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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.
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.
It may not be very British but I’m going to talk about money. When this Myeloma journey started, my hubby and I immediately obsessed and worried about money, about what a cancer diagnosis could do to us, and how much treatment would cost. I was disappointed, ashamed and annoyed to discover my NZ life term insurance had recently expired. It had always been a comfort to me that if anything had happened to me, Mum and Dad would get some money which would at least cover any unforeseen expenses such as Mum and Dad coming over for a funeral, funeral costs etc…but no, I let it expire without reviewing it….and the NZ insurance company who had happily taken my money each year had failed to update their systems with my new contact details, ensuring I didn’t receive any notifications of impending expiry. They don’t offer that type of insurance anymore and so to renew, instead of paying an affordable sum, I would have to pay upwards of six times the amount for less coverage, and the fee would increase annually. This would only be an option, of course, if I could get past the health questionnaire. Here’s the first thing, that turned out to be costly.
Next, and we put our hands up, it was our fault, after having health insurance for over ten years, we had just gained quotes for renewal and then decided to defer paying for a new policy for a few months. We surmised, incorrectly, that we were fit and healthy; it could wait until hubby had changed job as health insurance often came in the salary package. If he hadn’t secured the job he wanted within three months, we would take out a separate policy. Murphy’s law, cancer turned up in our lives, within the first month of the period with no cover. We felt embarrassed, upset and kicked ourselves that we had taken this risk; it hit hubby hard. He felt guilt and worry that he may not be able to provide me the treatment and care experience that he wanted for me, without private health insurance options. That wasn’t necessarily the case but we didn’t know that at the time; he felt awful.
I was worried about money and treatment experience, and I knew, we had made the health insurance deferral decision for what seemed the right reason and sound risk assessment at the time; it was, what it was. There was no point worrying about it now. As it turned out, with all things weighed up (including the cost of self-funding; a minimum of £15,000 per month for approximately two years and that did not include stem cell harvest and transplant procedures), I more than likely would have chosen the NHS trial route anyway (or maybe this is choice bias at work?!) and so this decision would have had minimal impact.
The hidden cost, has turned up when I have tried to get health insurance post diagnosis (you know, for all the things that can happen to me health wise that are not about cancer); not a simple or affordable task by any means. If you have had or are living with cancer, many insurers simply won’t insure you. Too bad, if I get hit by a car crossing the road and break my leg (nothing to do with cancer). This is yet to be resolved. Thank goodness, the NHS is usually fab in emergencies.
More costs turned up, and this was all before getting to day to day living costs that seemed to have quadrupled since cancer arrived. I had just finished a doctorate and as many readers now know, we had planned the trip of a life time with friends to meet in Canada for skiing. A wonderful luxury, saved for and highly anticipated; a fitting reward for all our hard graft over the previous five years. First our flights had to be changed and a new flight purchased, some accommodation and car rental costs forfeited and new ones incurred all to ensure I was back in time for treatment. Next the company we had paid for travel insurance with, over the previous 15 years and with whom I had never claimed, cancelled our policy on hearing of my diagnosis – not just my policy but hubby’s as well!
Trying to find travel insurance when you are newly diagnosed with cancer is not easy. Only a few insurers do it, they ask a whole heap of very personal questions (that I had never anticipated having to answer) but that is not the kicker. The kicker is that instead of paying £120 for a comprehensive travel policy that includes all the sports, the cheapest policy I could find was well over five times as much and gave me considerably less cover. Nice! A real, kick you when you are down, moment. For a few minutes, to myself, I cried and threw my toys out of the pram; how dare they? Don’t they know this situation is hard enough? My holiday has been spoilt. I’ve got cancer! They’re exploiting me. They know I don’t have a choice but to pay their charge or not go on holiday, how cruel can they be? Bast***ds’. Why was I being kicked while down and discriminated against? Obviously, I am not meant to travel when I am living with cancer or recovering, I am contaminated and meant to stay at home, rest and be quiet. Expensive, that’s what it is. I felt hurt and upset. Apart from the cancer, I was well, managing my treatment well and doing everything I could to ensure I would not need to go to hospital or need any extra meds while away (hell, I was even away with a medical expert) yet I was still required to pay a crazy amount for travel insurance. In the end, I paid, putting quality of life over money. I know I was lucky to be able to do this (see post Elk-ibou on the corner of Fox and Cougar).
Health insurance is expensive and hard to get. Travel insurance is expensive and hard to get. What next? Everything. Living with cancer, everything has seemed more expensive. If it hasn’t cost extra, it has usually meant I have had to trade off not incurring an expense with doing/buying something that may be helpful or healthier for me. The books I’ve bought about Cancer and how to survive; the organic food, supplements, the nutrition appointments all to ensure I was doing the best I could do for my body; weekends away that I booked because I worried I would become too ill to travel, anywhere; the glass containers I bought which were ‘safer’ than the plastic we’d lived with for years, the cleaning products I bought to eventually swap out with the brands I was used to buying, the bees wrap instead of cling film, the natural instead of usual skin care, all to avoid harmful toxins, parabens, BPAs and the like; the nutri-bullet and extra cups for the plant food smoothies, the non-dairy milks that are more expensive than milk because I’ve been advised to avoid dairy food for a while; the new clothes, I didn’t want to waste money on but had to buy because my clothes were dropping off my new plant food/chemo’d1 frame; the new, old car (plus insurance, MOT, resident parking permit) that we bought in case I became too ill to get to hospital appointments but had been managing perfectly well without, ‘before cancer’…these have all been costs we would not have had this year or ever, if I hadn’t received my news of Myeloma. If I keep thinking about this topic, there are other costs too but I’ll stop here before this list becomes overwhelming.
Many of these costs may appear non-essential; if there is limited income and children to feed and support, I understand how many people living with cancer may not spend or even have the money to spend on books, blenders and the like. And there it is…the big question, how much does the ability to afford these changes, impact outcomes of; overcoming cancer, managing treatment or at the very least, living the highest quality of life possible?
What a horrible situation to be in, a horrible choice to have to make (if there is a choice, and for a parent particularly); asking themselves, do I spend the money on things that may help me overcome cancer or stay as well as possible, for as long as possible or do I forgo those expenses because we don’t have the money for them or because I don’t want to spend the money spent on me, when there are kids to provide for? In my case, with no kids to consider, I found myself also thinking, I don’t want to waste money because Si still has a life to lead after I’m gone. We have built our assets together so why should we spend all the assets we have on my treatment needs/quality of life preferences now, only for his life after me to be significantly worse off, financially? It’s his life, his money, too.
Ok, so costs are up, some through choice and some through imposition by others. Then there is the whole matter of income. Would working be feasible while getting treatment and was I entitled to any income support? I’d just applied for two great part-time roles to go with the independent projects I was working on. I put the applications on hold. The weekly schedule of hospital appointments, blood tests and Chemo didn’t seem to leave room for work. Working as I had planned to work, seemed impossible. Not knowing how I would cope with Chemo and how much rest I would need also made it difficult to commit to a new job. I didn’t want to let others down and I would need flexibility. I’m not sure I would have hired me in those circumstances.
Costs have gone up and kicker number two; earnings have come down, crashing down. I know some people work while receiving treatment, through preference for the distraction or normality of working. Some people work because they must. Others can’t work through being too ill and rely on income support through disability or illness. The overall equation is simple; less income in, new costs and normal costs doubling, mean less money overall, fewer choices and for most people, more stress and pressure, right at a time when resilience, calm and mental strength are needed.
How do people living with cancer cope? How can I cope? Even the idea that I would need to consider income support played with my sense of self, sense of standing on my own two feet, being independent, contributing and not being a burden. Yes, I know, I can hear some advice now, the support is there for these kind of times, when unforeseen circumstances hit, you’ve paid your taxes for twenty years, you’re entitled to support, take it. It still irks and I’m working through what I can and can’t claim, how much I can and can’t work, whether work is helpful or unhelpful, an option financially or not.
There has been a wee light at the beginning of this cancer cost journey; the small critical illness insurance I did have, was paid out within 10 days without quibble. I am forever grateful for this, for one insurance company’s sensitive, rapid handling of my claim. They made sure they didn’t add any more stress to a very stressful period of wrapping my head around diagnosis, the very opposite response of the travel insurer.
The challenge now is to turn this wee bit of money into considerably more money and find the time, amongst all the treatment, for this whole other project – changing our finances for our new circumstances. I feel so awful for my husband in all of this; he didn’t sign up for his quality of life to be diminished, his wife to be ill and more pressure on him to earn and yet simultaneously be with me at treatments and consultations. We certainly hadn’t included hospitals and medications and thoughts about selling our home, in the design of our near future. Yet, I know in so many ways we are lucky and many people don’t have choices financially or otherwise, in the way that I do, we do. Though sometimes I don’t feel very lucky.
Cancer costs; not just emotionally, physically, spiritually, intimately – it costs financially, in all sorts of directions, I couldn’t have anticipated and know that I am yet to encounter. I’m not yet facing that scary prospect of needing an experimental drug not yet available in the UK or a trip to the USA for a new type of Car-T cell treatment or new transplant. Those do not bear thinking about right now.
Talking about money is hard; it is so often a contentious topic or a trigger for stress. People often have very different views about money and very different relationships with money. It can be hard to find agreement with the ones we love about how money should be earned, spent, saved and valued and that is when life is going well. When illness strikes or circumstances change, it becomes even more important to set aside any fear, vulnerability and embarrassment arising when talking about money. I recommend taking a deep breath and just start talking about it, in a matter of fact manner; your financial mistakes, lessons learned, fears and hopes. One hope I have is that this post helps others talk and listen to conversation about money in a compassionate and non-judgemental way. In cancer journeys, along with other life journeys, agreeing how to move forward financially is important and warrants open honesty. This will help money worries and any negative impact on recovery and treatment outcomes for the person living with cancer and their loved ones to be minimised.
1Chemo’d (my new word, do you like it? Or I could just say ‘fried’ but I like Chemo’d better, more self-explanatory I hope)
Editing: Isobel S
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.