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