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Dr L turned to his colleague and said, ‘for someone with Myeloma, Janine’s immune system is a Schwarzenegger’. Hey Arnie, you are now a metaphor for my health status. Who’d have thought?! It sounds so positive and I am very grateful that my precious physical self is coping so well with the toxicity of Chemo. I notice too that I get a little hung up on the ‘for someone with Myeloma’ phrase though more about that in the next post. Now, I want to talk about my relationship with my body. It has become a bit confused.
Can I share a secret? I liked it when cancer, chemo and a diet change caused me to lose weight. I like being closer to 60kg than 70kg. I like how slim and less pear shaped my legs look. I like being size 10 and for a few weeks, size 8. All my life, I have valued being slim, strived for it. I’m not obsessive. I don’t over exercise or starve myself or think about it constantly. Even when I put on two stone from IVF treatment: I hated it but didn’t panic. The weight had context. Once we stopped IVF treatments, I lost a stone quickly and then worked on chipping away at the rest. I like cake. I binge occasionally (or did before this new eating regime). Who doesn’t when there is a pack of dark chocolate hob nobs in the house and the hormones are taking over? I would say I’m weight and health conscious with no extremes.
I’ve never liked my arms: they’re too big. Well, apart from the time I sanded every spindle on a stair case by hand: my arms were toned, like Madonna’s or Geri Halliwell’s. I thought my arms looked great after that. It didn’t last long. Finding tops and elegant shirts to fit my arms has always been a hassle. The welcomed side effect from cancer, chemo and clean eating has been the slightly thinner arms and shirts fitting, for once. I don’t really want to give that up yet…
I find myself struggling. I’m in a tussle inside my head. Too much weight and muscle loss is not healthy, not helpful and goes against Dr L’s advice. He explained that he had noticed that people with Myeloma who keep up with the gym and have some muscle reserve seem to manage the chemo better. I do want to live as long and as well as I can. Yet I find myself loving my new size. I bought a pair of boyfriend jeans a few months into treatment, laughing with a wave of pleasure when I discovered I could fit into a size 10 only to find they slipped off a month later and I’d lost even more weight. Now what do I wear? Nothing in my wardrobe fits!!
At that point, 61kg, it did get a bit worrying. My face was looking drawn. My rib cage and spinal vertebrae were a too visible. I promised Dr L that I wouldn’t let my weight fall further. I expanded my food repertoire slightly (good quality bacon, goats cheese, sourdough toast occasionally) and started the weight training.
Back at the gym, I felt good and waves of relief from feeling stronger. I’d become so weak. I was asking hubby to open jars and water bottles for me and lift anything. This does not fit with my independent and equality philosophy. Yet, I dislike how quickly my leg and arm muscles grow. When my weight started to rise slowly I would find it hard to like what I saw in the mirror. I know it may seem silly in others’ minds. Intellectually, I know I look ‘normal’, ‘healthy’ and would still look heathy even if I did put on weight (I’m fortunate to be tall). Except, somehow it feels like a tug of war in my brain – Janine, don’t put on more bulk, you look good as you are (now size 10-12) versus Janine, you need more muscle and strength to manage Chemo effectively, get yourself to the gym.
For more years than I care to think about, I have gone to buy clothes and come back disillusioned when I have needed that elusive size 13 or 15. It seems crazy to have the same problem at a lower size (now 9 or 11) and with the added complication of my size constantly changing. I can’t afford and wouldn’t want to invest in new sets of clothing every few months yet as my weight goes up and down on chemo, what can I do? Frustrating. I hate being uncomfortable in clothes. I really dislike ill-fitting clothes that don’t help me feel good and enhance how I look in the world. Too loose is as bad as too tight!
Even more annoying, last summer, before diagnosis, I bought some new clothes after ‘making do’ for a few years. Now they are sitting in the wardrobe, barely used as they are far too big. I am in the maintenance phase of treatment, with 3 days rather than six days a month of Chemo and my weight is climbing and fast. I’m 67kg today. Maybe I’ll need those ‘larger’ clothes again in a couple of months. Except, I don’t really want to get any bigger or go back to the size of those clothes again. The 6 days of steroids each month may have something to say about that.
67kg. Nothing to worry about. Yet, I don’t feel good about it. I am beginning to worry that a steroid induced, sharp trajectory up of weight, will set in and hang around for the duration of treatment. There are 16 months to go! That’s a lot of weight gain. That makes me feel sick.
It is also motivating. I’m back on the high veg and protein regime. A few bits of non-clean eating crept in as I celebrated getting through the first 48 (see previous blog) and 9 months of treatment. Then I let the goodies stay, it was Christmas after all. Then I felt sorry for myself with the arrival of two viruses back to back. January came and went, and it’s always the toughest month in UK for me. It’s so often grey, cold, hibernation inducing and all I want to do is eat comfort food!
Oh well, not having the clothes I would like, in the bigger scheme of things, is insignificant really. If I hover around the 65kg mark and I am made of tiny Arnie style muscles, that will be good enough. Viruses and January blues are gone. The revolution is here. February has arrived.
I’m back on track with preventing my body from being a perfect host for cancer. I celebrate a new food focus: FISH. It is easy to do: I am languishing on the beautiful beaches of ANTIGUA for a much-needed holiday. Fresh snapper, mahi and octopus are on the menu. The company is great (hubby and besties), the sun is high, the sea is warm and the forecast is rosy. No time for weight tussles now: The bikini is out and about!
Antigua seascape: Photo by me
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
I am vegetable. Literally. I am consuming so many of them and have lost weight (under 65kg) either through this crazy new diet and/ or the Chemo, that what is left of me has re-constituted itself. I swear it! Green goes in and green comes out (sorry). I collect sunshine where I can. I am drinking all the water I can get. With this combo, I reckon I’m probably embracing photosynthesis, absorbing energy through chlorophyll and soon I will be producing oxygen, instead of consuming it. Really, I am now a green vegetable!
Last week, I talked about the decision to change my terrain. Nutrition was my first target area. There are a multitude of varied opinions about Nutrition for Cancer out there in the world. Some are downright scary. Advice to avoid medical treatment and ‘cure’ yourself by changing nutrition, is frankly, dangerous for many individuals and their individual cancer journey. Other advice, such as all fruit is great, can also be spurious; grapefruit is known to mess with chemotherapy.
The people you might think would know about this field, be trained in this field, are not! When first diagnosed, I asked my specialist Myeloma team, “What can I do to help?”, “What should I eat?” I was keen to explore how could I change my diet so that my body;
Their answer shocked me, sort of. “They didn’t know” and explained, “We don’t receive training in Nutrition”. This was disappointing. I needed advice.
Partners in Nutrition
I felt sad and a bit frustrated that my clinical team couldn’t offer anything comprehensive on the topic. On the upside, I knew they were doing the best they could in their speciality area, and were focussed! After my questions, they asked ME what I was doing, which vitamins I was taking and what I was thinking of changing. ‘Thorough of them, to ask’, I thought. However, the discussion felt the wrong way around and left me hanging out there, without the very partners, I thought I would have, on this ‘changing my terrain’ journey. I realised I would have to look elsewhere.
I wanted to be as informed as I could be in Nutrition for Cancer/Myeloma, without inviting so many alternative approaches, that the options became difficult to manage, or difficult to make decisions about. I decided to seek advice from three specialists: the hospital dietician, a Haematologist in the wider medical team who Macmillan recommended, and a private Nutrition Therapist, recommended by a neighbour. This person had trained in Nutrition after her husband was diagnosed with cancer and she had experienced her own health challenges. These three key consultations, the anti-cancer book I have mentioned previously and, two friends with their wealth of nutrition knowledge and experience, seemed more than enough sources of information to start with.
Consultation and Decision
I felt in control (Ha! That word again!) and purposeful. Yes, this whole nutrition thing was yet another project within the whole managing cancer project; it was ‘full on’ but it also felt good. I was doing something to help myself, rather than everything happening to me.
The consultations were very different and all very helpful. While there were some mixed messages, often I was able to double check key points learned from one with another and hear another rationale about why something should be left on or off the menu. Ultimately, I very much appreciated everyone’s efforts and time, especially where it was given for free and I felt informed enough to make my own choice.
The Hospital Dietician (free 30 minute call): Helpful, friendly, most concerned about my weight going in the right direction; not going into free fall. Recommended more of the standard balanced diet we generally hear about in the media, eating without denial and to feel good, and, cake was probably a good thing for getting the calories in. Didn’t seem to have any specific cancer related advice though it may be that I felt fairly informed by the time I spoke with her.
The Haematologist with a personal interest in Nutrition for Cancer (free 60 min call): Very helpful and passionate, advocated a ‘Plant food’ and ‘some dairy’ only approach. Coffee, if needed, should be good quality and better to avoid decaf coffee altogether as it is often processed with chemicals. No sugar though sugar substitutes are OK (e.g. agave, stevia) but not artificial sweeteners. Recommended several interesting books (included in the links page on this blog).
The Private Nutrition Therapist, C, known for her work with people living with cancer and undergoing Chemo (paid for 60-minute face to face, plus two 30-minute skype follow ups): Easy and professional to work with, also passionate and overall, clear about her recommendations and rationale. Adapted her style knowing I like the science and evidence, which I greatly appreciated. Advocated a full comprehensive plan of dietary and lifestyle changes tailored to my specific needs.
I went with the last option as my base approach. I had found my partner in nutrition for Janine’s Myeloma. A relief washed over me. Phew. I wasn’t going to have to work this out alone.
Now, I am a vegetable.
New way of eating
The new eating plan aimed to support my body through the induction treatment, the initial four to five-months of Chemo. Things may become more flexible later (I hope so!) to support specific medical procedures like a stem cell transplant, remission or a maintenance phase. For now, a complete revamp was proposed.
Please note that I have not provided the nutritionist therapist’s full plan in detail or my own adaptations to it, in full detail, as my regime is specific to me and my circumstances. It may not be appropriate for everyone.
For the last three months, I have stuck as closely as possible to:
Plus, the medical team directive:
Let’s pause and think about that for a moment. I love food. Food is always a big part of any travelling I do and I take a LOT of pleasure from food. This was going to be painful – no gorgeous oozy mozzarella (dairy), no Ham; prosciutto or Parma (processed), no fresh ravioli (usually with ricotta so dairy and gluten), no Greek yoghurt (dairy) which I adore. For the Kiwi British comfort eater – also painful – no toast and butter (gluten and dairy and sugar; in the bread!), no bacon (processed; I so miss this!), no cheese melts, no crisps (processed and often with sugar and less than ideal oils – corn syrup, vegetable oil, rapeseed oil), no fish and chips (‘bad’ oil, gluten), no pies (I’d just found a great provider in Borough market and started getting them as the odd treat, not anymore), no cake (aaargh!), no dark chocolate hobnobs (gluten, sugar, dairy), no chocolate (!!!), no flat whites, no cappuccino, (no coffee for me, the coffee addict), no standard milk, no champagne, no margaritas, no red wine. No, no, no, to all the yummy things and the vast list of other foods that help make things yummy. No grabbing a sandwich from a café when on the run (majority are processed, have poor quality salt and a ton of added sugar – look out for anything ending in ‘ose’ like dextrose (it’s all sugar). Not only is anything yummy seemingly out, now my whole relationship with food will need to change; I will have to be super prepared before leaving the house and in-house! Sounds like a Mum with kids to feed but I’m not a Mum and one of the benefits of that, up until now, is that I had been able to be more spontaneous over food.
‘Figuring out’ and the challenges
I couldn’t do it. This was going to be too hard. There wasn’t going to be anything left to eat! Especially with the no natural sugar thing. I checked in again with C about whether I really did have to give up natural sugar. I was reminded that Cancer seems to LOVE and I mean LOOOOOOVVVE sugar. We agreed that if I have too have fruit (and I do) I would make it no more than 1-2 pieces a day and ideally only ‘good fruit’ – high in antioxidants and/or low in natural sugars.
Working out what I can eat and trying it out over the last three months has been very, very, time consuming. I wanted to embrace the new plan and do the best that I could do but I did wonder if I would be determined and disciplined enough. Funny how focussed you can get when pain, disability and death loom large.
I felt fortunate that some recommendations landed more lightly and didn’t have the combined bulldozer-tornado effect of others. Over the last ten years, I had considerably reduced my bread consumption to avoid gluten (I had felt bloated and low energy after eating it) though this had been harder to resist lately, with the abundance of gorgeous sourdough loaves on every corner. I haven’t drunk a lot of alcohol either. My average intake has been less than one unit per week for years so this restriction was also easy; only hard when out with friends and celebrating. I had recently cut down my coffee consumption to a maximum of two a day (my Uni colleagues may not believe this!) and I have used lactose free milk with coffee for several years.
I hoped these pre-diagnosis adaptations meant I was off to a good start. I knew getting vegetables in when I don’t overly like many vegetables and often find the ones available in the UK tasteless, was going to be a major hurdle. Unbeknown to me in the early weeks of this new regime, this hurdle was not the greatest nutrition challenge I would face.
Consuming enough calories and slowing my weight loss (never thought I’d say that) has proved to be very difficult. Finding my groove with food, and food routines, and figuring it all out so that it doesn’t take up most of the day, has been a huge journey; one that continues. Eating out and stopping myself from getting excited when seeing something is gluten and dairy free as it is often still full of sugar and off limits has been tough. Seeing blocks of cheese left in my fridge by others, really wanting a piece, that’s been hard too. Even my hubby doesn’t eat cheese so we’d both rather it wasn’t there (now binned but felt wasteful). Finding solutions that work without becoming evangelical about it, or a boring, pain in the arse…well, that’s been hard too.
What DO I eat and do I LIKE it?
Standing at the kitchen bench each morning in the early days; I felt like I needed to do a warm up to get ready for the next three hours ahead, the way you might before heading out to bootcamp, the gym or for a run. Have you ever tried to make sure you get enough food and fluid in, early in the day, so that you;
It takes something. I often feel baby-esq, permanently attached to a water bottle, only putting the bottle down to eat something that usually involves a nut, vegetable, powder or all of them at once.
Can you picture the cliché movie scene where the main actor is using a blender and the stuff that is meant to be blended (usually a lovely red or green colour) ends up all over the actor, walls, and floors? Well, welcome to my world. I have had a few of those moments, and cried. Rushing around when using a Nutri-bullet or Vitamix blender, isn’t recommended. Paying attention is. Trying to do the right thing, get in all the nutrition self-care, and prepping stuff to take with me, before heading off for a day of treatment is hard work. I can feel exhausted before I’ve started. Now after my initial stuff ups and clean ups, my Nutri-bullet is a friend. I thank the Universe for its prowess in whizzing up material in to a consumable form that I otherwise would have avoided like the plague.
I down a bottle of warm water with apple cider vinegar first thing and then get on with washing green veggies (spinach, cavalo nero, kale, cucumber…) acquired at the Sunday morning market. I stuff them in to the Nutri-bullet container, add in a tablespoon of sprouted broccoli powder (elusive stuff, frequently out of stock and gratefully received as if it were gold ingots from my girlfriend who recently hauled it all the way from NZ), add turmeric with black pepper (great anti-inflam), lemon juice, water, coconut water or almond milk, a piece of apple or a plum or ten blueberries and whizz!
I down it quickly, it’s not unpleasant, sometimes it’s even nice, I just find it easier this way. I get full quickly and I risk not getting the whole thing in, if I put it down and say to myself, I’ll come back to it, I do but by then it’s 11pm and I’m trying to finish off the water I’ve also missed and get to bed. I leave an inch of the green stuff in the bottom of the container for round two; the hard-core elements. To this I add psyllium powder, rice protein (like cardboard) or another protein powder (a new addition to try and up the good calories), flaxseeds and any other good for you gook that congeals quickly – whizz well and drink instantly. A tiny bit of pineapple juice can help, if it really tastes naff. Then I usually race up the hill to have a blood test. With a water bottle.
Next I work on my second breakfast. If I don’t try for four meals a day plus snacks I don’t get anywhere near 1800-2000 calories a day and I just keep losing weight. Crazy! Eggs usually, or porridge with nuts or oily fish…essentially some type protein and maybe a few more veg. I seem to live on avocados and rice cakes with sardines in olive oil these days. Lately I have had success making gluten free bread and nut bread so poached and fried eggs (in coconut or avocado oil) have returned with a vengeance and I love them. Slowly I am managing to find or make alternatives to most of the yumminess products I listed above that are either similar enough in taste or texture so that I don’t feel I am missing out. I make my own turmeric and cacao lattes with almond milk, my own nut butter, my own dairy and sugar free mayo. If I fancy something like bacon, I try to figure out what might be closest, like organic ham hock and have a go at cooking that. It was close enough to abate my hankering for a while and I didn’t feel like I was denying myself something I love.
I had sausages this morning – god they were good. It’s very hard to find good quality, gluten, sugar and dairy free sausages that use organic, free ranged meat unless you order a minimum of 5 kilos from a great butcher. I found some today and along with the organic mushrooms and eggs, I was in heaven. See, its not all bad.
Lunches and dinners are not that different from before all of this; they just include more of a psychedelic rainbow of vegetables with the protein. Roast chicken (organic) still on the menu. Yee ha!
The power of ginger
Three ginger tea is also godsend (or Universe-send). It has been my personal miracle tonic. When I have felt nauseous from Chemo instead of reaching for the Dom (domperidol), usually, a cup of ginger tea has stopped the nausea in its tracks. I am very grateful for this. I already take enough meds so didn’t want to be taking Dom all of the time too (it’s a three times per day, kind of drug) and one I am probably going to need later, when the going gets even tougher.
I love café and restaurant culture. I don’t go out quite so often anymore, so that I can control what goes in to my body but when I do I tend to choose vegan cafés or those that have egg or gluten free options where possible. Thank goodness London has transformed in this arena over the last five to ten years; it is much easier to find ‘free from’ options now or menus that have gluten free alternatives.
However, it is much much harder to find menus and cafes that have options that are gluten, dairy AND sugar free or that don’t then include a vegetable or rapeseed oil or some nasty unnecessary non-natural additive. Some places like Whole Foods, Deliciously Ella and independent farmers market stall holders are good and expanding their ranges all the time. Although, after going to these places once or twice or when their menu doesn’t change, it can be hard to find as much pleasure in eating out. The ‘healthy’ places are not prolific like the other major café houses so finding them when you need them can be a mission too or require a special trip.
It is also frustrating when going into a place that has set itself up with a healthy eating concept only to discover the alternative milk they have on offer for making flat whites or lattes are brands that include a whole lot of unnecessary sh*t in their product such as unnatural flavouring and sugar. This makes me especially mad when there are other available brands which are simply almonds and water or almonds, water and Himalayan salt or simply coconut milk alone. Yes, me and my gobby (frustrated) mouth. I do usually point this out and ask them to consider other brands. In all fairness most places, especially the smaller independent ones have showed interest in doing just that.
There have been some fantastic upsides to sticking with this plan and coping with its strictness.
The other and most important major benefit that I am choosing to ‘step into’ is that this new way of eating has majorly contributed to how well my body has tolerated Chemo so far and how effective the Chemo has been; helping me to significantly reduce the unwanted para-protein level in my blood after only two of the initial four cycles of Chemotherapy. My clinicians are pleased. I am pleased.
It doesn’t mean I have been a saint and stuck totally faithfully to the plan. I am only human and we have been born and bred on sugar so lets face it, I was never going to kick it completely and easily. Overall, I have been feeling rather virtuous about my avoidance of the stuff and any other nasties but there have been lapses.
In an earlier post, I confessed to an indulgence of coffee and cake on Si’s birthday. I also confessed to savouring a coffee on another day – more about coffee below. The biggest lapse came like a smack in the face and I learnt my lesson. For two days, I fell off the wagon and in particular, allowed dairy, to creep in. Boy, did I pay the price. At both ends. A different shade of green, I ended up in bed for a day and weak for five. My skin went to pack. To recover, my body craved green smoothies and strict eating. It really was a wakeup call about how much better my body had been feeling overall, beforehand, despite the Chemo effects. Dairy has been out, out, out ever since.
Strict versus living
I have recently adjusted my plan to allow for one, occasionally two coffees (weekends) with almond milk per day. I love coffee so much, the smell, the ritual, the taste. As it does have some health benefits, I decided life was too short (ha!) to go without this love. Most importantly, I have learnt to drink it when I stop, pause, and rest, instead of using it to replace food, as a stress release or to ‘keep going’.
Picture my local organic health food shop. It’s a throwback to the heady hippy days of the 70s, where weird looking products on home-made wooden shelves, are caressed by music from a display of vinyl records, lovingly played on an ancient turntable at the back of the shop. This place provides the most divine items, for those times, when I just can’t go without sweet treats, any longer. An amazing gluten free, dairy free, smooth, creamy (from avocado not cream) dark chocolate tart is the star. The trade-off is that alongside the high purity chocolate, it does have some agave in it (a natural sugar substitute). I have had this twice now and thoroughly loved it. I plan to make it myself so I can control the sweet element even further, and use the tiniest amount of rice syrup rather than agave.
Is it worth it?
Well so far, my new eating plan has been in existence for the same amount of time that my test results have been improving. Maybe, just maybe, eating this way, going without some foods I love and embracing new foods and new ways of consuming them, will extend my life. Just maybe, it will extend the quality of my life. At the very least, just maybe, it will enable me to cope well with treatment and avoid common complications; kidney and liver failure.
I am a skinny green vegetable.
Cancer. Don’t eat me.
Illustrations: Sapphire Weerakone.
P.S. Check out the new illustration by Sapphire on my earlier April 2017 post called ‘My Veins Fear Needles!’. It’s fab!
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.