On the other side

This week, I have my first 3 monthly check up post my clear scan, ‘cancer free’  result back in October.   Life has resumed it’s previous patterns but I am changed and adapting.  Every cancer patient wants to hear that they are cancer free, but in some ways, coming back to life, learning to live again,  is harder than treatment.  All you have to do in treatment is to endure it.  I’ve learned that I’m good at endurance.

The clear scan result back in October  was what we expected.  When I met with my oncologist after the last chemo cycle I said to her that presumably there was a chance that the scan may show something; she said that she would be ‘astonished’ if it showed any cancer given the surgery,  and the aggressive radio and chemo regime I have undergone, but, there was still a chance.  Mike came with me to see the oncologist and although we were both fairly unemotional in the room, when we got outside we hugged each other tight and shed a few tears.

Since my diagnosis, I have heard many stories that have made me realise that I have been lucky in so many ways.   Virtually everyone I know has had some experience with cancer yet it tends to be whispered about rather than talked about openly.  There is still so much fear and ignorance about what cancer is, what treatment involves and what the outcome is likely to be.  Somehow when you are diagnosed you become ‘other’ and undoubtedly a diagnosis changes you.

I am very grateful to my GP for picking up my symptoms so quickly meaning that my diagnosis was rapid.  I’ve heard stories of women who have gone undiagnosed for months and even years after first going to their doctor with symptoms similar to mine and a feeling that something wasn’t quite right.  They call ovarian cancer ‘the silent killer’ because so many women go undiagnosed until their cancer is late stage.

I believe I had the best possible care right through my treatment – I am so grateful for the skill and care of the surgeon, oncologists, pathologists, radiologists and nurses who treated me.  I am here today because of them.

In a year, I have done no paid work.  I was lucky to have income insurance, although not actually quite the insurance I needed, as it turned out.   My life in 2016 was about enduring treatment and keeping the household running.  And actually I loved that.  I did not miss the world of ‘work’ one iota. Me, my marriage, my family, my step daughters were my world

In the space of 6 months I lost and grew a full head of hair, eyebrows and eyelashes.  Now my hair is curlier, my eyebrows darker, my eyelashes longer.  My body, it’s appetites, how it works and looks has changed.   This has been a powerful lesson in identity.  I have been stripped down to the bone but I am still me.  Although I have new insight into my strengths, the things I didn’t like about myself before have not been somehow been ‘burned away’ by cancer.

We who are ‘cancer survivors’ are a curious bunch.  We have all had to face the fact of our mortality.  It is one thing to know that you will die at some stage in the future, it is another to think that might be within the next few months, or the next year – for me, was it worth buying summer sandals in a northern hemisphere sale when I might be dead before summer arrived. (I did,  I’ve only worn them once).

 

 

My body and I

 

The second week in November is going to be a big one for me.  I will get the results of my post treatment scan, and now I will also get the result of a biopsy that my GP has performed on a suspect mole.

I went to see my GP for the standard skin cancer check last week.  He’s been keeping an eye on a mole on the back of my thigh for a year or so now.  I joked with him that I felt as if I deserved a ‘free pass’ from any other cancer for a year or two, but as he said, it doesn’t work like that.  He doesn’t think the mole is particularly worrying, but he can’t be certain that it’s harmless and I think he is probably being extra vigilant and cautious.  My logical brain is telling me that everything is likely to be fine, but when he told me he thought a biopsy would be a good idea, I felt a lurch in my stomach.  This is how it starts.

Cancer has caused me to rethink my relationship with my body.  I’ve recently realised that I’ve been in a battle with my body for most of my adult life and that this in itself is one, and possibly one of the most important,  issues I should address.  Until recently, I have rarely looked in the mirror and been anything other than critical of what I’ve seen.  Probably most women know the feeling of ‘not enoughness’ – not slim enough, tanned enough, smooth enough, shapely enough. But finally, after at least 40 years of focussing on all the things my body wasn’t, I am starting to appreciate all the things it is.  I have a strong aversion to the ‘cancer as war’ metaphor, and that includes the current ‘Stand up to cancer’ campaign the slogan of which I find misplaced and patronising.  Those of us who have or have had cancer DO stand up to it every single day if that means that we deal with it and go on living our lives.   What’s the alternative?  To ‘lie down’ in the face of cancer?  Cancer is a strange disease in that it is a product of our own bodies – it is our own cells that form the tumours, not some outside invader.  I can completely understand why some people, particularly those who have led ‘clean’ and healthy lives, feel that their bodies have somehow betrayed them by ‘getting’ cancer.  But for me now, it is vitally important that I see my body not as something to be fought or endured or criticised, but as my ally, to be nurtured, listened to, appreciated.

I don’t think of myself as being sick; I think of myself as being healthy, strong and fit.   Exercise is an essential part of my recovery – from a physical standpoint, but at least as importantly from a mental and emotional standpoint. I don’t (yet) have the energy  to do the sort of cardio and strength workouts that I used to do, but I walk, do Pilates and stretch classes, and most enjoyably of all, I’ve been doing a regular Barre class at the gym (a ballet based class).  I did ballet and tap as a kid for more than 10 years, and although I was never going to make prima ballerina (my dance teacher once told me that I had the face of a ballerina but not the legs), I had forgotten how much I loved it.   I get so much joy from moving my body and seeing how strong and graceful it still is despite six months of cancer treatment.

This week I started running again.  I have signed up to do the Dual,  an off-road half marathon, in March.  So far I have done one day of running 1 minute and walking 1 minute for a total of 20 minutes, and one day of running 2 minutes and walking 3 minutes for 20 minutes.  There is a long, long way to go, but rather than lapsing into my previous narrative of not fit enough, not fast enough, I am now revelling in being able to run at all, and in the resilience of my body after six months of radio and chemotherapy.

As for my scan and biopsy, I feel confident that both will be okay, but there is the tiniest grain of uncertainty.  Rather than ignore it, or attempt to squash it, or feed it, I am trying to just accept it and let it be.

Hair today ….

I knew when planning my chemo chic wardrobe, that my hair was almost certainly going to fall out, but what I failed to take into account was that the process of it falling out would take some time.  Everywhere I’ve been for the last two weeks,  I’ve left a trail of fine silver hair.  I hadn’t realised just how many hairs I had on my head, and however much falls out, there’s still more to come.   I’ve had to put away all my black and navy tops and am currently almost exclusively wearing grey to avoid looking like some kind of crazy cat lady.

Losing my hair has been far more upsetting than I had thought.  It’s taken me about a week to be able to look myself in the mirror without flinching, and about the same time to figure out why I have been so upset by it.  I think there a few factors at play.

I’ve never thought of myself as being particularly vain, but going through this experience has a way of finding cracks in my self image and identity.  I do care very much about how I look and I have my vanities.   I like to look and feel fit and healthy and as if I am taking care of myself.  As I’ve got older I’ve liked to think that I look younger than I actually am, or at least good for my age. Before my hair was reduced to its current thin, silver down, I took pride in people telling me how healthy I looked even though I had cancer.  But now it is obvious that something is wrong.  I look like a cancer patient.  It’s easy to internalise that, and to start thinking as if I am more frail, more of an invalid, sicker than I actually am and for that to change how I behave, what I wear, even how I stand and walk.  It’s important for me to think of myself as an essentially healthy person who is dealing with the effects of having toxic chemicals dripped into my veins once every three weeks.  As soon as I think of myself as ‘sick’, my world and my sense of self shrinks.

Although I didn’t think about it until a few days ago, my mother lost her hair when she was being treated for a brain tumour.  Somewhere I have a photo of her, taken at my parents’ silver wedding anniversary, only about 5 months before she died, and her hair looks very like mine does now (although hers was less grey, she was three years younger than I am now).

As well as looking sicker, I undoubtedly look older.  I worry about whether my husband will still find me attractive when he is waking up in the morning next to a bald woman.  They say love is blind, but bald?

But I can now look at myself in the mirror, and I’m getting used to how I look.  My lovely hair dresser Leigh (at Stephen Marr), has trimmed what’s left of my hair (and very kindly refused to take any payment for it).  Some days I feel happy to go out without my head covered, but most often I am wearing one of my chemo caps.  For now, I still have my eyebrows and eyelashes, and with eye make up on and wearing a suitably chemo chic outfit, I can go out without feeling like a freak, and most of the time, feeling reasonably good.

Why?

When I was initially diagnosed, I consciously avoided thinking about why I had got cancer. I felt that it was a waste of energy and that it wouldn’t change the fact that I had it or what treatment I needed.   But I’ve now come to realise that I do have to grapple with ‘why’, not so that I can sheet my cancer back to a specific cause, but so that I can put together a plan to minimise the chance of recurrence, and to find the right balance between minimising risk and getting the most out of my life.  For some reason, at some point (neither of which can ever be determined) something went wrong in my body that allowed cancerous cells to multiply.  It seems logical to assume that if nothing changes between whenever I ‘got’ cancer, (although ‘getting’ doesn’t feel like the right verb, I didn’t ‘get’ it from somewhere, but more of that later), the same cellular environment is likely to exist, and with it, a good chance that cancer may recur.  So I need to think really seriously about what my risk factors are, and what I can and am prepared to change.

It’s been nearly 3 weeks since my last treatment.  It has been a strange, drifting time.  As much as it was a relief to finish with daily radiation, it gave a shape and focus to my days and a sense that I was doing something towards being fully well again.  I didn’t really feel much in the way of side-effects until a few days after my final treatment.  Suddenly my body reached some sort of toxic ‘tipping point’ when the accumulated toxic load became more than I could process easily.  Now I know what people mean when they talk about ‘chemo brain’.  It’s a horrible feeling, hard to describe.  My world was a foggy blank, I had no interest in anything (although my appetite was undiminished!), I didn’t want to sleep even though I had no energy, I didn’t want to read, listen, watch, talk.  I didn’t want to be alone, but I didn’t want company. I didn’t want to do anything, but I didn’t want to do nothing.

I inhabited this strange, vacant, ‘between’ place for a while, and I’m not sure I’ve completely left it even now.  But, as the fog started to clear, I wanted to start cleaning up my diet, getting back to exercise and meditating, all the things I’d planned.  Instead, my days just seemed to drift by without me being able to summon the energy or motivation to do much at all – triggering the ‘I’m lazy’ story yet again.  As well as feeling frustrated and down on myself about this,  I seemed to be reluctant to tackle the ‘why?’ question  and unwilling or unable to do the intellectual work necessary to try to navigate my way through the shoals of conflicting opinion and advice.  I felt paralysed, and then frightened. What if there are things that I should be doing that I’m not?  What if I am doing things that I should not be doing?  How dangerous is that glass of wine? What damage might that bite of cheesecake do?  Should I be taking more exercise or taking it easy? Have I got unresolved emotional issues that are hurting me?  Will the next stage of chemo do more harm than good?   As I have done more research, the picture has become less clear and more complex.

On her website, Sophie Sabbage, an English woman living with (so-called) terminal lung cancer has a helpful PDF called ‘Trace the roots of your cancer’.  It lists 48 possible reasons, covering physical, environmental and emotional factors, and that is without specific reasons that might cause gynaecological cancers – chemicals  in tampons, talcum powder, damage caused by IUDs, having unprotected sex, never having been pregnant etc etc.  Some changes are no brainers – e.g. no longer using chemical products on my face, hair and body.  Others are clearly good things to do but expensive, so I need to weigh up potential benefits against cost – e.g. having mercury fillings removed,  a course of intravenous Vitamin C, weekly acupuncture/massage.   Others are hard to pick – e.g. some swear by a raw vegan, alkaline diet , and others cite a ketogenic diet, high in meat and saturated fat and therefore strongly acidic as being the way to go.  Rather than feeling paralyzed by the sense that there is just too much to think about and it’s too difficult to make decisions, I’m trying to take one step at a time,  getting as much information as I can, weighing its credibility, and seeing what my intuition is telling me.

But at the base of all this I think my reluctance to tackle ‘why?’ was that whilst I have liked to think that there is nothing I regret, as I have forced myself to think about what may have triggered /could trigger my cancer, I have had to recognise that I have been fooling myself.  There are many things I regret, and some of them are almost certainly linked to my cancer. Although therapy and counselling have dealt with some and hopefully most of the major issues, although I am now happily married, although I don’t work under the stress I used to, although I have a much healthier lifestyle overall, I feel that there are some stones yet to be turned over.

 

Next steps

I met with my medical oncologist yesterday to talk about phase 2 of my treatment.  She is very pleased with how well I’ve held up to treatment to date.  I’ve had limited side effects having been lucky enough to avoid the nausea that’s commonly caused by cisplatin.  My bloods have stayed steady in the normal range – white blood cells, platelets, liver and kidney function – which means that my body is dealing well with the toxins and cell damage.  On the downside, I am definitely getting more tired and my brain isn’t as sharp as normal.  I can’t concentrate for long periods and I find myself staring into cupboards unable to remember what I’m looking for. One of my step daughters asked me last night if the next phase of chemo was going to make me grumpy.  I laughed and said ‘yes, have I been grumpy so far?’, and she said ‘yes, a little bit’, which I thought was kind given that I have had moments of feeling as if I wanted to rip someone’s head off.   Apart from the fatigue, one of the anti nausea drugs I’m taking has ‘labile affect’ meaning that it causes mood swings.  Watch out!

I have 1 more chemo treatment and 5 more radiation treatments to go, and then I will get 3 weeks off. It will feel a bit like getting out of school.   I am looking forward to not having to think about the state of my digestive system for hours every day, and gradually being able to resume my normal diet.

Dr Stephens has warned me that phase 2 will be tougher and I am likely to feel more side effects, not least because my body is already carrying the burden of the chemo and radiation I’ve had to date.  The drugs in this phase (carboplatin and taxol) are less likely to cause nausea (although everyone reacts differently, so I can’t assume this) but more likely to cause arthralgias and myalgias – flu like aches and pains in the joints and muscles.  I am steeling myself for the loss of my hair which I suspect is going to be more upsetting than I had thought.  And the fatigue and ‘chemo brain’ will intensify.

I am having four 3 weekly cycles and the likely pattern is to feel worst during the first week after treatment, and to be feeling fairly normal by the last week.  I will get a blood test just before each cycle to check that I am well enough to go ahead with the next treatment.

I am apprehensive.  But all has gone well to date and I trust myself to be able to deal with what comes next.  Once treatment has finished, which all being well will be in early October, I will have a baseline scan and then three monthly check ups for the first couple of years.  Then I can focus on getting back to full health, strength and fitness.  My aim is to make 2017 one of my best ever.

Onwards!

On being productive

I’ve just finished reading ‘When breath becomes air’, a wonderful, heartbreaking book written by Paul Kalanithi,  a neurosurgeon, about his experience of having terminal lung cancer. He died aged only 37.  There is so much wisdom and insight in the book, that I’m sure I will be thinking about it for days and weeks to come,  but given that I had already written most of this blog when I finished it, one passage in particular stood out to me:  “Grand illnesses are supposed to be life clarifying.  Instead I knew I was going to die – but I’d known that before.  My state of knowledge was the same, but my ability to make lunch plans was shot to hell.  The way forward would seem obvious, if only I knew how many months or years I had left …….. The truth that you live one day at a time didn’t help.  What was I supposed to do with that one day?”

After I had my breakdown in the early 2000s, therapy helped me emerge from the fog in which I had been subsisting.   I had cognitive behavioural therapy which involved looking at my stories about myself, my life and the world, and challenging their validity. One of my most prominent and persistent stories is that I am lazy. When, in response to a question from my therapist, I would finally say ‘it’s because I’m lazy’, she would say ‘ok, so, let’s look at the evidence for that’. As we looked for evidence I would quickly realise that my laziness is in fact nothing more than a self esteem sapping story.  Yet that story still runs. Even now, my inner voice tells me I’m lazy on an almost daily basis, and ‘looking for the evidence’ has become an almost reflexive habit.

As a child the value of hard work was drummed into me. My mother began her working life when she was just 12. After their parents died, each of her older siblings took one of the younger ones. My mother went to work in service with her older sister Kathleen. My parents were both from County Cavan in Ireland, but they met, married and brought us up in England and as for so many migrants, a strong work ethic underpinned their dream of building a better future for their children. When we were growing up, my mother had four children to care for aged within seven years of each other. She had a job as a district nurse, and we had a small holding, growing all our fruit and vegetables, and keeping pigs, chickens and calves at various times. At Christmas time, my parents sold oven ready chickens. After they had each done a day at work, my mum would cook dinner. After we’d eaten, us kids would get ready for bed and my parents would go down to the shed for several hours of slaughtering, plucking and preparing chickens. If we needed them, I had to put the light on in the upstairs toilet as a signal. How little I appreciated then how hard they worked for us. I feel ashamed now that we teased them for falling asleep in their chairs on Sunday afternoons; they must have spent 20 years being utterly exhausted.

My mum was determined that I would have opportunities that she never had. She took me to ballet and tap lessons every week, she made tutus for me from scratch.  I had piano lessons, I had ponies. I was clever, so I was sent not to the local comprehensive or grammar school but to La Sainte Union Convent, a direct grant school in Bath. The fees were paid for, but my parents had to find the money for everything else – the blazer, hats (maroon felt in winter, straw boater in summer) gloves (maroon wool in winter, white cotton in summer), uniform shoes, PE uniform (white aertex shirts and scratchy wool culottes) etc.  I don’t remember my mother ever telling me that I had to ‘earn’ any of this, but I do remember while still at school, feeling strongly that I had to make the most of these opportunities,  and live up to my parents’ hopes that I would do well and ‘succeed’, although what that meant, beyond being financially independent, was never clear.

Since then, however hard I have worked,  I have never quite silenced the voice in my head that says if I tried a bit harder and got a bit more organised,  I would be a better person.  I would Marie Kondo the entire house, I would write menus for the week and never waste any food, I would read all the business books sitting on my desk, and write multiple  brilliant (obviously) Slideshare presentations,  I would work out a budget and stick to it.  Rather than the long ‘to do’ lists that I habitually keep and never get to the bottom of, I once started keeping a ‘done’ list.  It made me feel good in the short term but didn’t solve my problem; no matter how much I’d ‘done’ I’d still never done quite enough.

For a while, when I was first diagnosed, the voice that says ‘you’re lazy’ was silenced.  In contemplating the possibility of a life cut short, my ideas about what it meant to be ‘productive’ were turned on their head.  But as the initial rush of fear has faded and I’ve moved from crisis mode to treatment mode, and come to believe that I may live to be an old lady (or not), I too have to think about “what I am supposed to do with that one day”.  

So far (touch everything wooden in the vicinity) I have not been completely incapacitated by treatment.  I am increasingly fatigued – the steroids I am on keep me awake at night and I need to sleep during the day.  I have ‘chemo brain’ meaning that I don’t have the concentration, clarity and stamina necessary to complete projects, but I can walk, read, cook, write, even tidy if I have to (although I fear the house will not get Marie Kondo’d now or ever).  The voice is back, just a whisper, telling me I’m lazy, I could do more.

Right now, it’s relatively easy to answer.  The most productive, ‘successful’ thing I can do is everything I can to make treatment as successful as possible whilst limiting the suffering involved.  Right now, sleeping 4 hours during the day is productive if that’s what I need to heal, spending 3 and a half hours in the hospital trying to find the b & b (bladder and bowel) ‘sweet spot’ is productive if that’s what it takes to limit radiation damage.  Writing is productive if it helps me make sense of what is happening to me and keeps my brain active.  Putting on make up and spending time choosing what to wear is productive if it makes me feel good.

But was it productive to get involved in a fight over sexism and unconscious bias in my industry?  I felt I had a duty to do so, and I think it was the right thing to do.  I don’t want to withdraw from life, to feel that my life has shrunk to my cancer,  but this fight has left me feeling sad and angry and I have lost at least one friendship as a result.  Was it a good use of my limited energy?  Perhaps not, but if no-one speaks out, nothing changes.  I have a niece and step daughters growing up in a world where white male privilege is alive and well.

I feel I need to use this opening and this time, to once and for clarity on what it means for me to be productive, to be ‘successful’ once I get beyond treatment and am able to either pick up my life just as it was, with the same priorities, or maybe to change them.  Right now I am working with an idea I read about recently which is to think about being ‘deliberate’ so that everything I am doing has intention and meaning and I’m not just floating through the days.

What not to eat

Being diagnosed with cancer has changed how I think about almost every facet of my life.  It’s a bit like the old fashioned kaleidoscope I had as a kid – one twist and all the pieces fall into a completely new pattern.  So it has been with me and food over the last few weeks.

As for most women, my relationship with food has been a life long dance between pleasure and denial.  I love eating it, cooking it, shopping for it, reading about it, thinking about it, but since I was a slightly pudgy teenager, regardless of what my weight has actually been, I have rarely thought of myself as anything other than fat.  Like most women, I have spent most of my adult life limiting and denying myself foods that I love.   Over the years, I have gradually reached some kind of equilibrium but I still harbour the feeling that life would be better if I was just a couple of kilos lighter.    When my cancer was growing but undetected, I was miserable about the weight that I was putting on and berated myself for getting fat and lazy.  When I had my surgery and 6 kgs magically melted away, I revelled in feeling light and slim again.

Generally I try to follow Michael Pollan’s advice – eat food, not too much, mainly plants.  I cook nearly all our food from scratch, I rarely eat junk or processed food.  I try to minimise sugar (although Whittakers chocolate is a regular evening treat), I eat lots of veggies (cooked and raw) and fruit, nuts and seeds, full fat dairy.  I try to eat organic when I can,  limit red meat and eat fish a couple of times a week.  I cut right back on alcohol earlier this year (before I was diagnosed) and I also managed to kick my longstanding Diet Coke habit.  My diet is (or was)  pretty good.  But with a cancer diagnosis comes lots of well intended advice about what to eat and not eat, and when you throw pelvic radiation into the mix,  the whole subject starts to get a little fraught.

Conventional medicine doesn’t have a lot to say on cancer nutrition beyond the usual advice to eat healthily.  Many people on chemo suffer from nausea, and changes to their tastes mean that eating enough can be a problem – even water can have a horrible metallic twang for some people.  Chemotherapy floods the system with toxic chemicals and radiation kills and damages cells, so good nutrition and hydration is vital to help the body cope with the toxic load and heal the damage.  The effects are cumulative. The longer my body can stay on top of the treatment,  the fewer and less intense the side effects I will feel. I’m trying to avoid eating or drinking anything that will create more work for my body despite being told that a glass or two of wine each night is okay, and I can have ice-cream for breakfast if that’s what I feel like.  Having said that I am allowing myself to eat for pleasure and comfort – mainly creamy things it seems, chicken in white wine, macaroni cheese, cheesecake as a post chemo treat.

Five mornings a week, I need to be able to turn up for radiation treatment with an empty bowel.  Radiation changes bowel behaviour, and so do some of the anti nausea drugs I am taking.  I need to avoid developing diarrhoea, and becoming dehydrated and ideally I want to avoid having to take any additional medication.  Picking my way through this minefield means trying to eat just enough of the right kind of fibre.  I am supposed to avoid acidic foods (citrus, tomatoes),  spicy foods, anything that causes gas (fermented foods, lentils, pulses, broccoli, spinach, salad), excess roughage (nuts and seeds, fruit and veg with skins/stalks, wholegrains).   This cuts a veritable swathe through my normal healthy diet.

The further complicating factor is that cancer is essentially an immune system disease. Cancer cells grow uncontrolled if genes that usually stop accidental cell growth get mutated in the cancer cells.  Everyone of us has these corrupted cells in our bodies at some time, but normally they are recognised and killed.  Problems arise when the immune system fails to recognise the corrupted cells and they begin dividing and multiplying.  At that point, a person will have cancer until every single one of the cancer cells has been destroyed.  Chemo and radiation therapy are the medical equivalent of ‘shock and awe’ – massive, indiscriminate firepower being deployed against fast moving guerilla troops in the hope of knocking them out.

The irony of chemo and radiation therapy is that they devastate the immune system. Because chemotherapy targets fast multiplying cells, it depresses the production of white blood cells in the bone marrow overall.  The pelvis is one of the body’s white blood cell factories, and this is hit in particular by pelvic radiation.  Both chemo and radiation damage the gut wall and the microbiome which is increasingly recognised as a critical part of the immune system.  I am acutely aware of the need to be doing everything I can to build and protect my immune system, whilst being unable to eat many of the foods that would do so.

This all came to a head for me, so to speak, with the green smoothie incident.

TGIF has taken on a new meaning for me.  It’s the last day of the treatment week, I don’t have to take any drugs on a Friday, I can look forward to a couple of days of not thinking about the state of my bowel, I even allow myself a glass or two of my favourite Central Otago Pinot Noir.   Last Friday I decided that a green smoothie before breakfast would be a great way to kick the weekend off.  Into it I put almond milk, spinach, kiwifruit, avocado, vanilla protein powder, turmeric and ginger.  It tasted good, I felt virtuous.

I went to get my blood test (as I have to every Friday) and then I took Alfie for a walk to Churchill Park in Glendowie.   I recently watched a clip of comedian Micky Flanagan called ‘The Shits’.  He describes going to the toilet in Mumbai,  “and with the gentlest of pushes, the world fell out of my arse’.  Suffice to say, standing in the middle of Churchill Park, and with no pushes at all, I had the same feeling. Thankfully Churchill Park is very quiet at 10am on a Friday morning, I could have been standing on St Heliers Bay beach.

I met with my radiation oncologist that afternoon and when she asked how it was going, I told her of the green smoothie effect.  She laughed and said it might be better to leave those until the radiation is finished.

Good advice.

 

 

 

 

 

Monday Monday

Every Monday I have chemo as well as radiation therapy which means a full day at the hospital.  Whereas the radiation takes only minutes (assuming that ‘prep’ has gone to plan), chemo takes about 5 hours.

The drug I’m being given is called cisplatin which is given intravenously, so the first order of business is to get a line in – putting a needle into a vein and then feeding a very fine plastic tube about 2 cms long up into the vein.  If all goes well and I’m properly hydrated, the nurses find a good bouncy vein straight away, but sometimes they need several attempts.  It’s clear that I have no future as an IV drug user.  Apparently my veins have thick walls and lots of valves making them tricky to use. I’ve never had a problem with needles, but I must admit that this is becoming one of the more stressful parts of my experience, my veins are taking a hammering. The  drugs I am taking mean that I bruise more easily and bruises take longer to heal, so my forearms are starting to be a patchwork of yellow and purple.  I am glad that it is winter and I am not having to bare my arms.

Cisplatin is very tough on the kidneys so prior to being hooked up to that bag, they run 2 litres of a magnesium saline solution into me.  The cisplatin itself comes in another litre bag, and once that’s finished, I have a further litre of hydration fluid.  Many trips to the loo ensue. The hydration bags are clear, but the cisplatin bag comes with a forbidding black cover.  I try not to think of it as toxic, and instead to imagine it like a swarm of those little round robot floor cleaners that are busily sweeping every corner of my body cleaning out any rogue cancer cells.  When I am on the radiation table, I am able to vividly visualise a ball of golden light that is radiating out of my abdomen and spreading healing energy through my body, but I struggle to reframe the chemo in the same positive way.  I feel myself resisting it even while having no doubt about the benefit of having it.

The list of potential side effects and the language some people use to describe chemo is intimidating to say the least.  In a recent Guardian article, ‘How to get through chemo’, Decca Whitehead describes it thus – “We feel dead without having actually died.  Chemotherapy strips away every last ounce of vitality or volition until you are left only with the outward appearance of a living person.”  Yeah, thanks for that Decca, perhaps your article would have been more accurately titled ‘How to scare the shit out of someone about to have chemo’.  Her presumption to speak for all chemo patients makes me, possibly a little unreasonably, cross.  This was her experience but it is not everyone’s.

Two chemo cycles and two weeks of radiation in, I feel very far from dead, in fact, I feel more alive than I ever have.  I haven’t had much in the way of side effects yet – fatigue, some changes in bowel habits, some mild tingling in my finger tips, a slight mental fuzziness.  My appetite is good, I’ve had no nausea, no change in taste. My blood tests are showing no drop in white blood cell or platelet counts and my liver and kidney functions are normal.  I look well (amazing what a bit of tinted moisturiser, blusher and mascara can do).  But I am aware of holding my breath,  waiting for the other shoe to drop, hoping that Decca & co were exaggerating, or being drama queens, hoping that I will be one of the lucky ones.

 

An ordinary evening

Our friends Steve and Jodie came over for dinner last night, and to watch the rugby.  For All Black supporters it was an important game – the first in the season, and the first in the post McCaw/Carter era.

I’d made chicken in riesling which we ate with mashed potatoes, broccoli and carrots.  Steve and Jodie made waffles from scratch which we ate with berries, cream and hokey pokey ice-cream.  The boys watched the game, Jodie and I chatted, the girls made the most of a late bed time.  It was a relaxed, ordinary, unremarkable evening.

But when I woke in the night,  I wept.  Not from sadness, but from the sweetness of it.

I seem to be sensing things more intensely, not all the time, but often, as if I’m experiencing some kind of sensual technicolour.   Food tastes more delicious, a linen sheet feels more pleasurable against the skin, a cuddle is more comforting and more primal, a beautiful piece of writing more moving, a smell more evocative.

In the night, it felt as if I was folding these experiences carefully away into a drawer, like pieces of coloured silk in a psychic trousseau, to be taken out, drawn through my fingers and remembered when I need them in the darker days that almost certainly lie ahead.

 

 

 

Feeling the fear

Fear is the ‘plus one’ that cancer brings with it.  It can’t be blanked, it must be dealt with, accommodated somehow. People are quick to say ‘you’ll be fine’, ‘you’ll get through it’, ‘you’re a fighter’, I guess because it makes them feel better, but any cancer diagnosis brings with it the possibility of life cut short.  There is no shortage of survivability stats,  but the stats don’t really help – there are people and stories on both sides of the numbers.

My purest moment of fear (so far) was right back at the beginning, when I got the phone call from the Dr’s surgery.   I’d been expecting the usual positive result from my ultrasound test, the same positive results I’d had from every smear, mammogram, blood test that I’d ever done.  But this one was different.

“The doctor needs to see you urgently”.  I said ‘so, there was a problem with the ultrasound?‘  ‘Yes, but I cannot give you any details over the phone, suffice to say, there is quite a lot the doctor needs to talk through with you.’. We made an appointment, I ended the call, and burst into tears.  I had no defence against the fear that flooded me, it jumped out of nowhere and swallowed me whole.  My mind raced over all that I might be about to lose, all the years I might not have, the children I would not get to see grow up, the places I would never get to travel, the loved ones I would have to say goodbye to, the absolute darkness of it all ending.   Mike and I sometimes like to picture ourselves as one of those old couples you see in camp grounds sitting contentedly outside their motor homes with their mugs of tea and their old dogs.  I thought of us never being that couple.

About 10 years ago, when I had a regular meditation practice,  I spent a week over summer on a silent meditation retreat contemplating death and dying.  This was much to the amusement of some of my friends – why would anyone choose to do that when they could be having a high old time at the beach in the sun?   On a rational level, I knew that we walk beside and step over the abyss every day, most often without noticing or thinking about it.  But suddenly hanging over and looking into its depths,   I knew that I had never come close to feeling how precious life is, and how much I had taken it for granted.

Some ill advised Googling and a sleepless night later, fully convinced that I was suffering from bowel cancer, we met with Dr McCartie.  He told me that the ultrasound had shown two ‘concerning’  growths in my abdomen – a large, mango sized tumour on my right ovary and another slightly smaller in the top left of my uterus. Whilst the ‘c’ word wasn’t mentioned I was told it was unlikely they were both benign and that the endometrial tumour was more concerning because it appeared to have begun to grow into the uterine wall..

I met with my gynaecological oncologist, Dr Tan, three days later.  I was scheduled for surgery and booked in for scans. These were to get a more detailed picture of the tumours we knew about, and to check if there were any others as yet undiscovered e.g. in lungs, liver or bowel.    For some reason, I didn’t particularly worry about the possibility of more tumours, maybe I just never allowed myself to go there.

Dr Tan explained that an important element of diagnosis was to establish whether the tumours were linked (i.e. one a primary and the other a secondary), or synchronous (less likely but a better diagnosis).  She scheduled a hysteroscopy, a minor surgical procedure to get a sample of the endometrial tumour, a procedure she was ultimately unable to perform because the entrance to my uterus was blocked by fibroids.

Between doctor’s visits, scans, blood tests, liaising with health insurers, unwinding work commitments and talking to friends and family, I didn’t have much time to think during this time.  We met with Dr Tan again, she confirmed that the surgery would be an abdominal hysterectomy removing my uterus, ovaries, fallopian tubes, omentum (a fatty layer that surrounds the abdominal organs),  some pelvic lymph nodes (for dissection) and possibly my appendix and to drain fluid from my abdomen.  The tissue would be sent to the lab post surgery and the next stage of treatment based on those findings.   I had a week to wait.

It was a long long week.  It is a very weird feeling to know that you have something growing inside you that could kill you, I felt like Sigourney Weaver in Alien.  I was increasingly physically uncomfortable, my belly distended, unable to sit or stand for long.   Months previously, Mike and I had arranged to go to New Plymouth, on what turned out to be the week-end before my surgery, to climb Mt Taranaki, .  We went ahead with the trip (not the climb)  but by the time we were returning home on Sunday night, I had to lie in the car while Mike went to check us in.

By this stage, I was so desperate to have the surgery over with that I hadn’t really thought of the possible outcomes.  I couldn’t think further than the immediate relief of getting this ‘thing’ out of me.