Margaret Cahill
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A time to reflect

Margaret Cahill
Posted by
26 Jun 2017

A look back at my experiences with Mantle Cell lymphoma, what I've learned and finding mindfulness

I guess you could say I was a completely unwilling participant in what is definitely the biggest event of my life to date (and I hope any more that are queueing up are a lot better than this one).

Getting married, having children, losing both parents within three weeks of each other, a big move halfway across the country, building my own business, marriage breakup – absolutely none of this compared to getting a diagnosis of Stage 4 Mantle Cell Lymphoma. And now - at the dizzy heights of the fourth anniversary of my stem cell transplant – seems a good time to reflect on the whole episode.

I know that some people (Jennifer Saunders, for one) draw a line under their cancer experience, as in, “Been there, done that, don’t need to think about it anymore,” but I find it very hard to do that. Am I alone in feeling it completely changed me? Don’t other people feel different? I wouldn’t say I was a flippant person before I was ill, but I am very definitely much more serious now, albeit possibly with a much darker sense of humour. Seriously in awe at the level of treatment I received on the much maligned but totally amazing NHS, and also seriously in awe of the strength of the human spirit in its ability to survive this sort of thing. People ask me how I coped with having very aggressive chemo, being in isolation, and running my own business. Apart from the obvious answer that I had fabulous support (for which I am incredibly grateful), there wasn’t actually any decision. I woke up every morning and there I was – still alive – so I just got through every day in the best way I could.

Some of those ways were definitely less attractive than others – the nausea was really, really bad, and having to take drugs for atrial fibrillation which kept making me pass out or fall over honestly wasn’t helpful – but we muddled through. I read some stunning books when I was well enough, had regular visits from the lovely community nurses, built incredible relationships with the hospital staff (several of whom appear in my book), wrote the blog and went into work whenever I was able. Oh, and rocked some seriously good head gear sent over by some lovely friends in the USA. I also did masses of research, as I’m one of those people who is forever going deeper to try and understand what I’m dealing with. I know this isn’t for everyone – as several readers pointed out when they reviewed my book – but it’s the way that works for me. Knowledge is most definitely power, and power becomes very important in the world of serious illness, where you suddenly don’t have any.

I had the kind of chemo (Nordic regime) which involved long hours on the drip, and I had to do something to stop the dark fears from crowding in and the resentment from building up, as I knew that would be very destructive. I said at the beginning of this that I was an unwilling participant – and I imagine everyone would be – but for me it was because I usually stay as far away from pharmaceutical drugs as I possibly can. I grew up in a very alternative household and here I was having to rely on the poison being pumped around my system in order to survive the illness. So I was battling with myself on several levels. Some people added comments on my blog suggesting I see the chemo as the good soldiers rushing in to beat the bad soldiers, but as anyone who’s had aggressive chemo will tell you, that is much easier said than done when it is making you so sick. It’s no coincidence that the phrase ‘kill or cure’ seems to relate pretty specifically to chemotherapy, a view that even my consultant agreed with when he was trying to sell me the idea of the stem cell transplant. His actual words were that the doctors know it is barbaric, but it’s all they have. Or had. Hopefully things have moved on in the last four years.

However, he was incredibly supportive of anything I wanted to do to help my poor body survive the treatment, as long as I told him about it. At one point I was on the verge of going to India for Ayurvedic treatment, something he knew about, coming from the area of India where it was developed more than three thousand years ago. In a long, long talk with us, which he really didn’t have time for, he told us that MCL changes to become resistant to the drugs, and that if I disappeared to India and the treatment didn’t work, then the chemo also wouldn’t work when I came back. I would have burned all my bridges. Put like that there wasn’t really any decision, but in going through the whole process of finding out about it,  I gained a massive supporter of all the apparently weird and whacky (in some people’s eyes) things I was about to try. Some of which, by the way, worked so well that I had regular visits to my isolation unit from other consultants who wanted to know more. Not so weird and whacky then, huh? Space doesn’t permit me to expand on them here, but they are listed on my blog under Vits, Tips and Resources.

 I also tried to ‘love my cancer’ but that idea lasted about two minutes as I couldn’t love something that was killing me, and as far as I was concerned it wasn’t ‘my’ cancer. It was an extremely unwelcome guest that was going to be booted out as soon as possible. 

So along with the reading and research, I discovered the wonderful Thich Nhat Hanh and his teachings on mindfulness, and it really, really helped me to stay sane. Those darkest hours just before dawn are the breeding ground for every fear and doubt out there, and with mindfulness I was able to switch them off, get a bit of sleep, and concentrate on getting through the treatment. So getting back to the title of this piece, I’d say that apart from discovering the total joy of writing the blog (and just about anything else), mindfulness is by far the strongest legacy of my illness and I wouldn’t be without it. It’s fantastic being four years on from the transplant, but I still have to work hard to keep the demons at bay, because I don’t seem to be able to banish them forever. But with mindfulness I don’t have to, as I’m learning to take every moment just one moment at a time. And that I can do.

Wishing you all good health

Margaret

Read more of Margaret's blogs about her experiences with lymphoma

Comments

27.06.2017

Hello Margaret

I have just read the above and so, so understand what you are saying. My edited highlights are/were Myeloma Sep 2014, Intense Chemo (nearly killed me, kind of) less intense chemo, Auto transplant followed a couple of months later with Allo stem cells transplant using stem cells from my sister. I am the luckyiest person alive. I have so so many friends and I am in remission, all this in under three years. I am humbled by the love I have. 

I so understand the demons, I say my head is in the shed again. Dark thoughts are always near and I cannot stop overthinking everything. My humour so ofen dark now and not everyone approves of things I say even though I say it in jest. 

I am always a positive person and often said I was "standing tall and digging deep" I didn't do the blog thing but I did record my journey in a book. When trying to explain things to friends and family I said my first transplant was like climbing Roseberry Topping and the second like climbing Everest. I wont be climbing Everest for real but I have climbed Roseberry Topping last may and raised some money for Ward 33 of the hospital in Newcastle where I was treated. The nurses and doctors there have looked after me.

I am so pleased you are doing well and so hope you continue to do so. Thank you for making me write something. Although I would talk to a lampost I have never written to anyone before.

Take care

David

 

 

 

 

 

 

06.07.2017

Hi Margaret, thanks so much for blogging how you really felt. It was really honest and helped me a lot. I have also found that mindfullness is very useful. Ward 33 at the Newcastle sound amazing and as you say we are so lucky to have our NHS service. You have been on quite a journey personally and healthwise and take care of yourself.