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Ahoy there…you may think I’ve been on some desert island and that accounts for my lack of communication. You’d be right. I’ve been in a world full of ‘I should blog’ and ‘I am blogging, it’s just that it’s in my head or on a random note, emailed to myself.’ That’s the funny thing about blogs…they’re there all the time yet not always out there….
I don’t know why I’ve put off getting my thoughts and stories out and about. I suspect it’s because I’d like to provide a great psychological tip each time I blog. Sometimes I can’t think of something I haven’t already said or I get tangled up in ’getting it right’. Then I end up not doing anything.
Paralysed. By what? Thinking something may not be good enough? Yet that’s not what this blog is about, at all. It is already enough. I blog when I can and when I do. I blog what I can. No more. No less. It’s helpful to me and hopefully, to one or more of you. It feels creative, a release.
It is what it is. I love that saying. It is so black and white yet YELLS acceptance. Can you visualise that? A phrase exuding and yelling acceptance. I love metaphors. I think I’ll ask my friend Sapphire if she might have a go at sketching this one, if she has time. She either will or won’t: both are fine.
I am doing fine. My mantra from the meditation I enjoy: I am doing fine. I am in my fourth month of the 18-month maintenance cycle of treatment. My results are no better, no worse. I get tired. My feet tingle sometimes painfully with neuropathy. I ache. Sometimes I have trouble concentrating, making decisions or being articulate. Often, I am the opposite. Out and about. On the go. Functioning well. Being me. Alive and living.
I said a very solemn eulogy last week. To my umbrella. My favourite umbrella that has been in the family for 13 years. 13 years! Do you know how unheard of, this is? It hasn’t been left on the bus or on a tube or in a café or lent to someone without ever being returned. It was a miracle of survivorship. It outlived all expectations. Especially with my record for losing things.
I loved that umbrella. It was a deep British green with a Jaguar car logo on it. A strong powerful leaping Jaguar. I love cats and especially big cats like panthers and jaguars (I even follow Jacksonville Jags NFL team since seeing them at Wembley a few years ago) and I have always liked the shape of Jaguar sports cars. This umbrella was perfect for me. It was small, light and a marvel of efficacy. Even the spring mechanism worked well every time.
I was so sad to see it go and I am yet to replace it. Living in England, particularly in Spring does not allow long before full commitment to another umbrella is required. It is of course, raining heavily again today. I wonder, will I channel my wonderful big cat umbrella and outlive expectations?
Who knew an umbrella could have friendship qualities? Always there. Reliable. Helpful. Comforting. Safe. I’ve been known to buy crystals, carry stones in my pocket at times. I wonder what other ‘things’ help others out there with Chronic Illness, Pain or Cancer.
I was sitting in the cinema recently and the lady next to me sneezed. Over and over again. When I’d sat down, I had noticed she had a blanket over her knees and thought nothing of it. After her first sneeze, a thought exploded into my head…oh sh*t, does she have flu? I don’t have a mask. Bugger, my immune system can’t get away from this one. Panic stations. Find a tissue, FAST. Cover my nose and mouth quickly.
I turned my back to her, snuggled into Hubby. I felt sad that a visit to the movies wasn’t straightforward anymore. I tried to focus on the film again. Then I started thinking, What was that like for her, for me to turn my back? Did she care? What did she think? Did she notice at all? If she did notice, was she making incorrect assumptions about why I moved? I hoped she didn’t think I didn’t like her, or feel rejected. All while these thoughts invaded my movie time, I prayed she didn’t sneeze again. She didn’t. She coughed, loudly. I felt angry. How dare she bring her bugs to the cinema. Get real Janino, everyone sneezes and coughs. Sh*t, sh*t and triple sh*t. I buried my head in Hubby’s jumper.
I started debating whether there was any point in turning away, covering my face with the folded tissue, trying to prevent bugs access to me and my vulnerable body? The little blighters get through anyway if they are going to…after all, most bugs are small enough to pierce a basic mask. That’s why I wear two masks whenever I’m on a plane. Picking up bugs, its unavoidable at the end of the day, isn’t it? Getting sick is probably unavoidable too. All I can do right now is keep giving my body the best chance of fighting off infection by eating well, being kind to myself, doing what I know to do to support my body. Accepting I’ll pick up bugs sometimes and focussing on the film is probably more helpful than getting angry and worrying about preventing any imminent attack.
We are under attack, by BREAD!
Did you know that there appears to be a big, big problem with much of the wheat we eat around the world – it is TOXIC! This is crazy, right? Glyphosate (in Roundup !!!) is used by conventional farmers, who spray it on their fields between plantings to reduce weed populations and for drying out grain and bean crops so the yield is higher. Did that sink in? A toxic weed killer is sprayed on much of the wheat that ends up in the bread we eat! What’s more, it has been sprayed on our bread FOR YEARS: bread that most of us have had in some form or another, EVERY day.
I’m so shocked! And angry!! The Netherlands have banned it. France are changing their legislation about it. The UK soil association is trying to get the UK government to do something about it. While the whole debate is becoming highly politicised there is evidence for the toxic cumulative effects on people’s health!!! Check out the articles below.
Frankly, I don’t eat a lot of non-gluten free bread these days anyway but I’m certainly going to try and go for organic only now too. I dont fancy consuming ANYMORE Glyphosate or Roundup! It is so damn hard to avoid toxins in this world! Or to know who / how to trust food producers. It will be so expensive if, to keep ourselves well or prevent disease, we return to buying EVERY food item at a speciality, boutique, or independent provider. Most of us simply can’t afford to do that, or it is impractical, even when we are able to work full time and whether we have cancer or not.
We live in wonderful times. We live in scary times.
I miss my brolly.
Check out these articles
Photo of the new version of my old brolly by http://davitcareditions.blogspot.co.uk/2010/11/jaguar-merchandise.html
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
OK Mr Tumour or more accurately Messrs Tumours. Listen up. Yep, all four of you. You know who you are. You are hanging around unwanted and uninvited. Where do you get off thinking its ok to be dossing about in my body? You’re a greedy bunch, aren’t you? Not contented with one spot, you hunker down in two places in my spine, my shoulder and my sternum. You threaten me with paralysis as you near my spinal cord and grow dark and big. What arrogance! Well, I have some words for you.
I have mindfulness and meditation and you are not going to like them. In fact, I already know you haven’t seen them coming. They have roughed you up a bit with their calm, kind, ease. Aww. Tough. If you can show up unannounced, I sure as hell can unleash mindfulness and meditation on you.
Your resistance is futile. You are already weaker. You can keep trying to hide out, munch on sugars (if I give you any) and try to take over the joint…but I know where you are. Your luck has run out. The Chemo is working. My new diet is working. My NHS medical team is great. I am doing fine. My mindfulness and meditation practice, reminds me this is so. Mindfulness and meditation practice, whether 5 minutes or 35 minutes; it’s getting to you, Mr Tumour (yes you, the large one in my lower spine). I’m talking to you.
YOU are DISSOLVING.
One at a time. Worst, darkest, nastiest first. You are dissolving. I know because I have seen you. My MRI showed me. You are thinner, lighter, dissolving, dying. Don’t feel bad. You are no match for kindness, curiosity, breath, acceptance, listening, powerful visualisation, practice of belief. Belief that my decisions about my treatment have been the right ones for me, that my medical team is the right one for me, the Chemo is the right Chemo for me and that I am doing fine.
My favourite guided meditation reminds me of this.
NOW you are DISSOLVING.
Meditation helps me visualise an all-powerful, protective, transformative, warm, healing light. It wraps up all four of you, Mr Tumour, you and your buddies, letting you know you are not needed. The light heals my body, generates new healthy cells, rids me of you. This same meditation helps me draw energy, power and peace from the Universe, imagine, believe and trust I am in safe hands, doing the best I can do. It is working. You are not running this show or in charge of this gig. I am; with the help and support of mindfulness and meditation.
Mindfulness for sleep. Mindfulness for Cancer. Mindfulness. It helps me to stop. To be. To breathe. To observe. Mindfulness, paying attention, moment to moment, in a kind, curious, non-judgemental way. Not like you, Tumours. You are random, cruel, unnecessary. Yet, thanks to Mindfulness, I accept you. I accept that you are here. I watch you, learn from you, ignore you and listen to you. I accept you have muscled your way in, demanded to be seen, to be heard. With Mindfulness, you don’t get to invade my every moment or even most moments. You don’t get to hurt my sense of who I am. You don’t get to take over. You get to be. Until, you are no longer being.
Listen up Mr Tumour. You are superfluous to requirements. While I accept you are there, I’m just letting you know you can go and take your friends with you. I know you are likely to return in the future; I’m a realist. Right now, you are not needed and not wanted. By the time, you want to make a comeback, I will be stronger than I am now, even more practiced in mindfulness and meditation, and healthier with years of a great low sugar diet behind me. I will have more chemo options and more effective medical solutions at my disposal. I will know more about you, your characteristics and the environment you need to thrive. I won’t provide it. You’ll have to find somewhere else to go or better yet not bother at all. I am ready now. I will be ready in the future.
I might have dark days and dark weeks through this journey Mr Tumour but that is nothing on how uncomfortable I am making things for you. I am not going to fight you. I’m not in a battle. I simply will not be providing the terrain that you want. I see you. You are dissolving. Soon I won’t see you. You are getter weaker. Myeloma may remain but you Mr Tumour are no match for my healing light. You do not have to stick around. Mindfulness and meditation, they’ll remind me why you came and what you can teach me. I won’t forget you. I don’t however, need you. I will watch you dissolve. You can leave now. Thank you.
Three of my favourites;
Survive Thrive and “Dawning of the Day” by Aine Minogue
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Hello Blog. I’ve missed you. I’ve been writing to you, in my head, a lot. There have been many opening paragraphs that have never made it to fingers and keyboard. Today is a beautiful day, helped along immeasurably by clear blue sky. Today is the day I put the last month to bed, put it into the past and leave it there, take out the learning points and not allow past negative events to colour my future.
I really wanted to say I haven’t forgotten you and provide a brief update…a reality check…
Health-wise. I have been good on the Myeloma presence front; it’s still low. I have been knocked for six coping with a compromised immune system. Two viruses back to back, an extended chemo/bronchial style cough, even worse sleep patterns (didn’t think this was possible) and fatigue, weakness and low motivation to do anything…these have left me reeling with a very low mood. I’ve felt like a patient, an invalid, more than ever before in the last three to four weeks. Especially when I end up in bed for days, need to avoid being on public transport and wear masks more often. Concentrating to write seemed like an impossibility. I’m here now.
Despite my low mood and fatigue, I managed to push ahead in small chunks with some of the ‘to do’ list. No wonder I’m overwhelmed. Have you ever felt like your ‘to do’ list doesn’t have any small, mundane admin items on it? Instead it is a long list of huge, life-impacting topics that all require maximum brain power, planning and the ability to make decisions – something that is very, very elusive if you are even slightly depressed.
My list has included (though not exclusively by any means);
Finance. How to finance the next few years, mortgages, budgets, investments, trying to find independent financial advisors, palliative care costs, home care costs…the list goes on).
Clinical Meetings. I’ve been chasing meetings with clinicians to get a fresh, up-to-date view of the realities or at least their best guess on what my next few years will look like; how mobile I’ll be, how much treatment will be needed, whether I can do, plan for, bother costing out, some of the life passion things that are important to me – travel adventures, skiing, swimming, road cycling. Securing these meetings has been a challenge and ongoing for weeks now (still unresolved) all because I want to see the original clinician I met and not my trial lead. Dr L is both a realist and optimist. We have worked together for months now. It feels intensely important to hear up-to-date details from someone else, so that it lands in my head with clarity, so that Hubby and I can be exactly on the same page. This is why I am trying to secure a meeting with Dr B. He was the one who was honest about worst case scenarios, the very real lesions in my spine and possible paralysis if treatment was not started. I need to hear it again; where I am and where I’m not, what I must do. I need pointers on how to live. Do I maximise the next two years assuming they are my best or plan pensions and assume I’ll live a lot longer and with mobility? Therefore, what will I need to finance? I know Dr B will find this tough – I’m under 50 after all. I really need his help with this.
Work. How to work, earn income, contribute, have energy to work. Figuring out how much I can work, what work should look like so that I can strike a balance between treatment, time for doing things that are healthy, fun and will give best chance of prolonging life expectancy and support good quality of life.
Academia (My Legacy?). I worked on my first paper and was rejected for the second time by one journal. I’m now working out how to revise and resubmit to another journal, getting ready for the all so common rejection again while visualising acceptance. I’m also working on a second paper, one a senior academic in my viva encouraged me to publish.
Nutrition. I lost too much weight. I had to stop my super careful eating. I tried to reintroduce dairy. I felt worse. I stopped the dairy. I couldn’t get enough calories in without eating constantly which is impossible if you want to do anything else in life! I reintroduced the odd treat (good quality bacon and cake once, twice per week). I felt better and worse. I was advised to put on lean muscle and get my weight up. My weight is up to 63.8kg. I feel good that my weight is up and bad that I’ve introduced things that welcome cancer into my terrain again. I feel unable to control things. I have no appetite and then I’m ravenous. I find it hard to do food balance. I want it to be healthy all the way or…I can’t entertain, the ‘not at all’ option, it feels irresponsible. My nutritionist has recommended a medical protein powder, not high in calories but specifically designed to help create lean muscle for people losing weight due to illness. I try to order it. The site won’t let me. I contact them. They don’t get back to me. I cry with frustration. I finally ask the Nutritionist to sort it out. She does. I haven’t had the energy to try again. I will, this week. I need to feel back in control. I miss enjoying food, I used to love it.
Last and by no means least, Parents and Friends. Spending quality time with Mum and Dad; how to do that, when to do that, how to have the energy and good mood for that. Ensuring we don’t feel like flatmates co-existing under the same roof and make sure we make the most of the time we have together – how?. Sounds easy but it’s not. A great, precious, long, hard-to-adjust-to five months (not sure how that happened… and I laugh that Mum and I laugh about that now). Yet as it spins into the last half of their stay, it is quickly feeling like I’ll look back and it will have gone quickly…
Chemo. This crazy, demanding to do list is all with a backdrop of six days of Chemo, recovery days where I have felt worse than on Chemo days, many many days when I have just wanted to hide under the duvet with the cat for company and stay there for weeks.
Low mood. I’m in it. Up to my eyeballs. Depressed. I’ve been resisting it. Resisting acknowledging it but I’m there now. I feel demands on me everywhere, a sure sign of low mood and overwhelm for me. A weekend away with hubby last weekend, staying at a very generous friend’s home near the sea, culminated in a roller coaster ride and frequent mishaps. From misread maps, and ten minute walks turning into a 40-minute wait in the rain and taxi, to random laughs (singing Delilah with a bunch of strangers in a gorgeous restaurant with fabulous view), deep tonic breaths of sea air, cocktails and a feast, before spending Sunday crying uncontrollably (on the train, at a restaurant, in a cab, just standing, sitting, in the shower, trying to put makeup on; I gave up, behind my mask, walking in the street, everywhere, leaking.) I’ve been so withdrawn. Haven’t wanted to be around anyone except hubby. And have not been a fun person to be with when we have been together. Trying to be practical, talk about future, plan, create with him; this just exacerbated difference in wants, needs, timeframes and how difficult these discussions are. Overwhelm took residence. Overwhelmed. I landed. Here. Rock bottom. Time to acknowledge my situation even more than I have already. I have cancer. Its terminal. It’s Sh*t. It has turned my life upside down. It’s created extreme intensity across all areas of my life. It’s ok to be overwhelmed. It’s likely to happen many times over the next few years and I’ll be alright.
Off track. All the things that help overcome and prevent low mood have fallen off. I’ve fallen off the track. It’s time to get back on now. This low mood feeling won’t disappear overnight. I do know what to do. Start small, just start. Compassion. Compassion. Compassion. Work on basics; begin exercising again, for 5 minutes, an hour, then a few times per week. It doesn’t have to be all at once. The mindfulness and meditation have slipped to once per week. Get it back to daily. It can be five minutes, 10 minutes and eventually longer. Put a good sleep routine back in place, get up at the same time, get rid of the mobile from the bedroom, breathe, use progressive muscle relaxation. Order the protein drink. Get some good music back into my life; it’s been missing. Look for the positives.
Today is a good day. There is a blue sky. I’ve just been to the gym. I’m doing fine. To coin the essence of a phrase my fab friends use on their date nights and that they wisely borrowed from Julia Roberts… If I forget to tell you later, I had a great time today.
Editorial Support: Stephanie Kemp
© 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.
Causes, Choices, Control and Change.
Now that I have circumnavigated the first two months of treatment, with a focus on doing what had to be done, I notice the question of ‘Why Me?’ popping into my head more often. I think about causes, choices, control, and change. What caused my Myeloma? Why Myeloma and not another cancer? Did my past choices cause my Cancer? What can I control now? How do I keep control? What should I change about myself? What should I change about my lifestyle? If I make changes, will my prognosis be the same? Will changes really make a difference? Or will I just think changes make a difference? Will I create false hope? If I make a bunch of changes and my cancer gets worse, or remission is short or only the same as every other person with Myeloma, will I feel cheated, get depressed, wish I’d just carried on as normal and not changed anything? Are thinking about causes, control, changes and choices like a mouse going down a tunnel with no cheese? Which are illusions, which are realities?
Ultimately, the question I was asking myself was: “Should I change my terrain?”
The main areas of terrain I was considering were:
Why the focus on these areas of terrain?
I was considering these areas as they made sense to me as possible areas for change. The science, while not based on randomised control trials, is compelling and pointed out in an easy-to-read book called Anti-Cancer, a new way of life by Dr David Servan-Schreiber (who also had cancer).
After all, it is unlikely that there will ever be large swathes of money on offer for randomised control trials (RCTs) about Nutrition for Cancer when Big Pharmaceutical companies are competing for the same pot of money for their new drug… or when the findings from Nutrition trials may potentially show there is no longer a need for an existing drug that makes someone a whole lot of profit right now.
Don’t get me wrong, I am very grateful for Big Pharma, their RCTs and their drugs; they are helping me to kick Myeloma into remission. I am however, a strong advocate for a holistic approach; an informed meld between medical and non-medical models, especially as the West learns to give more open consideration to healing and health strategies that have been used by non-Western cultures for centuries.
Particularly too, as while Cancer effects people of all ages and socio-economic status, it appears to predominantly be…drum roll… a first world country problem. Why is it that the rates of Cancer are very high in some countries (France, Denmark, USA, New Zealand and UK) in comparison to other countries (Japan, India, Oman). Why is it that more developed countries fair worse than less developed? 268 cases of cancer were diagnosed per 100,000 in more developed regions, compared to 148 in less developed regions in 2012, with an exception being the non-melanoma skin cancer rates which were higher for less developed countries. Why do other countries have crazily high rates of people with major illnesses other than cancer, such as heart disease (Turkey, Russia)?
Although diagnosis and recording systems availability and accuracy may influence data, could it be that certain types of stress, food, individualistic societies or combinations of these are also having an impact on cancer rates?
I indulged my ‘Why Me?’ for a short time and asked: “Was it because I had chronic stress for years?” Was it because, before changing career, I had worked in contracts for telcos and banks, with constant tight deadlines, crazy commutes (5 hours a day at one stage) and a feeling of always having too much work and never getting it done? I wondered, did I get cancer because I’d lived on coffee for years, eaten too much chocolate, cake, biscuits, drunk too much alcohol during my twenties (and thirties)? Or was it because I was too analytical, too ‘in my head’, ‘too something’? Was this my path, my destiny? Was I meant to learn something? Be something from this experience? Did I even believe in paths, fate, non-fate?….and so like any normal human ‘bean’, I dwelt for a little while and still do occasionally. And, this IS a tunnel with no cheese. This conversation with myself, doesn’t serve me. I don’t hang out there for long.
We (me, my medical team, the fatalists and non-fatalists in my life) don’t really know the answer to Why Me? When I asked the medical team, if anything I had done, used or consumed, caused the Myeloma, they insisted there is no evidence for links between my list and people getting Myeloma. I rattled off: stressful jobs; caffeine and alcohol; supplements; skin potions and lotions; whacky, at the time, spa treatments; and, multiple surgeries (involving though not exclusively, three knee and a number of IVF related invasions).
It may be something I’ve done or something I haven’t done, something about my biological make up, my vulnerabilities, the years of chronic stress, the coffee or lack of coffee (I went without for a year) or some very specific combination of some, or all of these, in very specific amounts of severity, for a specific duration. Are you noticing the complexity of ‘cause’ here? No one really knows and no one may ever know. There may be some amazing medical breakthrough in two years, 4 months and 6 days, when someone is studying finger surgery and discovers something new about Myeloma, that then leads to a randomised control trial or DNA discovery that may indicate some possible cause of Myeloma.
Let’s face it – right now, what we know is, Myeloma strikes at random and in general, men over 70 years old seem to get struck a little more than most. Until such time, as some crazy discovery is discovered, there isn’t much point me thinking about ‘Why Me’?
I can’t help thinking, if I don’t change something about: how I was living, what I was putting into my body and, how I was thinking, I’ll invite the status quo or a repeat performance. That is, won’t I be inviting Myeloma to return once it is in remission, if I don’t change the terrain in which it developed, ran amok and was diagnosed? This is the possible illusion as today’s reality (medical knowledge) indicates Myeloma always ultimately returns and people living with Myeloma eventually stop responding to treatment (drugs and transplants). However, making changes and choices, help a person to feel in control of their day to day or to feel they have some control over their illness: another illusion? Possibly…but….
What if changing my terrain works?
If I changed my terrain and it didn’t change my prognosis or my response to treatment, I would be disappointed but at least I’d know, I had done the best I could. No regrets. Or would I think, sh*t I should have just had chocolate fudge cake whenever I felt like it, three coffees a day (and thrown in margaritas and champagne regularly) because it probably didn’t make a blind bit of difference?!
But what if it did work? What if I changed my terrain: changed my nutrition; removed my mobile phone from the bedroom; replaced my cleaning products with eco friendly, less toxic ones; used only ‘safe plastic’ or glass to store food; changed my skin care products to chemical free, natural ones; and practiced mindfulness and meditated regularly? What if, after all of these changes my response rate to Chemotherapy was excellent and my remission period was longer than average. Wouldn’t the choices, changes and exerted control be worth it?! SO, what choice do I have, really? How will I know what difference change makes, without making change? If I don’t make all the changes, all at once, don’t I risk missing out on gaining the full benefit, if there is a benefit to be gained?
Causes, Choices, Control and Change – both illusions and realities.
I don’t know the cause of Myeloma. I don’t know if my past choices had any influence over whether I got Myeloma or not. I don’t know if my present and future choices will influence how my Myeloma treatment, prognosis and experience will play out. The only thing I do know, is that I can choose to change and making changes may help me to feel in control. Taking control and making changes may have a positive impact on my lifetime outcome and my experience of the cancer journey or at the very least it may help me to feel some semblance of lack of regret.
Psychology – Choices.
What I also know (though it can be easy to forget this) is that I can always choose to review my choices regularly and change them. No one is stuck with a choice. It might feel like it yet we make dozens of choices every minute of the day – which direction in which to move, what to say, to eat or not eat if we have food, where to look. We can keep choosing even about the big-ticket items in our life. Just because we take one path doesn’t mean we can’t, pause, reflect, review and make another choice or reaffirm the choice we have made.
For example, each day for the last six weeks, I chose not to have coffee. Now, I’m going to get one, and savour it. You might say, well if you were a smoker trying to quit smoking, a choice of having one cigarette may be a poor choice. I might choose to agree. Alternatively, I might choose another tack and say that the smoker trying to give up who finds his/herself having one cigarette, could choose to not ‘beat their-self up over it’; they could choose to recommit to their goal of giving up and choose in each minute, to not have a cigarette. Better yet, they could also choose to make a positive healthy, non-cigarette involving choice, about what to do and where to place their attention. In other words, I would encourage positive choices that serve them and their goals.
Now relate this to Chemo and Changing My Terrain. Two months ago, I chose to start Chemo. Tomorrow, I might choose to stop. I could. I might. Right now, I have reviewed my choice and I am happy with my choice to do Chemo and be in a clinical trial. It doesn’t mean I can’t choose differently tomorrow, if I so wish. Let’s take a breather now; more about choices and attention later. Hmmmm, smell that coffee.
World Cancer Research Fund International
World Health Organisation
Editorial help (any errors are solely my own): Simon Hayward and Belinda Marment
Illustration: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.