Category: Psychology for Cancer
February 6th, 2018 by Janine
A year ago, test results confirmed the specialist suspicions; I have terminal cancer, Multiple Myeloma. There is no cure. A year ago. Already. The last year has flown by. Three 2017 dates are now seared into my mind; January 30th, February 10th and my 48th Birthday.
A whirlwind of the new; hospital visits, medical terms and interventions, a community of haematologists, nurses, and Macmillan, a new language of cancer, psychology for self, learning, crying, toughing it out. Some days I said everything was fine, It’s OK that a hash was made of my cannula or I was waiting over three hours, again. Other days, I said ouch or OMG or Sh*t, that hurt, get me someone else please, you have not found a vein, this drip is not working, you don’t seem to be following protocol. I found and used my voice.
Every day I have appreciated the NHS, the team, the help, the efficacy and efficiency of Nurse M, A, and L and others M, J and J; their smiles, their hellos, the added lengths they have gone to and extras they have sent my way, a mask when I’ve needed it, a blanket, a ‘let me know if you need anything’, to ensure I felt kindness, cared for, human, me, Janine.
I’ve had a year of being on the other side of the badge. It’s not been me with the NHS credentials around my neck; they have had them. I walk the hospital halls that are so familiar but I’m not visiting a client, attending a seminar or meeting colleagues. Instead, the appointment is for me, the thick brown file of clinical notes are about me and the graphs and charts on the screen show my body, me, mine.
A year ago. Wow. I still find it hard to fathom. Things are normal but not normal. We get up in the morning. I go to hospital. Hubby goes to work. I rest. I tinker on projects. We go to the gym. We pay bills. Make dinner. Eat it. Watch too much Prime, too much Netflix (Vikings and The Crown, great, aren’t they?!). Life goes on. Yet it is all different, and the same.
I keep saying it ‘a year ago’ because it sounds so strange. It feels like I’ve been managing this for a few months, not a whole year. Last year on my birthday, I was getting second opinions. This year, on my birthday, I will be bunking off one week of Chemo to fly to sun, sand and sea. Thank goodness for that. Can’t wait.
Stress and Urgency
I’ve packed in quality moments in planned more. I’ve had a year of panicking that I may not get the opportunity to see that person again or go to that place. A year of thinking, ‘don’t delay’, get on with, the before I die, I want to, list.
Deep breath. The year has passed. My urge to live life urgently is still there yet the urgency has evolved, is more measured, less reactive, calmer, I think. I hope. I discovered my need to move to Italy (a lifelong dream) is not so intense and possibly not what I want at all. Instead, to be able to travel there frequently and for longer periods of time may suffice and be less stressful (more affordable, more flexible, without the bureaucracy and difficulties of moving to a new country). Or am I compromising too much? Time, I’ve decided to give it a little more time. The right thing will become clear. I’m lucky, I’ll be here tomorrow.
Stress in life is normal, even needed. Now, as my own therapist proposed, the best question is, which stress is worth it? I do still worry (in line with what we currently know about the likely progression of Myeloma) that the next two years will be my best, my healthiest, my most mobile. I do hope to plan and pack in lots of lovely adventures with great friends in 2019 and 2020; ski, sail, bike, travel. Maybe even have a big party or escapade when this 18-month round of Chemo is over. Although, I’m not wishing my months away just yet.
It’s also OK to not go crazy; spend everything I have on adventures or abandon everything I had already planned and put time in to. It’s ok to think I’ll be around for a long time (15 years would beat the odds) to invest in our home, our future, and believe, I will have time to enjoy the benefits of the investment.
Feelings
I feel a bit weird yet I don’t really know how I feel, one year on. A bit unnerved, numb, maybe? Strangely alive at other times. I haven’t really worked it out yet. I wonder if I’ll ever know? What will show up if I let it? Over the next few weeks? Over this entire journey? The new, yet strangely same life of mine, of ours, that now includes and accepts cancer yet is a life, lives, that refuse to be made invisible, small and weak.
A year ago. What happened to you over the last year? Did you grow? Flex? Build resilience? Laugh, love, cry and learn? I hope so (more laughs than cries with luck).
I have.
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Diagnosis, Psychology for Cancer Tagged with: a year ago, Blood Cancer, Bone Cancer, Cancer, Crises and Stress, Myeloma
January 10th, 2018 by Janine
Boo!
Did I change career over the last month of 2017, become a lead actor in a thriller? This thing keeps creeping up from behind me, above me, beside me, from below, yelling BOO! It sends my cortisol levels sky high, makes my heart pound and brain race. I’ll be tidying, reading, sitting, walking down the street, thinking about something or standing in a queue, essentially minding my own business, when WHAAAHHH! There it is.
I recognise it straight away. Sometimes, I even feel it sneaking up on me yet it still scares the living daylights out of me. It’s a shape shifter, a dark cloud and an amour piercing arrow. Either way it makes me gasp, scream, crash, sleep, feel defunct. It pulls the ground out from underneath me, leaves me doubting the paths taken and decisions made that previously seemed acutely clear and necessary. It’s an expert protagonist in this production. It doesn’t take direction. It’s a master tease, dangling hope and snatching it away, reminding me, it’s in control. I’m the newbie on set with no Daniel Day Lewis, Dame Maggie Smith or Christian Bale style mentor to guide me. In the meantime, it picks another corner to hide in and I jump through the roof with the next BOO!
It’s not cancer; it’s fatigue.
Fatigue and Fear
Fatigue, is really getting to me. I don’t get enough sleep. I wake every two hours.
I’m also scared. Though I do know I’m alive!
I’m scared of dying young. I’m scared of missing out. I’m scared of making a poor decision; making my condition worse or accelerating its progress. I’m scared of being a burden. I’m scared of not being enough for my husband, of dragging his life down (all the active plans we had). I’m scared he’ll leave me. I’m scared I’ll ask him to leave me, to go off and find someone else, to have a life with more fun, that doesn’t involve or revolve around a wife living with terminal illness. I’m scared that I don’t and won’t again resemble my sense of who I am; an active, full of life, adventurous person who stands on mountains, travels everywhere, is strong, independent, sensual. I’m plain scared.
Fatigue and fear. I feel them. I get paralysed by them. I think about them. And, yep you know it by now (if you have read my earlier blogs)..…
That’s OK. It’s OK that fatigue and fear do that.
It’s natural. I am living with cancer and have had a gazillion sessions of Chemo during 2017, numerous biopsies, scans, endless blood tests, new challenging experiences and learnt a new language of medical intervention. However, just because I face big challenges or can find myself embroiled in fatigue and fear, doesn’t mean I must let these factors take over this whole blog.
I can do a bit of my own shapeshifting, respond rather than react, slowly little by little unlock the paralysis and pull on a cloak of ‘sitting in all the good things’. I can start now. I’m not ignoring fatigue and fear. I’m not denying their existence. I am denying them their take over plans. I am choosing to focus on something else right now.
Today, this blog is going to be about a huge THANK YOU and more Good News!
THANK YOU.
Belated Merry Christmas and / or Happy Holidays and Happy Happy New Year everyone. Thank you ALL, for reading my blog, for subscribing, for commenting, for sharing it with others who may have an interest in the journey, an interest in what has worked for me so far in managing cancer or an interest in the psychology tips and experience I have incorporated.
Thank you too, for all the wonderful cards, calls, skype time, meals together, moments and best wishes my hubby and I have received over the holidays. They are so appreciated. Every single one.
I firmly believe that all your support and encouragement has contributed to my good news. I have felt loved, helped, contained, hopeful and normal at times when things were far from normal. THANK YOU from the bottom, to the top, of my heart.
THE GOOD NEWS.
My December 2017 results are great. In addition to those mentioned in the previous blog, titled 48, my recent pet scan, bone marrow biopsy and MRI have overall been extremely positive. Of the four lesions I was diagnosed with, only ONE near L5 in my lower back took up glucose during the pet scan, indicating active myeloma. Even this lesion took up significantly LESS glucose than it has done in previous scans. Yeah Baby! How good is that?!
I told those tumours they were wasting their time hanging about and I am taking this as evidence that they have been listening and reassessing their landing page! It is wonderful to read the line in the report that said ‘There are no obvious focal uptake abnormalities in the brain’!! Let’s hope no un-obvious ones decide to make an uninvited guest appearance. They’d be about as welcome as a Harvey Weinstein type right now!
There’s more. The bone marrow biopsy did not show any active Myeloma in my blood or bone and, wait for it…my MRI did not show evidence of any new lesion/tumour. Yee Ha!
I do have one caveat; I have some mild degenerative disc disease and loss of height and hydration between vertebrae in my spine; my back is looking a bit older than my years. It is unlikely that I can particularly do anything to repair damage. I can exercise and ensure by back remains strong, doesn’t antagonise the nerves around L5 and otherwise prevents my degeneration from becoming worse unnecessarily. I will check with the physio about what else, if anything, may be possible. It was also wonderful to read ‘the spinal cord returns a normal signal and the brainstem structure is normal’.
Being pragmatic, I am remembering that Myeloma is tricky. It will come back. It can also be a bit lazy and not show up at times in these results. It can take a rest or be working out how to manifest itself in a new way in my blood and bone. HOWEVER, TODAY…
I’m looking on the bright side of life! (How many of you began singing this line? I can’t help myself)
A helpful position to launch from; I start 18 more months of Chemo this week – the maintenance phase on the clinical trial. Let’s see what this brings.
This is infinitely easier to do with wonderful friends, family, readers, well wishes and my so far ‘beyond amazing’, hubby. I appreciate all of you. I really do.
February 2017
December 2017
THANK YOU.
BRING ON 2018.
Acknowledgements
Images; Hands by M & T. Me (February) by Dad. Me (December) by Me. Thank you image by Tumiso @ Creative Commons (free for commercial use, no attribution required);
© 2018 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Results Tagged with: Biopsy, Cancer, Fatigue, Good News, MRI, Pet Scan, Results, Thank you
October 31st, 2017 by Janine
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;
Meditation
Survive Thrive and “Dawning of the Day” by Aine Minogue
https://youtu.be/MNaqEKtc4Uk?list=PL2a9c2CFCJdlYehE9jochHrjWFMq4AHiu
Mindfulness
https://www.headspace.com
http://franticworld.com/resources/free-meditations-from-mindfulness-for-health/
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Dissolve, meditation, Mindfulness, Myeloma, Nutrition, spine, Tumour
October 18th, 2017 by Janine
Last week and this week have been soooo much better. Less tears. While the black cloud of overwhelm still lurks, I feel calmer, less irritated by everything, and more able to make a healthy choice in the moment. Five minutes, have been my saviour.
I’m no perfect human, no magician. Getting back on track isn’t easy. Getting back on track – isn’t instant. It’s not about righting wrongs overnight. It’s not about becoming superwoman again; getting into action with everything on the ‘crazy to do list’. It’s not about suppressing the negative thoughts, ignoring the fatigue or pretending to be happy.
Last week, my best achievement was deciding to commit. Commit to doing, what I know to do, to lift low mood. Then doing it, for five minutes at a time. Yes, five minutes. Anymore time is a bonus and not mandatory in anyway. A big commitment? Yes!
In the face of depression, difficulty concentrating, fatigue and everything I acknowledged in last week’s blog, yes, making ANY decision, taking ANY action, takes something. Some days, brushing my teeth, having a shower or putting on clean clothes is a commitment. It takes valuing myself. It takes being in the moment, one step at a time.
I’m worth it.
I’m worth investing five minutes, once per day or eventually five minutes, six times a day, to do the things that help and help me, to feel more like me. It’s not easy and I know I go on about it, being compassionate with myself. I try to not buy into my ‘I’m not good enough’ belief, when I don’t manage five minutes one day or I only (loaded unhelpful language) manage five minutes a day. This is super important and the key to keeping the commitment to doing five minute wonders.
On my first day of commitment to five minutes of healthy, helpful actions, I brushed my teeth, washed my face, and got dressed – tick. I got myself up the hill, to my blood test appointment – big tick. The rest of the day passed somehow.
On my second day of commitment of five minutes, I managed to go back on to the website I’d had so many problems with and order the muscle builder protein recommended by the Nutritionist. Its arrived and I’ve tried it. It tastes ok and hopefully will work well for me!
It feels good to get back on track with healthy eating; one step, one five minutes, one day at a time. This doesn’t mean I beat myself up for the sugar filled chocolate bar I had yesterday while at Chemo. It means I patted myself on the back for eating well for the rest of the day, for not eating any more processed/refined sugar all day and for achieving my calorie count target for muscle building.
On my third day of commitment I managed to go to the gym! The gym! I went for five minutes on the cross trainer; I stayed 20 minutes. I was very tired but felt pleased that I had gone. It felt good, to feel pleased, about something. I went for another five minutes, two days ago, stayed 45 minutes and had more energy. I loved the sense of achievement, of being good to myself, doing what I know is important for me to do; build muscle so I can manage the cancer and the treatment as well as possible. It was ok to feel tired later that day. I felt calmer which was a bonus and good to notice.
On another day, for five minutes, I thought about my values, aspirations and those things I used do that gave me pleasure. I looked at whether I had been taking any actions in these areas. I wrote a list and planned some five-minute actions – not all of them for one day; one five-minute action per day. Yoga is near the top of the list. Up until a few months ago, I used to do this, a lot, each week, at home mostly, with the wonderful Adriene on YouTube. Interestingly, five minutes of yoga hasn’t made it back into my world yet. That’s ok. I don’t have to do everything all at once. Maybe next week will be the week I commit to five minutes of yoga, on one day, and then another, and possibly another.
Yesterday, I did something that really makes me feel joy. I had an Italian language lesson. I didn’t worry about whether I was smartly dressed or had make-up on; my teacher doesn’t care. She cares more about whether I am having a chance, making the time, to listen to Italian every day; she doesn’t make me wrong when I haven’t. I loved it. I felt genuine pleasure when getting something right and even when I got something wrong and understood why. I have learned Italian on and off for years (more off in recent years as academic work took over) and it feels great to be doing something that is so important to me. This was a powerful step forward in lifting my mood. Now I can plan five minutes of listening and Italian language practice every day. It doesn’t have to be more. Seriously, a five-minute commitment works wonders and is much easier to contemplate than an hour! If the hour of practice comes at some stage, well that, is simply a bonus. If I don’t do the five minutes every day that’s ok; every day that I do it, is a good day.
Overwhelm still hovers. By the end of last week, I noticed I taken on too much. I tried to allow time for rest, quiet, peace yet the time in between five minutes of healthy action didn’t always or often, feel restorative. Planning five minutes of deep progressive muscle relaxation is now on the list. Sitting outside for five minutes and deep breathing is also on the list. The list doesn’t have to rule the show; it’s just a tool to remind me of possibilities for five minute wonders. Things to try that I know have worked well in the past or may work well now and in the future, if I give them a go and commit for FIVE minutes!
A fine balance, this doing versus not doing too much. Time for simply being is important too though when it rolls over into dwelling, rumination and avoiding, it no longer is being. Socialising and avoiding withdrawal from others is super important for lifting low mood. Getting back into the world is key. Five minute excursions outside my house to the local café, newsagent, supermarket, anywhere where I need to navigate around and be with people for five minutes; it all helps me reconnect with the world.
On the flip side, when friends suggest a catch up, getting myself there is really hard some days, especially on those days when I feel like I just want to rest, sleep and keep sleeping. Staying only five minutes might also seem strange but when I frame it like that, telling myself ‘I’m going for 5 minutes’, it helps. Letting my friend know upfront that I hope to stay longer but a short time might be all I can do, is perfectly fine too; good friends understand. Right now, too many commitments each day or on consecutive days is unhelpful; overwhelm can loom large. I’m taking it a little slower than I was, before this patch of overwhelm hit. Now the dark clouds are slowly lifting, I am taking my time with it, giving myself time and space to get back to feeling like me. I try to remember that saying ‘No’ or consciously choosing to NOT ‘do something’ can be a valid action too.
Five-minute actions, being social in a manageable way, doing things that make me feel good, feel pleasure….that’s what I’m working on. Smiling is back on the menu. Five minutes of smiling behaviour can work wonders too. Remember this isn’t about pretending to be happy. This is about your body and mind experiencing a smile: physically, chemically and eventually, emotionally. Right now, it’s a practice, a behaviour, not a spontaneous event. I’d forgotten about the power of smiling behaviour and that’s ok. I’ll do that five-minute wonder, today. In fact, how about now?
Acknowledgements;
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: Behavioural Therapy, Commitment, Depression, Five-minute, Mental Health, Overwhelm, Psychology, Wonders
October 4th, 2017 by Janine
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.
Acknowledgements
Images: Me
Editorial Support: Stephanie Kemp
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Finance and Cost, Psychology for Cancer Tagged with: Compassion, Cost, Depression, Finance, Legacy, Mood, Nutrition, Overwhelm, Psychology
August 22nd, 2017 by Janine
Hooked up
My blood spurts everywhere like a regular Fright Night or Halloween movie. The nurse is trying to put a cannula into each arm, a bloody big cannula, much bigger than my normal (ha ha) Chemo cannula. The nurse is new to this treatment and seriously nervous. Great. I’m not in the mood today. The mood. The mood where I am happy to be part of someone else’s learning curve. I’m just not. Now she’s made a mistake and there is blood everywhere. My blood. My very, very, precious blood.
Another nurse pounces with a clamp and gets everything back under control. For now. Except, I feel sticky. My leggings and legs are spattered with blood. The pillows and bed coverings are no longer pristine white. Stressed, I blurt out, ‘I don’t want to be anyone’s experiment’. The nervous nurse (NN, my nickname for her) looks horrified. She reassures me that I am nobody’s experiment. Her body language and voice sound like she is trying to convince herself that everything is OK. I think ‘I can’t afford to lose any more blood; get me someone who has done this A LOT’. But I don’t say this out loud. I hope it, instead. I calm down a bit and give NN, a smile of, ‘it’s ok’. It’s not OK but I figure I need her to be calm. Everyone makes mistakes. In the grand scheme of Myeloma treatment, this wasn’t a bad one (so long as I don’t end up needing that runaway blood).
I am in the Apheresis unit, finally all wired up (ready for ‘take off’?) to a clever centrifuge machine (very CSI) labelled 3OJO (MOJO with a 3? A machine with 3 times the MOJO?). Anyway, this machine specialises in taking blood out of one arm (Vampire-esq), separating out plasma and stem cells and then giving what remains of my blood, back to me, through the other arm (Angel-like). Genius! my niece would say.
I try to relax. The machine’s sound reminds hubby of ‘‘beedie beedie’ so we nickname it, Twiki, and completely ignore the OJO’s in the end. Do you remember the TV show called Buck Rodgers? Twiki is a silver robot (cute but with unfortunate haircut) known in the show for saying ‘beedie beedie’ to everything. Very effective. I’ll think I’ll use it.
Twiki with a lot of mojo (Stem Cell Collection machine)
All the fancy stuff Twiki monitors
I’m quite intrigued by my blood and its component parts…hanging in a bag next to me is the plasma, a funny yellow colour and next to it, slowly, salmon pink (apparently, that’s a good colour) stem cells appear. Also on the line in bags are saline (isn’t it always?) and an anti-coagulant. My lips begin to tingle strangely and I feel a bit faint. I let the nurses know. They have warned me this can happen. My calcium level is ramped up and I’m lowered down a bit in the bed. A song pops in to my head…Blood, Blood, Glorious Blood…There’s nothing quite like it…My Glorious Blood.
Boredom kicks in for hubby soon after arrival, I’m not very talkative today. I can’t sleep because to help collection along I am required to pump the stress ball, all day, only taking breaks for a few minutes every 10-15 minutes. Hubby checks out all the bells, whistles and knobs on Twiki and marginally resists touching them (knobs after all) and is now entertaining himself by dancing on the spot. I’m trying to work out which music he’s listening to because he occasionally is singing out loud, unintentionally I think, and boy his lyrics are dubious! The nurses and I catch a look and laugh. Glad he’s got a day job! Though I’ve secretly always loved his dance moves. I still can’t work out which songs he is listening too. Turns out he’s immersed himself in 70s and 80s and he’s running through Hall and Oates hits (would never have guessed). We share headphones and have a laugh with the past. Today is turning into a retro day.
I arrived at 8.30am and it’s now 5pm and I too, am very bored; so ready to be out of here. I’m waiting for lab results to come back and say they’ve taken enough stem cells. For the last four days, I’ve had G-CSF injections that stimulate the stem cells to move out of my bone marrow and into my blood so Twiki can collect them. This is preferential to the other option of having them collected directly from the marrow (painful, long, more chance of complications, I suspect).
The injections have some seriously weird side effects; they cause pain from inside my bones (ironically similarly to the way Myeloma does…there are so many ironies with this overall treatment process, seemingly making things worse in order to make things better!). At random points, shots of pain would pulse from my rib cage or my pelvis, take my breath away and stop me in my tracks. It would usually be gone within 5-10 minutes and then be back again 10 minutes later or half an hour later or whenever it decided!
Lab results this morning told me the injections had ‘done their thang’ and the detectable level of stem cells in my blood (CD34+ test) was well over the count required to go ahead with Twiki’s collection manoeuvres. Thank goodness. The collection target is 7 million stem cells per kilogram of body weight and I hope it can be done in one hit, today. The results come back and they are good but I still need to rock back up tomorrow (and take another injection). They have collected 5 million. A few more are needed. Hubby and I walk home slowly. I feel shattered.
I’m baaackk! The next morning is a funny affair, no more escaping blood and instead a new approach. Yesterday’s senior nurse seemed to be cautious in approach, going slowly and setting things up so blood clotting was avoided. Today’s senior nurse explains she prefers to deal with problems when they arise and ‘we’re going to go for it’ and monitor everything carefully. Funny, I thought coming in two days in a row for the same treatment would ‘be the same’; a standardised process. I hadn’t factored in the human element and the nurses’ different strategies. Today’s target is 3 million stem cells per kg of body weight so info is plugged into Twiki and I lie back and ?? think of England? More like think ‘please please collect everything needed quickly’. It’s an all-day affair again. My potassium and calcium levels need propping up so I go home with extra meds to add to my ever-growing list.
The call comes through an hour later; they’ve collected another 5 million. Excellent that’s 10 million stem cells altogether. They’re sent off for cryopreservation (storage in liquid nitrogen at some crazy temperature, −196°C). I’m relieved. Maybe that’s enough for three transplants in the future. Maybe I’ll live longer thanks to these. If that’s the case then this last week has been a tiny investment; completely worthwhile.
Turns out from discussions with my clinician later that three transplants are not routinely given at the moment and there is no evidence supporting their benefit. Instead, the transplant team would usually spilt the 10 million stem cells gathered into two larger lots, for each of the two transplants. Supposedly there have been some benefits found for higher amounts of stem cells being used per transplant.
Oh well, you never know. By the time, I need the second one maybe they won’t need as many cells after all and I can eek out another transplant. Or my transplants will be so successful I won’t need a third one. Or it will be what it will be, completely in line with current evidence and practice. I’ll worry about that when it happens.
As part of the clinical trial I am on, I’ve been randomised to another four months of chemo (Carfilzomib, Cyclosphamide and Dexamethazone, half the Dex dose than in the previous four months) rather than an immediate transplant. I don’t need to worry about the transplant details right now unless something goes a bit wrong and the Myeloma comes back with a vengeance sooner rather than later (after all it is always going to come back). I crash for two days (the cat loves it) and feel really shattered for the week.
Post collection rest
The good news about my Myeloma is that its presence in my body after the first four months of Chemo has dropped; the IgG kappa paraprotein level is down to 6g/l after being as high as 42g/l. It’s not quite the 100% response rate I was hoping for but it is damn good. It is not usual for this rate to rise again for a year. I’ll have regular tests and jump on it if it decides to buck the trend.
I’m a bit low in mood and I think this is mainly due to low potassium and not knowing what the next phase of treatment is. Dealing with uncertainty is tough and coping well with it, ebbs and flows. That’s normal. I have talked about this in previous blog posts. I’m also nervous (my turn). I have a pet-ct scan coming up this week. Will the radioactive sugar stuff sent into my body find new lesions in my bone marrow, new weak spots or confirm that the treatment has worked brilliantly so far?
Maybe it is a good time to explore my relationship with illness and health. I can step out of project mode for a moment, round one of treatment has been accomplished. Now, is as good a time as any to face asking myself, in a more structured way, what it means to have incurable cancer, what it means to be ill. Which factors, which thoughts, beliefs, feelings and sensations are influencing my health behaviour, my coping…and not coping?
Psychology
One established psychological and behavioural model for explaining how we think about, respond to and manage threats to our health is Leventhal’s common sense model of self-regulation of health and illness1. Here are three of the concepts at the heart of the model.
- our perceptions of our illness directly influence our coping strategies, which in turn influence outcomes.
- our perceptions and resulting mental representations of illness and health threats have two parallel processes, a cognitive representation (our beliefs about; our identity, causes, consequences, timeline, coherent understanding and control/curability of our illness) and an emotional representation (our fear, distress, anger, worry, depression, guilt or other affective states). We use these mental representations to make sense of threats to our health.
- we actively engage in problem solving by testing coping strategies (aimed to manage fear from emotions, and danger from cognitions), and checking whether the coping strategies have worked, to help us reach goals (e.g. to overcome cancer, to survive as long as possible, to overcome anger and be the person we wish to present to the world/think ourselves to be despite illness or to be well enough to play with our children every day)
The model is one way of explaining how we go about reducing the tension that arises between holding on and letting go of important values and goals as we come under threat from ill health, disease processes and treatment impact and side effects. Figure1 below shows this in a bit more detail.
I thought I’d use this model to explore my thinking, beliefs, biases and assumptions about my current health. If you are managing pain, chronic illness, cancer or caring for someone who is ill, I hope you find it helpful to ask yourself similar questions. I encourage you to notice the thoughts that pop into your mind without judging them; they may surprise you. When I work with clients who are living with ill health using this model, they often discover something that they had no idea was influencing their sense of self, or making them feel worse or they discover a rule they had imposed on themselves, based on an unchallenged belief about what it means to be unwell or to be going to hospital or taking medication.
Where to start?
I start by asking myself;
what does ‘health’ and ‘being healthy’ mean to me?
what does being ‘ill’, ‘ill health’, ‘being sick’ mean to me?
Do these concepts mean different things when I think about myself versus when I think about others?
What does it mean to be diagnosed with cancer? With Myeloma? What does it mean about me that I have been diagnosed with cancer, with Myeloma? If it was my partner or a stranger with the diagnosis how would the meaning of having cancer/Myeloma be different?
Figure 1. Hagger and Orbell’s (2003) schematic representation of
Leventhal’s (1980) Common Sense Model of Illness (CSM).2
What do I ask next?
I explore a range of questions with myself about the mental representations I have about being unwell and under threat from cancer. While I work through each question and consider my answers, I also explore how my responses make me feel and what I will do to cope with the event and the feeling.
Stimuli
What am I experiencing?
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments)
What do I know about my illness?
Where is my information coming from? (external: medical team, support groups, google, other patients; and internal: physical and mental experiences)
What are my symptoms? (e.g. pain, fatigue, breathlessness)
What is telling me I’m unwell? (test results, pain, reduced mobility, hospital appointments, calls from medical team)
What do I think about where the information is coming from?
Cause
What do I think has caused my illness? Do I think any of it is my fault? Someone else’s fault? How has my illness come about? What do I think about the cause/s?
Consequences
What are the consequences for me, of my being diagnosed with cancer? From being unwell? What will I be able to do and not do? Will my life change? How will my life change? How will my relationships change?
What are the consequences for others of my being diagnosed with cancer? From being unwell? How will their life change?
Control /Curable
How much control do I have over what is happening to me? Over being sick? Over getting well?
How much do I think and believe my illness is; curable? able to be overcome? able to be managed well?
What do the consequences of the illness (e.g. likely outcomes, treatments, having to have chemo, a transplant, hospital visits and beyond) mean about who I am? what I am? My capabilities? My sense of being a woman? A daughter? A wife? A lover? An academic? A clinician? An exercise bunny? A coffee lover? Looking at all the aspects of my sense of self what does being ill, having cancer mean for each of those and who I am? No change? A change? For better? For worse?
Timeline
How long will I be ill? Will any changes and consequences be temporary? permanent? If my life changes will I be able to change it back once I am well or coping with the illness? Will it be the same as before?
Emotions
In addition to any coping strategies captured while gathering responses to the questions above…
How do I feel overall, right now, today?
How do I feel about being unwell? How do I feel about having cancer? How do I feel about each aspect above; the causes? The consequences? My sense of self? The controllability? Curability? How long I’ll be unwell? How do I feel about each of these? How do I feel about my thoughts and beliefs about each of these?
Coping strategies
In addition to any coping strategies captured while gathering responses to the questions above…
How will I cope? What am I trying? What makes me feel better? Feel worse?
What will I do? What will I avoid doing? Will I ask for help? From who and where will I ask for help? What will I practice thinking? Not thinking about? Where will I put my energy? What will I focus on? Avoid focussing on?
What emotions will I allow myself to express? Are there any that I am not happy to express? Why?
Appraisal of coping so far
What has worked well so far? What helped the coping strategy to work well? What hasn’t worked well? How did it not work well? What were the outcomes?
What do I want to change, try next, no longer try?
Working through these questions and using this type of model is challenging to do alone and isn’t something that is likely to be done and dusted in one sitting or even one day. It may take time to make the enquiry of yourself and find your answers. Notice the answers that pop into your thoughts, into your head. The answers may be scary sometimes, difficult to acknowledge or leave you feeling upset and distressed.
It is important to be kind to yourself during this enquiry. Its ok to take breaks. Its ok to feel distressed after noticing the answers. It’s a good idea to do something nice for yourself after working through these questions. These are difficult questions for anyone to look at, let alone anyone who is living with ill health or a life-threatening health concern.
Remember the aims of making the enquiry is to
- understand how we are making sense of our own health, ill health, diagnosis and health journey
- notice the factors influencing both our coping strategies and our appraisals of the outcomes from our chosen methods of coping.
- identify coping strategies that are likely to be most useful (complement our treatment and enhance our behaviour and management of illness, Myeloma) and drop the strategies that don’t work so well
Ultimately, by bringing our mental representations into our consciousness, our awareness, we may be able to pause and challenge some of them, more easily accept others, and create and foster new helpful health representations.
Many patients perceive they can stand extreme toxic Chemo therapy when they also hope and feel that it may result in a cure.3 There is no cure for Myeloma so how do Myeloma patients, how do I, stomach Chemotherapy? Do I stomach it because I hope it buys me time for living and time for a cure to be found, or buys me less pain, less discomfort, more quality of life? How am I managing fear control and danger control? What are my representations of illness? How vulnerable am I? How motivated am I to take self-protective steps? How easily accessible is my motivation? When is it easy, when is it difficult, for me to do the right things, to look after myself, adhere to medical advice, and adhere to the other complimentary advice I have chosen to follow?
Watch this space – I’ll post my answers over the next week or so to give you an idea of what this type of enquiry might look like…and then I’ll talk about what you might do with knowing your answers – how bringing the answers into your consciousness can help us to better manage the challenges that face us, illness based or otherwise.
Right now, I need a break so I only have one answer for you…
Beedie Beedie.
References
1 Leventhal, H., Meyer, D. and Nerenz, D. (1980). The common sense model of illness danger. In: Rachman, S. (Ed.), Medical psychology, Vol. 2. pp. 7–30. Pergamon, New York.
https://www.academia.edu/259452/The_Common_Sense_Representation_of_Illness_Danger
2 Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and health, 18(2), 141-184.
https://www.researchgate.net/publication/250571403_A_Meta-Analytic_Review_of_the_Common-Sense_Model_of_Illness_Representations
3 Cameron, L. D., & Leventhal, H. (Eds.). (2003). The self-regulation of health and illness behaviour. psychology press.
https://books.google.co.uk/books?hl=en&lr=&id=P3UoIuANmrIC&oi=fnd&pg=PR8&dq=The+self-regulation+of+health+and+illness+behaviour.+psychology+press.&ots=ARDdFKnVmY&sig=hU9R0fsNauKIs04RB3iezy-yAyA#v=onepage&q&f=false
Posted in Myeloma Treatment, Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: Apheresis, Cancer, Clinical Trial, Fatigue, Harvest, Myeloma, Para Protein, Psychology, Randomisation, Stem Cell Collection, Therapy, Transplant
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)
Acknowledgements:
Editing: Isobel S
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Finance and Cost, Psychology for Cancer Tagged with: Cancer, Hidden Costs, honest, Money, Myeloma, open, Talk, Treatment
June 13th, 2017 by Janine
I have learned a lot about generosity over the last few months. Generosity is something I now realise I have made difficult for others at times and I have not always felt comfortable, when in receipt of it. Generosity can be a strange thing. It can feel like receiving a compliment: pleasant, appreciated yet also sometimes awkward. Awkwardness can depend on how often or intensely delivered the compliment is, and how much I believe it is well intentioned, genuine or even believable. Most often, generosity, offers for help, people taking the initiative to think about someone’s needs and meet them without asking, is very much appreciated and immensely supportive and loving.
Other times though, over-generosity is experienced. This is generosity where what I might be saying about my desire or needs isn’t heard, or is heard but ignored in some way. It can feel disrespectful and invalidating, and take away my independence. I can then be left with conflicted feelings of guilt for not being appreciative enough and annoyance at not being listened to, or believed, about knowing my own needs better than another. It occurs to me that older adults or people living with learning or physical disabilities may feel like this on a frequent basis. This feeling hasn’t often happened to me yet, though has occurred often enough to finally make me stop and think, about how I might impact others when trying to give or be generous. It has especially made me think about my relationship with my parents and extended family regarding giving. It hasn’t always been easy to work out how to give in a way that meets everyone’s preferences or budgets (so people are not left feeling embarrassed or like they need to match the budget when being generous themselves) and still leave a lovely sense of giving, and an appropriate sense of pleasure and gratitude in the receiver.
My logic about it making sense for me to pay for something, during times when I have earnt more or been on a favourable exchange rate or simply wish to be generous as a way of showing love (like feeding people), doesn’t always fit with others desires to pay their own way, use the monies they have put aside for exactly this type of expenditure and retain control over the product, service, experience and spending for themselves. Ironically too, these are preferences I also value and wish to exert when someone is being overly generous with me. Of course, talking about it honestly is a good remedy and preventative measure; one that will be put to the test in upcoming months as Mum and Dad visit. The last thing I wish them to feel is undermined or disrespected in any way.
Generosity is not all about money or gifts, it can also become too much when it involves doing things for others. Doing things that another person doesn’t want or need, or doing something that only partly fits a person needs, can be difficult to receive. The receiver can find themselves having to manage the other person’s feelings; how to be grateful and appreciative while considering whether anything is said about ‘please don’t do that again’ or ‘that’s so generous and unfortunately I can’t use/eat/keep it’. Instead of feeling helped and supported, the very person the giver wished to support, can be left feeling with ‘another thing to do’, ‘anxious’ or ‘overwhelmed’ and at worse wanting to withdraw from and push away a person or others’ offers of help.
Generosity’s foibles
Studies show that there appear to be many motivational, cognitive, and situational factors that influence helping behaviour and altruism1. Giving and receiving is not as simple as we might think; arousal and emotions are involved. Both givers and receivers don’t always get what they hope for.
Whereas giving a gift out of guilt is linked to the giver feeling more of a connected relationship, receiving a gift, given out of gratitude, is linked to feeling a more connected relationship. Giver and receiver experiences can be very lopsided in each generosity interaction.2
Similarly, to selfishness, too much selflessness may lead to rejection. It can be viewed by receiving others as undesirable, causing discomfort by highlighting gaps in their own virtues or be deemed to be socially rule breaking.3
Summary
Generosity is a curious beast, worthy of reflection and application of open communication to ensure it doesn’t slip over from loving support to being unhelpful and disrespectful. Hopefully my understanding evolves over time and becomes easier, more balanced and my levels of giving become appropriate and intuitive.
Acknowledgements
1 Dovidio, J. F. (1984). Helping behavior and altruism: An empirical and conceptual overview. Advances in experimental social psychology, 17, 361-427.
http://www.sciencedirect.com/science/article/pii/
2 Chan, C., Mogilner, C., & Van Boven, L. (2014). Gratitude, Guilt, and Gift Giving. NA-Advances in Consumer Research Volume 42.
http://acrwebsite.org/volumes/1017574/volumes/v42/NA-42
3 Parks, C. D., & Stone, A. B. (2010). The desire to expel unselfish members from the group. Journal of personality and social psychology, 99(2), 303.
https://www.ncbi.nlm.nih.gov/pubmed/20658845
Editorial Support: Stephanie Kemp
Illustration: Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: arousal, Cancer, emotions, Generosity, Myeloma, Psychology, Receiving Help, Reflection
It happened again today. Someone said the wrong thing. They didn’t mean to. They just didn’t seem to think. In that moment, it seemed that it was important for them to say what they wanted to say, so they said it. Important to them, not me; about them, not me.
I’m sure they didn’t mean to have their words upset me. But they did. A nurse started telling me HER chemo story, uninvited. Maybe she thought I wanted to hear it, after all she went through ‘hers’ seven years ago and she’s still here; that’s something I’d want to hear, right? Wrong. I didn’t want to hear it. I very rarely want to hear others’ stories.
I didn’t want to hear it this morning when I was running later than usual and really looking forward to a much overdue call with one of my best friends, someone who always makes me feel great, even when we have talked through sad stuff or tough stuff or vented or cried together. I didn’t want to hear someone else’s story when I hadn’t asked to know. The nurse looked at me, waiting expectedly for me to ask more about it. I just wanted her to get on with taking my blood so I could get out there and make my call. She looked again. Today, I had no energy to ‘hold her off’ so I obliged. I smiled and she launched in with more detail and things I didn’t really hear, other than the ‘good luck’ at the end. Another thing I don’t always want to hear.
I couldn’t get out of there fast enough. On top of that the needle had hurt this morning; maybe because she was so focussed on offloading her story instead of taking my blood? She didn’t know how her words landed, she probably thought she was doing me a favour and on another day, maybe I would have wanted to hear her and chat away. How could she know?
Scared
I’m scared to write this blog. I think it might be taken the wrong way. Friends, family, blog readers might stop being in touch or think I’m ungrateful for all the contact, well wishes and kindness they have provided to me. Nothing could be farther from the truth. I am so grateful. I’m deeply astonished at the amazing volume, regularity and quality of support, I have received. Although, it hasn’t always been easy to receive it. I have often felt overwhelmed, sometimes smothered and obligated to respond.
There, I said it. Gosh it is hard to say in my head, let alone see it in black and white. I feel instantly guilty…and yet, honest. When I started this blog journey, I said I aimed to be real with it and share good, bad, up, down, times. I almost didn’t do that with these feelings as they feel so controversial, so risky, potentially hurtful; the last thing I want to be, ever.
I feel very vulnerable. What if you don’t understand? What if I describe how I have felt at certain times and I lose you; the very people, the very support, that has helped me get this far, that has helped me to feel loved and never alone. What do I do if after reading this, you don’t reach out again? Or don’t want to? Or think of me differently? Or want to reach out and are left not knowing if you should, or what to say?
I do hope you read to the end of this post. I do hope you understand.
Please believe me when I say I am not talking about any one person; I’m not. I’m trying to share the cumulative impact of these interactions and understand my own response to them. I’m trying to share the overall feelings, curious, conflicted, visceral and confusing reactions I have experienced, when people have been in touch, shown they care, tried to help and asked ‘How are you?’.
How are you?
Ahh, those three little words…’How are you?’. Now that I have cancer, the words, the question, feel so loaded, so complicated, with no easy answer. Being asked ‘How are you?’ isn’t helpful to me. Not right now anyway.
How on earth could you know that? It’s not your fault that you have asked me, many times, that very question; it’s a natural question to ask. You couldn’t know, that I am only now observing my reaction to the words, reflecting and working out for myself, that these three words are some of the most unhelpful to hear. Today, I was reminded that my experience and feelings about this, are not unique. Surveys show one of the things people living with cancer find unhelpful is people asking, ‘How are you?’.
Fair
One of the reasons I set up the blog, is so I didn’t have to say the same thing, give the same update, say the same answer to the question ‘How are you?’ to everyone who was kind enough to whatsapp, call, message, facebook, email. I hoped people might head to the blog, get a feel for how I was doing and leave a short comment if they wanted to. In that way, they would let me know what they thought of the blog or let me know they were thinking of me.
This wasn’t fair. It wasn’t fair on you. My hope, expectation, request doesn’t reflect human nature. Everyone has different ways they prefer to do things, different ways of communicating, connecting, showing love, showing kindness. It’s natural to do things your way. It is also fine for me to try and figure out, how, I can make that work for me too.
Please don’t…
Friends, family, strangers, clinicians, all say the ‘wrong’ thing, quite often. You don’t mean to. Most of the time I’m convinced people are well intentioned or at the very least trying to manage their discomfort in the best way they can in the moment. I also know, I have done the very same thing; been well intentioned but said something to someone or offered unsolicited advice that they may have found unhelpful, inappropriate or ignorant. When it has happened to me in the past, such as during an IVF journey, it used to make me angry. Now I’m living with Myeloma, when people say the wrong thing, anger is only one reaction amongst a range of reactions, and the whole communication situation – well, it’s weird.
Sometimes it is easy to let comments, questions and advice go. Other times, most times, communication is fraught. I want to scream; ‘not every cancer is the same’, ‘no one person’s treatment and side effects and best decisions for them are the same’, ‘No, I’m still doing chemo’, ‘ I don’t want to give you a low down on my treatment cycle in the middle of the street or maybe ever’, ‘Read my blog!’. Please don’t tell me about the person you know who has the same cancer as me and who is ‘still going after 20 years’ (I’ve been told by the people who know, clinicians and studies, that I have considerably fewer years left in my life so how is hearing that, going to help me? And my diagnosis came at stage two, was the person you are speaking about diagnosed at stage 1 or pre-stage 1, with smouldering Myeloma? How is that like me? Oh, you don’t know? Then how do you know it is even remotely relevant or interesting to me?
Please ‘don’t tell me you were speaking to a friend and their cousin has Myeloma and you can get me their number if I want’, In fact, please don’t even hint you’ve been talking about me with someone else (because that feels creepy) even though, I get this too, is a natural thing to do….and unless we are in the middle of a discussion and are talking about nutrition and supplements, or even then, please don’t suggest the next fad in ‘cancer cures’ (I’ve done my due diligence and made my choices).
Please don’t say, ‘it’s not your time’. As much as I’d like to believe it too, hearing it makes me feel very strange. On one hand, I want to agree and step into that idea, after all I have already said previously, I was sitting with the idea that my specific Cancer would become a chronic illness rather than terminal in my life time. On the other hand, I get washed with anger and want to say ‘wake up’, ‘get real’, ‘if you can’t accept it, how do you think I feel? How do you think I’ll ever accept it?’ Or ‘I’m accepting it, why can’t you?’
I just wonder what it would be like if a good friend instead said to me, ‘sh@t, x years, that’s a real nasty one, do you fancy talking through how you going to spend those years? What the years will involve treatment wise, how much time that will take up (that you know about now) and what you might want to do when you are not at hospital or having treatment? Do you want some help to work that out? and…’I know you might not know right now or have the energy to think about it but please when you can, say how I can help make the years the best they can be’. This would be helpful, I think. I won’t know until it happens. What I do know is that the conversations I have had, along these lines, with these questions, felt; useful, helpful, hopeful and realistic. Thank you.
I read this back and I fear I sound petty. Does it? The feelings are real, I can’t stop them. Like thoughts, they just show up. What do I do with them? For a short time, I felt less conflicted, less weird, when I realised my feelings are experienced by other people with cancer. Macmillan is working on a media project which will look at the social experiences of people affected by cancer and recently asked, ‘What they are tired of hearing about cancer?’ A flood of responses poured in and were so achingly honest. I was surprised at how many people felt like I did and how many also felt conflicted by their feelings. My heart poured out for them because I ‘got it’; then I remembered I was one of them. My heart pours out for me too….and then it retreats, curls up in a corner, getting ready for whatever comes next.
Grateful
I’m going to say it again, in case you have forgotten: I love that some of you are taking an interest in Myeloma and taking the time to find out more about it. I don’t expect everyone to do that. I am so grateful for the good intention when people say things or get me a number or offer advice. I am grateful for people wanting me to feel there is hope, that there are things out there that may help me feel better, wanting me to hear of others’ good fortune and hope that I experience the same. I am grateful. However, my gratitude seems to get overshadowed by other experiences; anger, irritation, desperation for quiet, peace, no demands, no messages that require an answer and these are followed by guilt, confusion, being scared. I don’t know what to ask of you, regarding communication. I know my need might change day to day and what is unhelpful in one moment, might be what I crave the next week. I’m scared to feel alone; I risk pushing you away by writing this post.
About me or about you?
Life has been so socially busy since my diagnosis, I have had to laugh. Why wasn’t I going out, meeting up, going away on breaks with friends as much before all of this happened? Why now? Is it because I want to ‘pack in time’ with the great people in my life? ‘Grab it while I can’ and in case, I become so ill that I can’t see my friends? Well yes, that’s part of it though only a small part as I’m not initiating many of the social arrangements at this stage. Do people need a fix of me? Surely not; I’m not that interesting! (I’m not fishing for a compliment here). Do they need to check and see for themselves that I really am OK right now? Do they simply want to show they are there for me? Or do they want to check in with Si, see that he is doing OK, for themselves, and because I asked them to, in the beginning, when all this crazy cancer-ness began.
Or…is the contact all about you? Is it you, the gorgeously caring soul who wants to do the right thing? Or be seen to do the right thing? Or to do, what you think you might like done, if roles were reversed, if you had cancer?. Being vulnerable again and at the risk of losing you, I am going to say that sometimes it feels demanding; “When can we next meet up?”; “Do you want to go away for the weekend?”; “Do you want to go abroad with us?”; “What can I make you?”; “Can I get you something?” Yes, I do want to go abroad, but I can’t fly right now; Yes, I do want to meet up though I have seen you twice in the last month and I need to see others too. I have smaller windows of non-hospital, non-chemo recovery time and less energy than I used to have right now. When I do have time and energy, I want to see all my good friends and family. If I see you, you my good friend, again, who do I not see, and when do I rest?
Or is it conflicting and demanding for me, because I never want to say ‘No’? In case next month, I’m not well enough to be social. I say ‘Yes’ and then get irritated that I can’t find time to rest. In an earlier post, I recommended being social while you can, as connection is good for the soul. I may need to revise this recommendation as not all socialising is helpful, inspiring or a good thing: sometimes choosing rest, quiet, alone time is important too. Also, I don’t want to miss out on experiences, so if you suggest a meet up (in the UK) to go and do something new or go somewhere new to do something fun, then I would love to say ‘Yes’. Rather than demanding, right now those suggestions seem to land differently; they feel nourishing, a chance to maximise quality of life.
What is helpful?
What is helpful communication wise? I’m not exactly sure yet. I think being in touch (please don’t stop being in touch!) but let me know how YOU are doing…rather than asking about me. I am having to focus so much on myself right now, my health, my hospital appointments, my food intake, water intake, my mental health, on an hour to hour basis, that it is so so so lovely to hear YOUR news, even a snippet, an up, a down, both or simply letting me know a ‘is what it is’ in your life, is great.
Selfishness
So…here’s another question / dilemma that has been whizzing around in my head, ‘ What level of selfishness is acceptable in a person living with cancer?’. Is it a different level for those living without cancer, major illness, other major challenge? How much selfishness is the right amount? How selfish am I allowed to be? What is my selfishness allowed to look like? Is it selfish, to want a fair amount of space, alone time, no sadness from others, people to be decisive and direct, to not have my time wasted (remember, its short and precious)?
Is it selfish to not answer messages that have questions in them, any question, and particularly ‘how are you?’ because it feels like a demand, something someone needs from me. Is this whole post selfish? Am I a selfish person? Have I always been selfish? Is selfish different from self-focussed? Is it ok for me to be self-focussed right now? What is that allowed to look like? What is acceptable? Should I care? Yes. I’d stop being me, if I stopped caring what impact I was having on others. Whizzing around……
Psychology: Ready
There are helpful psychology theories and practices that I can apply to help myself with this. I’m not ready to do that right now. Readiness is crucial in psychology. Seeking help is often a first sign of readiness, though even then, someone can still need time to become ready to explore difficult feelings or be willing to make changes in line with their goals. I haven’t sought help from myself yet. As I consider it now, briefly, two main ideas cross my mind; compassion for me – my feelings are normal and valid and, no-one can ‘make’ me feel a certain way. When I hear something unhelpful, I may react with a range of feeling and thoughts. I still have control; I can still choose what I focus on, choose my lasting reaction and choose how my day is impacted by what I hear. More about this in another post. I’m still ‘in the experience’ right now and not quite ready to seek help.
Please remember
I’m strong and I’m not.
I’m working out what is helpful and unhelpful. I don’t expect you to know. Its ok to ask.
I need space. I still need you.
I’m scared how you will feel when you read this post but I can’t control your feelings and how you choose to react; they’re your feelings, your choices.
I do hope you choose to stay in touch.
Resources that might help you to know what people with cancer find helpful and unhelpful
BBC: Things not to say to someone with cancer. A great little video. http://bbc.in/2kK4Wst
Acknowledgements:
Si, A, S and J who encourage me to be me every step of the way.
Image (sleeping me): B
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: Cancer, communication, grateful, helpful, Myeloma, Psychology, ready, say, scared, unhelpful
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:
- Nutrition
- Chemicals/Toxins
- Mobile Phone / Technology
- Mindfulness and Meditation
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?
‘Why Me?’
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.
A reality.
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’?
Yet…..
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?!
Regret?
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.
Acknowledgements:
World Cancer Research Fund International
http://www.wcrf.org/int/cancer-facts-figures/data-cancer-frequency-country
http://www.wcrf.org/int/cancer-facts-figures/comparing-more-less-developed-countries
World Health Organisation
http://www.who.int/nmh/countries/en/
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.
Posted in Myeloma Treatment, Nutrition for Cancer, Psychology for Cancer Tagged with: Cancer, Cause, Change, Choice, Control, Lifestyle, Mobile, Myeloma, Nutrition, Terrain, Treatment, Why Me