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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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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5 Responses to 95. A Sobering Thought

  1. Joseph Tomsic says:

    Hi Margaret. Long time since I communicated with you. I also have Mantle Cell and, like you, went through the bone marrow stem cell transplant which was nine years ago. I did relapse and am now on a wonderful new treatment called Calquense. You can google it to get the facts but it was developed specifically for Mantle Cell. Please don’t be afraid of the ablation. I had it bad but after going into my heart three times they fixed it. The AF cardiologist is from Vanderbilt and they call him the electrician. Tried many pills but nothing really helped. Unfortunately, I had to go on Pradaxa 75 and it’s blood thinning effects along with the Calquense is a little problematic for bruising, etc. continued good fortune. Joe
    Sent from my iPhone
    >

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    • Hi Joseph, so good to hear that you are alive and kicking :-) It’s good to know there’s finally a treatment especially for MCL as that’s always been the biggie they couldn’t cure, hasn’t it? How are you feeling? Are you heading for remission? Regarding the AF I really want to try the natural route as althugh I’m glad the ablation worked for you (eventually!) I’ve also heard some horror stories. With this in mind I’m off to see a Tibetan herbalist in a few weeks – several people have told me it worked for their AF so it’s definitely worth a go. Sending big hugs and best wishes for your total recovery :-)
      Mx

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  2. JANE CAHILL says:

    Oh Margaret, haven’t you been through enough shit!
    My mum has the same problem. She had the heart ablation last year but it went very wrong, the instruments tore her aorta almost from top to bottom, she almost died and the aorta can’t be repaired, as long as it stays stable she’s ok, she has frequent scans, but she’s a lot more worse off now and suffers constant dizziness 24/7 which has completely ruined her life. I fully understand how you must be feeling.
    I do hope you find some relief for this horrible condition.
    Keep up the blogs.
    Sending love
    Jane xx
    Sent from my iPhone
    >

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  3. Herman Oldenburger says:

    Hi Margaret – Thank you for your warm, humoristic blogs! I not only enjoy reading them very much but also find them very inspiring and I certainly do hope they have sort of a cleansing effect on your lovely self as well. So please do keep going!
    Warm wishes/Herman

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    • Hi Herman, thank you so much for your lovely comments. And yes, the blog is very cathartic and I always feel better when I’ve written one! Wishing you a lovely summer, Warm wishes, Margaret

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