sad that it usually means they have just had a diagnosis and that I’ll soon be getting an email. But hopefully if this blog suddenly rockets, it will mean that people are reading because they’re interested in what they eat.

Let’s think about that for a moment.

Being interested in what you eat means more than liking the taste and wondering how many calories it has. Being interested in what you eat surely means having some idea where your food actually comes from and what processes it went through to get there. Here we go. 1st soapbox and it’s a nice big one. My forays into exploring exactly what I’m eating have led me down some very dark alleyways indeed, and I am shocked at the way we are manipulated by the food industry. And a massively ironic thought occurred to me when I couldn’t sleep about 5 a.m this morning (and yes – I know some of you are already up then. I wasn’t). When we get a prescription from the pharmacy, it has in prominent letters somewhere on that box ‘Read enclosed instruction leaflet before use.’ Hmm. So we’re happy to read a long list of ingredients we don’t understand, dosage (obviously) and the (probably) very long list of side effects, but do we actually pay the same attention to our food choices? I’m hypoglycaemic (as opposed to diabetic), which means I have to be extremely careful about eating sugar and sugar substitutes, and in conversation the other day somebody mentioned that I must have to read a lot of labels when I go shopping. Hell, yes! Am I the only one? If you want to enjoy a good bit of fiction at the same time as dreary food shopping compare the ingredients on the back with what the food is supposed to be according to the flashy label on the front. I loved a particular meme on Facebook which I shared the socks off because I totally agree with it:

For low sugar/low fat, read ‘chemical shit storm’

Because if the food companies who insist they have our best interests at heart are taking out the sugar and fat we’ve been brainwashed to think we should avoid, WHAT ARE THEY PUTTING IN INSTEAD? You’d think that a low/no sugar product would be of interest to me due to the blood sugar issue, but having no sugar doesn’t mean it’s not sweet or that it’s better for you. Nope. Substitute sweeteners are up to 25 times sweeter than sugar which explains why people using them as part of a diet are outrageously hungry about twenty minutes after eating/drinking such a product. So they need to eat something else, which will almost certainly have the same ingredients in it, then they get hungry again and the vicious circle is well and truly up and spinning, and they never lose weight. I’m not making this up. Enough people have talked to me about this that I know it’s the case, plus on the very odd occasion that I’ve unwittingly eaten something containing glucose fructose syrup/rice syrup/artificial sweeteners, I’ve had the same experience. And don’t even get me started on aspartame, which has been shown to be carcinogenic but is added to certain medication to make it more palatable. Oooh, and probably a bit hungry. And then when I tell said people this small fact they ask what they’re supposed to do, and I possibly somewhat harshly respond that it’s not rocket science. Same as I had to do all those years ago once I realised I had a sugar problem. Ditch the sugar, don’t use substitutes and re-educate your palette so you don’t need sweet stuff. Trust me, it will change your life and you’ll rediscover what your taste buds are for.

In the early blogs covering my visits to hospital, I relayed how the lovely Dot (who had to go on literally loads of courses on food management in a hospital environment) brought in every single breakfast option for me so we could read the labels to check the contents, and she was horrified at what she found. So she’d learnt that rice has to be scorching hot in order not to accumulate dangerous bacteria (yes, that’s both true and sensible), but she hadn’t been told that cancer patients should avoid sugar, and neither was she aware that every single option except the sachets of porridge contained sugar or a sweetener in some form. There was much tutting and head-shaking at that little discovery. Before I skip over to the next soapbox I just wanted to impart this little bit of wisdom for sufferers of cystitis (and yes I get asked about that too). We know that cranberry juice is good for getting rid of the bugs in the bladder that cause this horrible and extremely debilitating condition. However, those bugs thrive on sugar. And guess what the shelves are filled with in the average supermarket? Cranberry juice ‘drink’ which has which ingredient? Picture ROFL emoticon here. Yes, sugar. They are seriously joking. Likewise yoghurt is also very good to encourage a healthy gut, or to help return a compromised one to a better state. And by that I mean live, bio, organic, full fat yoghurt, because any other ingredient suggests it isn’t actually proper yoghurt, doesn’t it? I think it’s true to say that the food demonstrators in the supermarket aisle don’t make eye contact with me any more.

By the way, I’m really not making this stuff up. You need to read Karl Elliot-Gough’s book The Seven Deadly Whites to discover exactly what goes on in the food industry. It’s a scary and challenging read, but it’s also the sort of book you’ll be glad you read because it is a real eye-opener, and you won’t ever look at food the same way again. While you’re at it, you could also order a copy of Dr. Steven Gundry’s Plant Paradox, which also makes very informative reading.

I didn’t used to be this grumpy about food – honestly. Before I was ill I was interested, but quite a bit more relaxed about it, although I did get seriously cross when I tried to buy a ready meal (this was a loooong time ago!) after a trip to the gym and the only item I could find that didn’t contain genetically modified ingredients was mushroom rice. They absolutely definitely got a letter (this was before emails – yes, that long ago). In fact this was shortly after the row over mechanically recovered meat and BSE that revealed all sorts of stuff was going into the food chain that shouldn’t. Nuff said on that one for now.

Probably the final, motivating factor in getting me to actually complete a blog after literally three months of non-starters (and the newest soapbox in the collection), is the recent trend towards veganism, which in my humble opinion has been totally hijacked by companies who have an awful lot of money to make from selling new products to an unsuspecting public. You could almost see them rubbing their hands in glee. When my body decided to go veggie – and yes, it literally did in the space of about 12 hours with no encouragement from me – a few years ago, it created a real problem. As someone who up to that point was eating meat on an almost daily basis, I didn’t really have much idea what to eat in its place. Something I did know, with my post-chemo awareness, was that I didn’t want a meat replacement to sit neatly between the potatoes and the veggies. I’d already read those labels a while back, and with products ranging from the ‘pseudo mince’ right up to the veggie escalope and sausage selection (none of which are exactly cheap), there was barely a single one that had words I recognised in the description. Words you don’t recognise, or end in –ose, or can’t pronounce in the list of ingredients probably don’t belong in our food. Just sayin’. The raw ingredients are there, lovely people. If you want to be veggie or vegan it’s perfectly possible to do so with lovely, natural ingredients. I’m currently amassing more recipes over on my ‘Lovely Recipes’ page if you’re interested.

It’s been a long blog, but I just want to share one more thing with anyone still awake out there. In these challenging times of fake news and dubious motivation it’s sometimes hard to know where to turn or what to believe. If you want a massive but ultimately positive dose of reality as viewed from the sharp end of farming, do yourself a favour and get a copy of Wilding by Isabella Tree.

She is an extraordinarily articulate and passionate woman, who with her husband inherited a farm on the Knepp Estate in Sussex that had failed due to the soil being over-treated with pesticides and fertilisers. Hers is an astonishing and deeply detailed tale of EU quotas aimed at over-producing highly treated grain (which is sold to farmers to fatten their cattle ready for public consumption). It’s a tale of rules, intransigent committees, exhausted soil, and apparently no way out of a desperate situation. However, they did find a way out, and returning their land to nature against much advice and opposition has resulted in it becoming a world class example of what happens when you leave nature to heal itself. In the words of Chris Packham: “A poignant, practical and moving story of how to fix our broken land, this should be conservation’s salvation: this is new hope.”

So that’s it for now folks. Wishing you good health and lots of fun reading those labels,

Margaret

 

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Bring me Sunshine…

Fancy a break, but you can’t get away just now? Grab a copy of my book (on special offer in the Kindle store) and indulge yourself in a virtual holiday on a beautiful ship as she travels around the Med. Feel that sun on your face. Aaaahhh…

“James leads me up the maze of outside stairways he discovered on his wanderings, until we are virtually at the top of the ship, where there’s a terrace of completely unoccupied sun loungers. Bliss. I spend the afternoon reading then sleeping then
reading again until I’m so hot I have to go down all those stairs to the middle pool for a swim…”

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