Author Archives: Zsa Zsa Soffe

What’s in a year?

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What’s in a year?  The easiest answer is to state the facts – twelve months, 52 weeks, 365 days, 8,760 hours.  Although I should warn you Maths is not my strong point.  Today, a year ago, I sat in my consultant’s room and heard those dreaded words, “I’m sorry, you have breast cancer.” Stage 2, invasive ductal breast cancer, to be precise.

I sat in that room and went numb for a few moments.  It was just me, him and the breast cancer nurse.  I asked questions, but have no recollection of what exactly I asked nor what the answers were.  All I know is that there was no re-wind button.  There was only moving forward.  No other option.  The machine was in motion.  Two days later I had another nasty biopsy procedure on my right breast as there were concerns about that one.  Fortunately unfounded.  And, exactly a week after learning of my diagnosis, I went under the knife to have the offending lump and some lymph nodes removed from my left side.  A few weeks after that, another minor surgical procedure to have a portacath inserted into the right side of my chest – this would be the port of entry for months of chemotherapy and the site from which countless blood samples woud be taken.  And blood transfusions given.

Twelve months have gone by and I’ve got through surgeries, chemotherapy, faintings, debilitating fatigue and general apathy, pneumonia, partial loss of heart function (now recovered), radiotherapy and a raft of other tests.  My body’s been scanned and prodded.  I’ve even done the unthinkable and got tattoed!  (just kidding – tiny blue dot tattoos somewhere on my boobs to help align the radiotherapy machines) And I’ve got my boobs out on demand so many times I’ve become utterly blase about it.  Here I am, still standing, feeling great, and I’m full of hope and humour and the promise of good things to come.

A year is a unit of time.  But a year can be measured by so much more than the units of hours, days and months.  My measures for the past year are in the renewed health, vitality and sense of wellbeing I now have and the inner strength that got me through it all.  In the love and support of close friends and family, the great care from all the medical professionals and incredible compassion, understanding and support from colleagues and bosses at work. It’s been a good year… I can say that because my experience of cancer has opened my eyes to how much I have to live for.

PS.  It’s been a busy couple of months, hence no writing for all this time.

Let-me-down lymphocytes, negligent neutrophils…

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It’s a glorious, warm, sunny spring Easter Monday in London.  And I’m feeling annoyed and frustrated with my body.  I know, I know….it’s brought me so far along the way to recovery from breast cancer and the awful months of treatment and really, the human body – mine included – is nothing short of a complete marvel.  But I’m still annoyed.

I’m quite competitive.  Not so much with other people; a few years ago I went to boot camp classes once or twice, but exercising in a group didn’t fire me up to get competitive – instead I found I felt bad about myself for always being the slow coach at the back.  I’m competitive with myself.  I’m my own worst critic and my own best cheerleader and coach.  Clearly those personalities clash with each other at times.  None more so than right now.  My lymphocytes are letting my down, my neutrophils are neglecting me!  And instead of a bit of self-compassion, I’m feeling pretty p’d off with myself!

You learn a new language when you have cancer.  Suddenly, you become preoccupied with haemoglobin, neutrophil and lymphocyte levels. The numbers on a blood count report have a way of determining how you feel and how you cope with what your body is going through.  During my months of chemotherapy treatment, I became fascinated with my bloods, insisting on having a copy of the report after every blood test (and you have a LOT of blood tests when going through chemo), and filing them away after poring over the stats and comparing last time’s with this time’s numbers.  I felt empowered knowing what the different things meant – low haemoglobin / red blood cells explained why I had no energy; low white blood cells (lymphocytes, neutrophils and various other ‘cytes’ and ‘phils’) meant my immune system was below par and that I needed to be careful about exposing myself to anyone infected with a cold or viral infection.  I’d congratulate myself when the numbers were slightly up on the previous time, and feel momentarily down when they weren’t.  I’d try and analyse what – apart from the obvious fact my body was taking a massive hit from a hideous, radioactive-looking set of chemo drugs on a regular basis – I’d done or could do to improve my numbers.  Eat more greens, sleep more, will myself to get stronger and feel better?  And for the most part, throughout treatment, I was on my side.  I looked after myself and surrendered myself to the bad days without feeling bad; I simply recognised that I had to listen to my poor body and give it the rest and kindness it needed.

But now, this is meant to be my up time. Treatment is over.  My hair is growing.  I look well, so everyone keeps telling me.  And, I’ve been feeling increasingly stronger.  My energy levels have been on the up and psychologically, I’ve been in such a positive space so far this year.  In the past six or eight weeks, I’ve been building up my fitness with brisk walks nearly every day, gradually increasing the distance.  And I’ve been increasing my hours at work.  Not by much, but still a small increase.

So, it’s perhaps no surprise that I came down with a nasty viral cough-cold thing about ten days ago. And have felt so rough as to have gone to bed for a couple of days last week. In the middle of this, I got back the results of a full blood count my GP took a few weeks back.  And guess what? my lymphocytes and neutrophils are still low.  Not by much, but low enough to reflect that my body is still recovering from chemotherapy and that my immune system is not back up to full whack.

So I need to give myself a break and quit the negative speak and feeling angry at my white cells for not being strong enough to fight infection right now.  But it’s easier said than done.  That inner cheerleader appears to be on Easter vacation right now…

Lympha…WHAT?

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WARNING! If you’re a bloke, or in any way squeamish or don’t like talking about boobs and blood and stuff, look away now!

So, breast cancer surgery brings with it the risk of developing lymphoedema. Yeah, I know.  Lympha-WHAT? exactly what I asked….

I have big boobs.  Really. Big. Boobs!  I think something went slightly awry in the genetic petrie dish as it would seem I got my sister’s AND my own share of flesh to adorn my chest!  I spent my teenage years and early 20s hating the size of them, and trying to hide them under voluminous baggy clothes. Somewhere in my 30s I came to terms with them, developed some body confidence and started wearing more figure-hugging clothes.  My diagnosis of breast cancer came well into my 40s.  Even for someone like me with an ambiguous relationship with my breasts, it’s pretty devastating to hear those dreaded words: ‘You have breast cancer’; but every cloud has a silver lining, so they say.  My silver cloud was the size of my breasts meant that I would not need to have the whole breast removed.  It was feasible for my surgeon to do a lumpectomy, i.e. remove the offending lump, which he warned would cause ‘some loss of volume’, but quickly added, ‘not that you’ll miss it’!  You’ve got to love the guy for his sense of humour.

I had my lumpectomy on the 23rd of June 2014, ten days after my diagnosis and only after a further investigative procedure on my right breast, called a steriotactic biopsy (more traumatic for me than surgery and perhaps the subject of a future blog post).  He also removed twelve lymph nodes from under my left arm, three of which were cancerous. Hence the need for the full menu of chemotherapy and radiotherapy which dominated the second half of year for me.  Anyway, I came round from my surgery feeling a bit sore and with a drain emanating from under my arm releasing the build up of fluid and blood and gunk that accumulates once lymph nodes are removed.  Not pleasant to deal with. But fortunately for me, I only needed the drain for a few days and was free of it by the time I went home.

While in hospital, the physiotherapist came to visit me every day and it was through her I learned about lymphoedema and other risks that might materialise post-surgery.  Loss of feeling in the left arm and underarm, loss of mobility in the arm (and hence an imperative to do regular exercises), nerve pain, and lymphoedema.  The loss of feeling/numbness is disconcerting, and the nerve pain horrible as it is quite extreme at first – sort of shooting pains down your upper arm, and sometimes into the boob.  It settles down, but still now, nine months after surgery, I have ‘dead’ areas under my arm and I still get nerve pain in the arm and breast which takes me by surprise.  And others, for that matter!  A number of times I’ve caught people giving me an odd look…. and then I realise I have instinctively grabbed my boob in pain! I tell you, this disease robs you of dignity at times. But I’ve become quite blase about taking my top half clothes off and having various people peer at my chest with great interest, and prod, massage, manipulate and move about the considerable amount of flesh that makes my chest, my chest!

While I’ve been lucky not to get lymphoedema in my arm (thus far – it can develop at any time), which can be very painful and uncomfortable, I have got it in my breast.  Side effect of radiotherapy which causes tissue damage and inflammation.  As though mocking my surgeon’s insistence I would lose a bit of volume, actually, my left breast is swollen, thanks to a persistent collection of fluid. We’re trying to get rid of it through regular lymphatic drainage – a specialised type of massage to encourage the lymph system to operate healthily.  So, I’ve been schlepping up to Wimbledon twice a week to have my boob massaged by the nice lymphatic drainage therapist.  It’s not an entirely unpleasurable experience, but kind of weird and surreal too!

of lemon curd…

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Lemon Curd1There is nothing quite like home-made lemon curd.  For a start, the colour of it just makes you happy. Made with really good quality non-battery-farmed eggs, real butter, the best lemons you can find (off your own tree, ideally), and sugar, the finished product should be the vibrant colour of day-old chicks, or sunshine daffodils.

Lemon curd is one of the very first things I learned to make.  I can’t have been more than five or six.  My Mum used to let me stand on a chair and stir the ingredients gently in the top of the double-boiler until they magically came together into the unctuous lemon curdy deliciousness that I couldn’t wait to spread on a slice of bread. Or, impatient, I’d lick the wooden spoon tentatively, inevitably scorching my tongue and fighting back the tears lest I be forbidden from ‘helping’ in the kitchen ever again!

Mum's lemon curd recipe

My Mum’s recipe, in her own writing. The paper all stained with egg and evidence of being used multiple times. I use a different recipe now, one with significantly less sugar.

Nowadays, I don’t have a double boiler.  Come to think of it, I’ve not seen one in years. Perhaps they’ve gone out of fashion.  If I were purist, I’d fashion a bain marie with a glass bowl over simmering water. I’m no purist. And I’m impatient.  And why have two things to wash up when you can make do with one?  I make lemon curd in a normal saucepan these days.  This means it’s even more important to stand over it, gently stirring over a gentle heat, to make sure that you don’t end up with fragrant, sweet, lemon-flavoured scrambled eggs!  It doesn’t take long (significantly less than the 10 mins indicated in my Mum’s recipe), and there’s something therapeutic and utterly rewarding about the process of stirring and watching these simple ingredients come together and gradually thicken.

The thing with home-made lemon curd is that, being free of artificial preservatives, it does not keep.  But that shouldn’t be a problem – it’s so yummy, you’ll be tempted to sneak spoonsful straight from the bottle when no-one is watching. I don’t have that problem – well there has to be some advantage to being single! Anyway, I tend to give away most of what I make.  People cannot believe how different it is from the pale commercial stuff that calls itself by the same name.

RECIPE: Lemon Curd

  • 3 lemons – grated rind and juice
  • 75 g butter
  • 150g sugar
  • 3 eggs, very well beaten

This is the quantity you get from this recipe, with a spoonful left in the saucepan for the cook…

Place lemon rind and juice, butter and sugar into a saucepan over a low heat.  Stir continuously.  When some of the butter has melted and the mixture is still not too hot, add the eggs and use a hand whisk to mix all ingredients together.  Continue stirring over a low heat until it starts to thicken.  If you’re using a whisk, at the point it starts to thicken, change to a wooden spoon or heat-resistant spatula so that you are pulling the thickening curd away from the sides and bottom of the pan.  Do not allow the curd to come to the boil.  The finished curd should coat the back of a wooden spoon.  Pour the hot curd straight into sterilised jars.

Finding the funny

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Make no mistake, cancer is a serious business.  It’s an insidious disease that manifests in countless ways, and for which we still have no cure.  We can board a plane and be in New York in less than half a day. We can fly to the moon.  We can send messages across the world and have a response within minutes.  We can take high-quality images with our phones. We can talk to our mates in another timezone through our computers and see them talking back at us on the screen. We even have cars now that know how to park themselves (apparently).  But cancer… still no cure.  Again, I say, it’s serious business.

So. Cancer is no joke.  But that doesn’t mean I didn’t find the funny at times during six months of pretty gruelling treatment. I believe that humour is an absolutely essential survival skill in life, along with tenacity, a positive outlook and an ability to be resourceful.  If we cannot laugh at ourselves and the absurd situations in which we sometimes find ourselves, life has a tendency to become a drudge.  Finding the funny in the face of my own experience of cancer helped keep me sane, grounded and positive throughout

Chemotherapy is not fun, trust me.  But my very first session – six or seven hours on Friday 25th July last year – gave me an opportunity to, well, if not laugh out loud, rather smile inside at the absurdity that life sometimes hands us.  The lovely Zimbabwean nurse assigned to me (yes, wasn’t that a good sign? to have a fellow Zimbabwean look after me) talked me into trying the ‘ice cap’.  This contraption helps many chemo patients hang onto their hair by cooling the head and roots of the hair to sub-zero temperatures.  I don’t know enough about the science, but it works for some people although there are no guarantees.

Pissed off and no sense of humour - gritting my teeth through the cold and pain

Not NASA’s newest weekend wear for the aspiring female astronaut!  No, just the selfie I took while gritting my teeth through the nausea, pain and cold of the ice cap.

Anyway, to Thembi’s suggestion I said, “Yes, why not?”, whereupon she wheeled a refrigeration box over to my couch, strapped me into the cooling helmet and told me to sit tight and grit my teeth through the first 20 minutes, after which the discomfort would ease.  Right.  Piece of cake…. Or maybe not so much!  Imagine doing a headstand in deep snow and holding the position…. for HOURS!  The helmet is tight, constricting and you get brain freeze and it’s so cold, it actually hurts.  Which is why I look so pissed off in this photo.

Entry from a diary I kept at the time:

“Scalp cooling helmet goes on – it’s minus 5 or 6! Horrible, heavy, tight, uncomfortable and I feel a bit nauseous from the brutal hit of frozen ice which actually hurts.  A LOT! I drink tea and try to not think how horrible it is.  And then, 10 minutes or so go by, and it’s fine.  Still horrible.  Still tight and heavy and uncomfortable.  But I’m getting used to it.  I check myself out on my iPhone and take a selfie – send it to sister and friends: me auditioning for a role in Dr Who? or maybe a remake of Top Gun for a pilot role?  Def not the sexy tutor role (Tom Cruise’s squeeze in the original).  Even I don’t have such delusions!”

Wearing the ice cap adds several hours to your chemo session as you have to wear it for an hour before starting the drip of chemo drugs, throughout the four or five hours of drug administration and for an hour afterwards. It didn’t take me long, after chemo #1 to decide I would just resign myself to losing my hair.  I’d had my hair cut very short before chemo, in anticipation of losing it through treatment, so I was sort of psychologically prepared.  I had also been with my Mum when her hair started falling out in handsful some weeks after her first chemotheraphy, and I took her, on a new year’s day in South Africa, to have her hair shaved.  So it was quite poignant when, a few days after chemo #2, mine started coming out in chunks and just looked, well, dead.  Off it came…

2015: my year of living optimistically…

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I’ve made a decision!  This is to be my Year of Living Optimistically.  Not that I’m a pessimistic person, but I don’t feel I’ve had much to feel that optimistic about in recent years.  Those of you who know the history of my recent past will know why, and perhaps I’ll get to writing about it here, over time.  And then, on top of that ‘recent past’ (2011 to 2013), this week, a year ago, I found a lump in my left breast.

I was in the shower, and knew immediately something was not right.  I made an appointment to see my GP the following week.  However, three days after finding the lump, my lovely, gentle Dad died.  Inexpressably sad, but at the same time a huge relief washed over me at the thought that he and Mum would be reunited in death – Dad was so lost without her by his side.

Then followed a two or three week hiatus while I joined my sister and family in SA to attend to Dad’s affairs and then back to London and a new appointment with the GP.  Fast forward through April and May, countless visits to doctor, specialist, mammograms, ultrasounds, and, in the midst of the seemingly endless diagnostic process, an appendix that blew up for no good reason and had to be removed.  Mid June, the 16th, to be precise, and I heard the words I really hoped I’d not hear from my consultant: “You have cancer”.  My reaction – a blank stare and a voice in my head going: “really?… I mean, REALLY?”  And then, very quickly, the strong independent woman in me kicked in and I went into pragmatic mode.

Face reality, listen to the experts, put your trust in them, make your own informed decisions, move forward.  That’s how I handled things.  I simply did not allow myself to dwell on questions of “why me?”, or “what if…?”. I set about living through surgery and then six months of treatment with a one-day-at-a-time mantra in my mind and heart.  It worked.  For the first time in years, I was actually living in the present, consistently, every day.  On the bad days, I acknowledged them for just that, and simply went with it, reciting my Dad’s mantra of “go with the flow” and inevitably, the next day was just that little bit better.  On the good days, I used my energy well to look after myself in the best possible way.

And here I am, a year on from finding the offending lump, and tomorrow, it’s a year since Dad died.  Yes, it’s sad and poignant and all that.  But I am feeling so alive to the possibilities that lie ahead. Life is good.  I’m in a good place.  I’m going to be okay.  I am okay.

Lasting love…

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Golden Anniversary family breakfast

Golden Anniversary family breakfast

Yesterday, the 30th of August, would have been my parents’ 54th wedding anniversary. We celebrated their 50th anniversary as a family – my sister, my niece, my uncle Bruce (Dad’s youngest brother) and Mum and Dad – at Bushwillow, a small private game lodge in Natal, South Africa.  A happy time, intimate and full of the joy and warmth that comes with being in the company of people one loves.

I am single, in my late forties, and I won’t ever know what it takes to be married to someone for fifty years.  I do know though, that my parents’ marriage is something I have always admired.  They were devoted to each other and were a real partnership.  The secret of their success and longevity as a couple, I believe, was that they had no secrets from each other.  Their problems were each other’s problems. Financial worries on the farm – there was no pulling the wool over Mum’s eyes – she knew every intimate detail of the farm’s workings as she managed the farm books for Dad and, having run the farm single-handed during the Rhodesian war years, on and off, she had plenty of her own ideas on how to improve things.

Mum’s direct, sometimes domineering way was a perfect complement to Dad’s quiet reflective nature.  And sometimes, it’s true that the difference in their temperaments could make for an uncomfortable atmosphere around the home.  But, the foundations of their unassailable love and respect for each other were strong and deep and always overcame any temporary disagreement or difference of opinion that they might have had.

Now, with both of them gone, I realise the legacy they have left.  It’s a legacy that no-one could ever put a price on.  Their love for each other, for me, my sister, her husband and her children and the family that we were together, is something that does not die.  The legacy of lasting love lives on – it lives on in our memories and hearts, and it lives on in how we live our lives.

My blog: stepping into the unknown….

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14 March 2015 – update

Ha!  Funny that for my very first blog post I wrote about my capacity for procrastination…. nearly seven months later and only two entries, which, although published, I did not publicise. Incapacitated by what I was going through, and the fear that by writing about it would somehow consume me, coupled with not wanting to be a victim and succumb to the inevitable sympathy that people reflect back at you when you have a diagnosis of cancer.

And then, a few days ago, my friend Tobina “Beana” Mackenzie ‘outed’ me on facebook – I can only assume she’d fallen upon on my blog while traipsing through t’interweb!  Anyway, several other comments from friends all expressing interest, and here I am, feeling spurred on by the collective encouragement.  Thanks Beana, and thanks friends.  I shall try to live up to your interest!

~ZZ

Hello

One of my weaknesses has always been procrastination.  In fact, I think procrastination is probably the first really long word I learned as a very young child, as I remember my mother telling me repeatedly that I was a procrastinator!  My problem is that I get tangled up thinking about whether I am going to be any good at the thing I’m contemplating starting – there’s this competitive streak in me that wants to do really well at whatever I put my hand to.  And not doing it at all is sometimes better than taking the risk and finding out I’m mediocre, or worse still, a failure altogether.

SO.  Here I am.  Starting a blog.  I’ve been thinking about doing something like this for a long time.  I’ve had this desire to express myself somehow, someway, somewhere.  I used to keep a journal as a younger woman and while I would never have shared those awful, angst-ridden entries with a public, there’s something in me now that wants to see if what I write can land well with others, be appreciated even.  Having said that, it’s not why I’ve decided to do it.  It’s part of it, but not the whole piece, not the main bit.  I need to do this for me.

What’s my blog going to be about?

Whatever’s on my mind.  Mainly though, I think it’s going to be about family and food – how food and family and the community of both have shaped my life.  Come with me and let’s see where I go with this!

~ZZ