I thought we’d killed them! In fact I had thought they were already dead well before the winter arrived. We looked for them so many times only to be disappointed when we couldn’t see them. I presumed the birds or next door’s cat had made them into a feast. We had stopped feeding them, stopped ensuring the water was clean and had not given them a second thought when the pond froze over.
Yet, here they are. Alive and kicking! More accurately, alive and swimming! And eating! Our fabulous fish, still zooming around in our horse trough from the 1800s; Seville (very orange), Beirut (grey white patches with orange head), and two whose names I can’t even remember! What’s more there’s an extra bod! It seems the fish got the memo about the Covid lockdown and decided to get busy! Now, I need to find a new name for our new addition and rack my brain for the other names. Where on earth were they hiding on all of those occasions we looked for them?
Blue Sky London Day
I am going to add an interpretation to this event in my mind. A helpful, healthy interpretation. We can do that, we humans. Our minds do it all the time. We often add a narrative, meaning or attribution to an event that is negative, unhelpful and unhealthy. When we do, pain and suffering soon follow.
Alternatively, we can also add helpful, wonderful, healthy, inspiring, enjoyable narratives to events, circumstances, thoughts, feelings and sensations. These can help us feel and create pleasure, celebration and hope. I have decided the discovery of Seville, Beirut, Unknowns 1 and 2 and the new boy (maybe it is, maybe it isn’t) are a wonderful symbol of resilience, energy and thriving in a constantly changing environment and when faced with never ending challenges. My darling fish, you are one of my sources of inspiration for 2021.
I too, am resilient, can find energy, thrive and feel alive no matter what challenges me and changes around me. This doesn’t mean I will feel ‘up’ every moment of every day. It doesn’t mean I won’t have the odd tough, emotional, low week. It does mean that I can cope and I have hope. Today, is a beautiful sunny blue sky London day, the fish are alive and I have had some great news about my body.
Undulating caterpillar inching forward to new heights
Long tough road
The horrid month
It has been seven months since I wrote last. Seven months since I came out from under the horrid month in hospital which almost broke me; the month where I had a stem cell transplant, a blood clot in my arm, a dangerous e-coli infection, went bald and could not be supported by an in-person visit from hubby. That was the hardest part.
Seven months since I got home from that experience only to be hit by a c-diff infection. The time has gone so quickly and seems like a life time ago yet also feels like yesterday, raw, significant, a milestone, an awakening. Covid, lockdown, fatigue, pain, overwhelm, slowness, feeling good then feeling shattered, taking on too much then letting somethings go.
The last part of 2020 was a health roller coaster, though mostly without the sharp heights. Instead it’s been more like an undulating caterpillar of three steps forward, two steps back, experiencing loss and frustration about not being able to do as much, or do things now in the way that I used to be able to do them (and may never be able to again) before embracing acceptance and commitment. In recent months I have finally focussed on what I can do, in the way I can do things, and consequently felt healthier, happier and positive about moving in the right direction.
I finally learned that slow can be good. Really learned it. Fully experienced it instead of deep down thinking it doesn’t really apply to me, only to others. I’ve let go of ‘not being good enough’; put a stop to ‘I need to be hard on myself otherwise I won’t perform well, succeed, be respected, be ok, be enough’. I reminded myself of my catch phrase for last year ‘consistency’ and how the long game even if played slowly, gently, is a good, healthy, empowering game to play.
Another of life’s games has been restored: work. I love it. I love being the clinical psychologist I worked so hard to be. I love making an authentic positive difference to other people, helping them learn about themselves, find their answers, try out their new skills, manage their mental health and become their own mental health coach. I love helping people identify what matters most to them, know their values, embody their values daily and use their values to guide their decisions, make and deepen connections, grow and feel whole. Even writing this paragraph feels inspiring.
Skin reaction to UTI infection – immune system out of kilter
Yet another infection
Yes it’s been tough and it continues to be tough. My immune system has needed constant boosts of growth injections to help it stand on its own two feet. Some people with Myeloma recover steadily after their transplant, some are back to work and exercise within three months. I wasn’t. I couldn’t. My body simply couldn’t cope. It needed more time, more nurturing, more monitoring, more help. I needed more help and that’s OK.
Then, once again as I sat safely in the hands of my amazing medical team and began to improve in the early days of January 2021, WHAM, another infection. Another ‘we need to admit you to hospital’. Sigh. This was a bummer.
My mind began racing. I can’t do this again. I don’t want to be in hospital, without hubby, during covid, when the risk of coronavirus is high. I’ll fall apart if I have stay in hospital again…don’t make stupid mistakes, if the oncologist says you should be in hospital, you should go…I don’t want to, it means another PICC line, another chance of a clot, more chances of infection, more chances of low mood and slower recovery. Please, please, please, let there be another way. Is the Universe giving me another test? Really? Don’t I deserve a break? My mind went to all the old negative unhelpful places.
Resigned and ready for hospital admission
Back to hospital
Eventually I came up for air, paused, took a breath and calmed my mind down. I nutted things out with hubby and made a plan. I negotiated with the medical team that I would medicate and monitor at home, have two weekly check-ups and admit myself if I got worse. Relieved I didn’t have to go in, I packed my bags just in case, cried and begged my body to get better. It didn’t. It got worse. Fever, weight loss, no appetite, no energy and high temperatures. Then arrival of a reactive inflammatory skin condition, joint pain, swollen ankles, knees and knuckles. Lovely.
Never by halves Janino. It wasn’t covid, when covid was all the rage and one I wouldn’t wish on anyone. This hiccup was all caused by a bloody annoying urinary tract infection (UTI) that most of us would send packing to the hills. Instead with my immunocompromised self, it stuck around, dug in and said ‘hey, you are not getting rid of me that easily’ and what’s more ‘I am going to wreak havoc all over your body’. I can almost hear the UTI saying, ‘Yeeha, playtime!’
I dressed in clothes to get straight into a hospital bed and reluctantly presented myself for admission at the Haematology Assessment Unit. Six hours later I was home. Yeah. Home. How cool was that!! The team had made another plan. They propped me up with some different medication, organised a dermatology and rheumatology consultation, and knowing how I felt about admission, had reviewed and decided I would recover better and be at less risk, at home. Here I was back in my safe place again. Relieved. Pleased. Begging my body to improve and begging the bugs to stop bringing my life to a screaming halt over and over again.
Birthday meal in Lockdown – delicious! Look at those curls!
Walking the talk: I asked for help
The UTI is gone, the skin flare has gone and I’m on a four week steroid cycle for the reactive arthritis that seems to have stemmed from my immune system going into overdrive trying to get rid of the nasties. I even have a full head of thick hair, albeit an inch all over and bouncy curls I’ve never had before. I’ll take it. The arthritis may be challenging, it’s hard to walk because of remaining swelling and pain in my ankles and knees. It’s virtually impossible to turn anything or pick up anything up with my left wrist but right now I’m feeling good. It’s been a good two weeks.
I’ve even re-learned that it is OK to ask for help; help to put my shoes on, cut up food, unscrew the top on a jar, get dressed, stand up, get to appointments, get in and out of a car. It pushed all my buttons about needing to be independent, not being a burden, and telling myself I just need to get on with it. I learned to ask for support and for asking and receiving support, to be ok.
Catching hubby laughing at me for trying to help myself and my being too stubborn to ask him for help did both annoy me and make me laugh; at myself and him. He knew that gently teasing me was exactly what I needed and often need to help me keep perspective. I can cope with this residual pain and swelling. It will pass. Something else will show up and I’ll deal with that too. In the meantime, the news from my clinic review today made today an even better day.
Hey body – I hope you know how loved you are
The good news
My immune system is BACK.
My neutrophils are now up over 5 after struggling to stay over 1. My body is generating lovely new cells and my platelets are now over 180. My paraprotein levels are stable coming in between 4 and 6 for the last three months. Whoop whoop!!
What’s more, I have tolerated my first Covid vaccine (Pfizer) well, with no side effects. I can now have all of my other childhood vaccinations re-done. My body is ready. Thank you, body! I knew you’d show up. Well most days I did. Occasionally I wondered if you were going to say it is too much hard work but here you are, showing up and stepping up. Thank you!
I am so so grateful because I love life. I still have a lot to do and more importantly, I still have a lot of person to BE. I can BE and do that now thanks to you, body. Once fully jabbed with all the renewed protection, I will be much safer out and about in the community again. The vaccination timing is looking good for alignment to when UK lockdown eases. Yippee.
I am now on six weekly monitoring instead of having to go up to hospital for one thing or another at least once per week. This is thrilling! This is normal life!!
Latest science about Metabolic Pathways in Multiple Myeloma
Cellular Metabolic Pathways in Multiple Myeloma
I am becoming super geeky about Myeloma and have begun reading loads of journal articles about the metabolic pathways, processes, genes and enzymes that cause, maintain and promote Myeloma relapse. I wasn’t ready for this level of biochemical detail before but now I seem to be able to absorb the info and am fascinated by it. The brain fog has lifted! In case you fancy a bit of geeky biochem cancer guff – check out this link
I am learning about how to shut down the pathways, fuel and microenvironment that Myeloma likes the best – predominantly glycolysis and glutaminolysis. This new in-depth knowledge feels empowering, gives me a sense of control, is already helping inform my decisions about further treatment and identify changes and renewed commitments to my preferred lifestyle choices. A new chapter is opening in my life, health and Myeloma journey. I am working on creating the best integrated health care plan that I can.
I am still being realistic. I haven’t forgotten the stats. I am still in my 5th year of a 7-10 year prognosis. For now, nothing is off the table; the traditional medical route, off-label drugs, supplements (specifically targeted to block pathways), Jane McLelland’s Metro Map and How to Starve Cancer approach, Chris Woollams Canceractive approach, meditation, exercise, oxygen therapy. I feel full of hope for thriving, for a high quality life, a long life and I feel good.
I am alive and kicking.
All there is to do now is to be and sit in this feeling, let it cover me like a cloak or envelope me like an exceptionally warm, comfy hoodie, which seems to be all I wear these days!
P.s. Tookie – while I do love you, keep your paws out of our pond!
Me and hubby
Rebecca Campbell – Goldfish; Erik Karitis – Caterpillar; Jon Tyson – Good news; Kristine Wook – Vaccine Teddy Bear; Brandi Ibrao – I hope you know how loved you are; Chewy – black and white cat
© 2021 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Blood Clots, C-diff, Covid, E.Coli, Fatigue, Glutaminolysis, Glycolysis, Metabolic Pathways, Pain, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Blood Cancer, Bone Cancer, Cancer, Crises and Stress, Fatigue, Immune, Immunosuppressed, Mental Health, Metabolic Pathways, Metabolism, Myeloma, Psychology, Stem Cell Transplant, Tumour Microenvironment
You are a bit of bitch really aren’t you? Very clever. Coronavirus, Covid19 or whatever you are calling yourself, you’ve sent the world in to a tail spin. You’ve made it even harder for those with less and caused loss, grief, fear and stress to many. You’ve caused economic chaos just when the country’s debt was coming under control. Corona1, you have brought the best and the worst out in people. You’ve given the scientists, statos and health analysts a right royal challenge to get their teeth into. I hate you. I don’t want to die from Covid19, Cancer already has that sewn up. I’m cool with that. You on the other hand are ruining my precious life. Now bugger off.
Coronavirus Care Bear
Every week when I’ve gone to hospital for chemo, had my blood taken and received an injection, I’ve risked catching you! My body perceives such a high threat level that is on edge the whole time I am there. I am antsy when I have no choice but to walk down corridors where physical distancing is impossible. I wear double masks, I wash my hands constantly and in my mind you hover on every surface, everyone’s lips, everyone’s clothes. I cringe with every sneeze and cough heard. My body is so hypervigilant and tense that when I finally get out of the hospital I am thoroughly exhausted.
You, Corona, are a cruel cruel virus. I took time to focus on being as well as I could during my current cancer treatment and to foster as much calm as possible. Huh! Calm is very hard to come by most days thanks to you, let alone on hospital days when it is nigh on impossible to feel relaxed.
I was trying to get my head around you Corona and your ramifications, for my bubble of hubby and me, for my loved ones, when strangers suddenly became very scary entities. Minding my own business in a hospital corridor, a man walked towards me, looked me directly in the eye, shook his head seemingly disapprovingly and then, coughed. He coughed again, purposefully. He looked directly at my face, coughed a third time and then with his hands hurled his cough at me. I was shocked and almost stopped. He threw his head back, laughed, looked at me again and grinned. Then he carried on as if nothing had happened. So too did the person behind him.
It was over in seconds. My thoughts raced – is that it? Corona, does he know you have infected him? Did he want me to get sick? Why? What did I do? Isn’t having cancer enough? This happened the week before official lockdown here in the UK. If it was your idea of a practical joke Corona, you got me. I was worried for weeks, waiting to see if you had landed, were going to take my breath away, make me very very sick or you know, kill me.
Once in lockdown, this incident would be called assault. The man could be found, arrested and charged. I would report it. At the time I didn’t know this and it was the last thing on my mind. I was in shock, kept walking and found myself trying to work out what had just happened and why. I remember feeling and thinking that somehow he had taken offence to my looks or seeming wealth. I had my headphones on and was listening to a podcast, he looked dishevelled and possibly impoverished. Did he think me too wealthy, too fortunate? Well I am fortunate in so many ways however that doesn’t excuse his or anyone’s attempt to cause me harm.
On reflection Corona, I realised there could be a million reasons why he did what he did, none of which might match with my first interpretation. I would never know his rationale so there was no point me thinking about it anymore. Yet somehow, Corona you had made me a target, when I already was one, thanks to cancer. You forced me to think about a whole heap of virus stuff that I really didn’t have a lot of headspace for. Instead of hospital being safe, the place I go to heal, you have made it a very scary destination.
Thanks a bunch Corona.
No more adventuring
Maxed out vulnerability. People living with (or dying with, if its a bad day) Myeloma are in the seriously at risk group. If I followed the full UK guidelines to the letter, for people who need to shield, I wouldn’t be sleeping in the same room as my husband, spending time in the same room as him, cooking and eating with him. I would be alone in a bedroom, only allowed out for bathroom breaks and to use the kitchen separately. That wasn’t go to work. Not unless one of us got the virus or hubby had to go out of the house a lot. You almost stuffed up my home life Corona. You certainly stuffed up my adventuring (two cancelled trips that I was so looking forward to and that would have balanced out being on crappy treatment) . No, you were not going to get it all your own way.
Lockdown hasn’t been all bad. Consistency has been my main word, mantra, possibility, call it what you will. I committed to myself to choose somethings I would do while unable to go out and do them consistently. In fact, you gave me a renewed sense of purpose, a new start line. I checked in with myself, wrote a list of things I wanted to do and began chipping away, doing a little bit of one thing each day until it was complete before moving on to the next task. Thanks to being stuck at home with less outdoor distractions I’m feeling good about lots of little and not so little achievements. Cheers Corona.
Not us (obvs) but cool pic
My new morning routine makes me feel great. I re-established my intake of a litre of water with lemon juice, my herb drink and added in yoga. Hubby and I completed two 30 day yoga programmes and are part way through another with my favourite online teacher Adriene from Austin, Texas. (links at end). My downward dog is the bees knees. My hip flexors on the other hand….are getting there. I’m loving it.
For the first two months I cycled on an indoor bike at least once a week, paced the length of the garden until I got dizzy or had listened to hours of a podcast and worked out with weights. I felt stronger and healthier than I had in an age. I finally submitted two research papers to journals for peer review (core topics: dementia, family involvement, interventions). Another paper I was involved with, was published. Manual client notes from work completed prior to using a record system are now online. My continuing professional development log is up to date. It even contains new entries from the multiple courses I’ve down during lockdown. I’ve enjoyed growing my Acceptance and Commitment Therapy (ACT) skills.
I baked gluten free, natural sugar only, snacks and slices that all turned out to be edible (by me at least). I cooked loads and cleaned like I had never cleaned before. Well that’s not true (some of the end of tenancy flat cleaning days were mammoth) but I cleaned more thoroughly than I had in an age.
Silver Rooster Easter Bonnet
I’ve kept in touch with loads of friends. Had virtual drinks and dinners, coffee catch ups and laughs (especially over the Easter bonnet competition which included a plane and a silver rooster, no less). Had friends drop off yummy treats and delicious fresh fish. Clapped for the NHS and frontline workers. Formed deeper connections with my neighbours through whatsapp about shopping, helping out, puppies, compost, birthdays and more. Learned about tiktok, seen some things about Trump and some other dodgy characters that I never want to see again! Corona you have forced a new world upon me and I will remember the bright spots. Even though….
low day(s) duvet day(s)
You almost got me. My mental health took a hit. I made it to about day 50 when cabin fever hit. Half way through the worst 24 hrs Corona, I discovered my knickers were on inside out. I didn’t care but it did sum up the day.
You are scary but I was over being home. I was desperate to go for a long walk. My right hip was giving me grief and I knew walking would help. In early March, my hip decided to drop and rotate forward (it’s done this before). Joy of joys. You didn’t care Corona. You had your own schedule. Before I could book a physio appointment to feel the relief of alignment you made everyone stop work and close doors. No face to face let alone hands on work was allowed. My body hated you.
My hip got steadily worse. The pain was constant, worse when I sat down or lay on that side. I felt like one of those bobbing dog toys hanging from a car driver’s mirror; up, down, side to side, up down, side to side. I’m surprised hubby didn’t slip me something in a cup of coffee so I just stayed still for a few hours.2
Joyden Woods Walk
Dr B gave me permission to leave the house!! As long as I avoided everyone. He wanted my mental health to be ship shape because the next step of treatment is a tough one. I woke up early. There was no one about. I put my masks on and walked. Walked for an hour. I breathed deeply. It felt so so good. Ha Corona. Take that!
Despite you, the pain in my hip is now improved and I’ve completed another seven months of chemo.3 OK my consistency has gone to pot over the last two weeks but part of me loves that; I’m human after all and needed to rest my painful hands and wrists. Even so Corona, your attempt to disrupt my treatment, health, heart and hope has been futile; I’m ready for the stem cell transplant (SCT).
It does look like I’m going to have to do the SCT alone. Without face to face visits from hubby or friends to make me laugh and just be with me. Corona, you had to have the last word didn’t you? You really are a bitch.
1 I can’t get the chorus from My Sharona (The Knack) out of head so Corona, my nick name for Coronavirus/Covid19 stuck, sorry.
2 Not a joking matter I know.
3 A quick update on this to come in another blog
Great yoga sessions and teacher:
Sarah Kilian – Bear with Mask
Robin Benzrihem – maskonground
Robert Collins – man_woman_dance shape
Mika Baumeister – thinkingmask
Jurien Huggins – duvet
Ashkan Forouzani -stayhome
Anastasiia Chepinska – ClosedCovid
Others – Me & Hubby
© 2020 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma, Covid Tagged with: Cancer, Coronavirus, Covid, Covid19, Lockdown, Mental Health, Virus, Yoga
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?
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
Music: Jump Around by House of Pain, Got Moves Like Jagger by Maroon 5, Funky Town Gangsta’s Paradise by Coolio, Gin and Juice by Snoop Dogg, Whatta Man by Salt’N’ Pepa (1994!!!). Many many great tracks from the past, particularly hip hop played at the end of the ski/sightseeing day, on the way down in the gondola, via JWL’s phone and with her knowing all the lyrics – seriously impressive or an affliction as she calls it!
No Chemo, No Hospital this week – yee ha!
Mental Health – Nourished by great friends, awesome views, fresh mountain air and being away on a holiday with my hubby (our first, over 5 day, non-New Zealand holiday since 2009, much needed).
I do not advocate travelling abroad during induction chemo treatment. A body’s immune system is weakened during chemo and there is a higher risk of infection. However, in my case, there were extenuating circumstances so a trip to Canada was my idea of the perfect accompaniment to my treatment plan!
Missing Out or A Dream Realised?
Standing on top of a mountain at Banff and Lake Louise had been a dream of mine for many, many years. I had the good fortune to go to Vancouver, Whistler and Blackcomb in 2003 and absolutely loved the experience; the only thing missing at the time was my new lover Mr H, who I had left behind in London. So, as soon as was possible, we planned another trip.
In 2009, a great bunch of old and new friends gathered from all over the world in Meribel, France for a week of skiing. We had a blast. We’d always talked about doing a repeat; State side or in Canada. I had planned it once before in 2012/13 and then cancelled. It was an awful time; I felt like I had really let friends down. We were almost ready to book and then for responsible financial reasons we pulled the plug.
That was not going to happen again. So, we waited until we had the funds, then contacted S & J to see if they were keen on joining us in Banff and Lake Louise. They said yes. We set a date. Easy. We put out the ‘all points invitation’ to the 09 ski bunnies and P & G took the bait – they were in! Fabulous! Regretful “can’t come this time” messages flowed from the rest of the peeps; we quickly knew the score. 6 of us, perfect. We booked. We started getting excited. This was my big post doctorate reward. Sure, it was expensive but it was worth it. I even booked premier economy flights on the return for a bit more comfort for our weary post ski bodies. I couldn’t wait.
Then Myeloma struck. Would I have to cancel again? I yelled in my head “I WILL NOT let everyone down again. That is just not me; that’s not how I roll”. Then more quietly to myself, “Ok so let’s get real, girl; you may have to”. One consultant was silent when I explained about our trip of a lifetime and asked, “was there any way we could make treatment work around it please?” I promised not to ski. I stated, “it would be such good mental health” and “It would give me time to catch up and process everything that’s happened since January”. The other consultant was “yes, we can work with that” and pointed out my trip was timed for the non-chemo week of cycle one; “just be back to start cycle two on the 3rd April”. YAY!
THANK YOU, Universe.
The main mission was to make sure I didn’t get any colds or infections right before or while I was away. Dr L wrote me a fantastic letter for obtaining travel insurance which pointed out that I currently did not have any complications and wasn’t go to die on anyone in the next 12 months (take note British Airways and Canada Customs). By the way my extenuating circumstances are that I’m young, fit and healthy with no kidney or otherwise damage despite having Myeloma. If the opposite was true, I think travel abroad would have been foolhardy, and unfair to the clinical team trying to help me get better.
After eight hours of wearing double masks (my ears were a bit sore by the end of the flight) and tight leg compressors to prevent deep vein thrombosis, being grilled by Canadian customs who reacted to my mask, and three times interwove asking me when we were leaving into the conversation (presumably to check I wasn’t coming in to their country to seek treatment), I made it to Canada with Simon.
Being on top of the world, breathing in the air, the views, the company– it was like nothing else. I even coped with not skiing though it looked amazing; good base, snow overnight most nights, gorgeous sunny and high sky days and the slopes were not busy at all compared to European pistes! Oh well, next time. Bring on remission.
“Caribou, Caribou” was the cry from J. “Look out of your window!”. Si and I raced to our balcony and watched four Caribou saunter down Fox street before turning into Cougar Street. (I love the street names in Banff; Muskrat St, Bear St, Squirrel St, Antelope Lane, Lynx St, Wolf St..). The guys grabbed cameras and went to capture the perfect pic.
They were a beautiful sight and one that couldn’t have been organised better by a Banff tourist board. We discovered later that they were not Caribou at all, but Elk! (Hence the title for this post). They did not seem phased by human beings being on their patch. Fabulous to see. We wondered what other sights we could rack up while being here and hoped for Moose, Wolf and Bear!
The six of us piled into HMS Sasquatch (our nickname for the monster of a vehicle we hired) and headed up to the slopes, went sightseeing to Lake Louise and Two Jack Lake, and took on liquid refreshment at the fabulous Fairmont and Post Hotels. It was like living in a fairy tale or Narnia, snow covered trees, beautiful light, photo opportunities in every direction.
P (obsessed with bears) gave us the report. Apparently just up the road, grizzly number 122 (aka the Boss) had woken from hibernation early. Given last year he munched his way through two other bears and a sheep on waking – I decided to stay well away from him! P on the other hand seemed keen to race to the last known sighting spot!
Tears and Mindful Thoughts
Tears one morning. They’re close to the surface and hit me when I’m least expecting them. They tend to come when someone says something lovely or is particularly kind. This day was a bit different; “I don’t want to die” flashed up, very quickly and passed, but it was there. It was a bit of a shock though gone in a moment. A thought passing through. Like all other thoughts. Coming and going. To be observed. A thought not worthy of attention, of being ‘bought into’, unless it was a thought that served me. I let this thought go. I took a deep breath. Mindful. Grateful.
Everywhere we went in Canada we were met with friendly, helpful people who adore being in the mountains (including a lot of Kiwis and Aussies, many of whom were on their second season). The service was great. Every café had gluten free menus and were more than willing to help meet diet needs.
My decision to travel felt reinforced and validated at every step and no more so than when sitting in the outdoor hot pool at Banff’s Fairmont Palliser spa looking at mountains in all directions, drinking in the fresh air and being pampered to the hilt. I am so glad I went and didn’t do what I would have done in the past; think “I had better ‘be good’, ‘do the right thing’ and if the standard medical guidance is not to go abroad, then ‘I shouldn’t go abroad’.
Knowing I may have a short and finite time on this earth helps with decision making and helps discard some old ways of being and thinking. It has made me check in with whether I am spending my days in the way I wish to spend them and notice who gets to have a say in that. Going to Canada was one of the best decisions I have ever made for my own mental health; taking all the precautions possible to keep myself well, while away, was the necessary and balancing price to pay for that decision. No regrets.
Mental health and mental strength comes in many different forms. Yes, it can be about being stoic, practical and positive in times of crisis. It can also be about taking time to examine what it is we need, in and of this moment, and to consider honestly, what is stopping us from having that need met; a fear, a lack of voice, a habit in the way we think or have always behaved, in similar situations?
It doesn’t matter what we have thought or done in the past; we can always choose to think and behave differently now. Isn’t that what learning life’s lessons is all about? Learn, then do something differently and therefore experience a different result.
Cognitive Behavioural Therapy (CBT) examines links between and cycles of; thoughts, feelings, behaviours and physical sensations. It helps us understand whether the cycles are helpful and serve us well or are unhelpful and no longer serve us, our values, healthy function or goals. CBT strategies such as challenging our thoughts in a constructive, non-judgemental way, help to weaken and break the links between unhelpful thoughts and behaviours. Ultimately this leaves space to create supportive, useful links between thoughts and behaviours. These usually result in more manageable or desirable feelings and better physical sensations.
In this case, I looked at the links between my thoughts about ‘doing the right thing’, how that made me feel (constrained, resentful, mixed with good), my resulting behaviour (to do something I didn’t really want to do or forgo something I had planned for myself i.e. not travel) and the physical sensations (tense). I gently challenged this cycle and the assumptions that underpinned it such as ‘there is only one way’ and ‘you must always go with the first option medical teams advise’.
I thought about what I needed (to go to Canada as planned), weighed up the risks (my otherwise good health with the risk of getting an infection) and I decided I could manage and minimise the likelihood of getting an infection by; caring for myself well, not letting myself get cold, taking all precautions such as double masks when on the plane and in public areas, and not skiing.
I then chose to think and behave differently from the constraints I have applied in the past. While I would normally do things by the book when others in authoritative positions are involved, I decided, this time, that I knew what was best for me, negotiated it with the medical team and reaped the benefits. If I had cancelled and stayed home, I know I would felt disappointment, anger, resentment, bitterness at the Myeloma and sorry for myself.
This way I didn’t experience any of those unwanted, negative feelings.
Instead, I felt intense happiness, empowered and ALIVE, ON TOP OF A MOUNTAIN!
Images and Content: The Fun and Fabulous Ski Bunny Travel Companions; S & J, P & G, & Si.
Illustration (Grizzly): Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Psychology for Cancer Tagged with: Cancer, CBT, Chemotherapy, Cognitive Behavioural Therapy, Mental Health, Myeloma, Psychology, Travel