Category: Psychology for Cancer

Did you miss me?

The leaves I’m leaning over right now are the same colour as the vomit I’ve donated into the drain beside them.  I laugh quietly, internally.  Why am I thinking about leaves? Colours? Vomit? Why am I not even slightly anxious about the strangers watching me, possibly worrying about me, wondering if I’m ok or if they should or need to do anything to help me…or, in this post covid world, maybe they’re thinking about how to stay safe FROM me. 

What do you think when you see someone unwell? Do you stay calm, slip into crisis management mode and think about helping?  Do you get scared, wondering oh no, does she have it, have covid?  Is she contagious?  Is this some new horrible virus, the next pandemic?  Both are normal reactions as is somewhere in between though the calm crisis management response is at least a little abnormal, a little wonderful, admirable and inspiring.

I’m not thinking about any of that, I’m noticing all the beautiful autumn colours of the leaves as they are squashed up against the sides of the drain and my chemo sickness slides down the grill over the top of them, beside them, disappearing into the deepest darkest London drain below.  Wonder where it ends up? Does it pass under your house, my house? Or seep out into the underworld of this, vast, amazing city. 

Gingerly, I unfold from my forward bend after what feels like half an hour.  Only minutes have passed.  I am relieved to see the open taxi door, the taxi driver’s patience as he waits for me to be ok enough to get back into the car.  He hasn’t driven off; he doesn’t seem worried about me soiling his car, ruining his day.  Thank goodness I splashed out on an exec car.  I notice the slightly weird angle the car was holding in the street; the driver’s, unruffled (so grateful for that) rapid response (oh so very VERY grateful for that) as he had stopped the car when I had managed to whisper firmly stop now please, I’m going to be sick.

Shaky, trembling, feverish and nauseous, I did feel slightly better; certainly better than I had done all morning.  I’d run late for a meeting, and then literally run to try and make it on time, only to find the person I was connecting with was sick too and had not bothered to tell his colleagues I was coming in.  In the end, after breakfast on the house, getting something into my stomach to absorb the swathes of medication I’d downed and after a hopeful meeting with his apologetic colleague I felt safe again, listened to, cared about.  I decided I had chosen the right venue for my upcoming shindig after all.  The day wasn’t a complete disaster, in fact, so far most things had gone well.

Looking forward to being home and resting on the couch in front of the tv for the rest of the day, I crept back into the taxi, thanked the driver for his serenity and fluid driving skills, leant against the window and closed my eyes.  I noticed how far I’d come, how I simply did not get embarrassed easily anymore, that feeling embarrassed, apologetic somehow, felt like a complete waste of my very precious time, energy and effort.   I reminded myself embarrassment IS a valid feeling like all other feelings.  Even though I wished we never had to experience embarrassment or shame.  Those emotions crippled me in my early life and at various times throughout my teens, twenties and thirties.  I had done anything to avoid embarrassment; the discomfort of being noticed in an unwanted way, of feeling shame, being caught out somehow, feeling the fool, of being judged naive, gullible or stupid. 

Thank goodness I’m not so easily embarrassed anymore.  I simply don’t care if I’m stared at while throwing up in the street, or when I do something wrong, make a mistake, am caught out, feel out of my depth or don’t know something.  It’s easier than you think.  Not caring doesn’t mean not taking responsibility; I still apologise when wrong, try to fix errors and am willing to quickly agree when I have misunderstood someone or something. 

Yet remember, like me, you are human and just because you don’t know everything, or are sensitive and open enough to take something at face value and not realise someone is messing, teasing you, and above all you recognise you, me, we, ALL have, as much right, yes as much right as absolutely every other person…every other human being on this planet…to be here, to exist, to take up space, to have needs, wants, desires, have and use our voice. 

We are as human enough as the next person therefore when I am being human, doing human things, like being unwell, throwing up, navigating chemotherapy, living life, craving being home on the couch…I don’t have to bother with embarrassment.  I am already well and truly –  ENOUGH.

New Treatment

I’m on a new treatment called DVD and it’s fairly heavy duty so no surprise I wasn’t going to get away unscathed.  I want the regime to work.  I need it to work if I am going to be able to hang about on this planet for a little longer; a little longer than the statistics still give me hope for.  Anyway I’m here. I’m still here. I’m loving life, despite its challenges.  I’m not going anywhere other than on travel adventures as much and as often as I can.  I will be spending time with the most wonderful, special people I am privileged to have in my life, share this planet with as much and as often, as I can.

Happy holidays, Hanukkah and Christmas everyone regardless of what you do and don’t celebrate. I hope you are having an especially special break in whichever way suits YOU best.

Take care out there,

Janine

p.s. if anyone is hurting and needs support contact us at ComposurePsychology

Acknowledgements and References

Images: Me or courtesy of various artists on Unsplash.

© 2022 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Covid, Myeloma Treatment, Psychology for Cancer, Symptoms and Side Effects, Uncategorized Tagged with: Bortezomib (Velcade), Cancer, Chemotherapy, Daratumumab, Dexamethazone, DVD, emotions, Myeloma, Nausea, Psychology, RIchLife, Steroids, Treatment

Alive and Kicking

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

Added meaning

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

 Super scientist

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 5^th 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!

Acknowledgements

Images: 

Me and hubby

Unsplash:

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

56 days slow and bald

56 days since my stem cell transplant (SCT). I’ve now been home for the same amount of time that I was in hospital, 4 weeks.  Hospital seems like a year ago.  Life can be summed up by two words; SLOW and PATIENCE. 

I’ve been slow before (when temporarily injured or after a knee op or three) but this is a new slow. Walking from room to room is slow, sitting down, getting up, slow. Asking muscles to work, their receipt and action of requests, slow. Stairs well, they may as well be Everest! All the yoga flexibility and strength pre transplant has evaporated. Turning on taps, opening containers, putting on shoes are all a huge challenge. Stretching is a mammoth task, let alone trying a forward bend or downward dog.  I’m feeble, weak and extremely fatigued.  Putting feet up after a shower, afternoon naps (usually two hours) and early nights are a daily must.  Sitting down on the closed loo seat mid-way through brushing my teeth is novel yet frequently necessary; standing for two minutes in front of the basin is a tall order.   The pace of my life has almost ground to a halt and my new norm is slow.

Stairs may as well be Everest

C-diff (Clostridium difficile)

I am so happy to be home.  The night I was discharged I was ecstatic to be out. I’d recovered from the worst of e.coli, was on the road to recovery from SCT when WHAM.  Another infection turned up and walloped me in the face.  Well, more precisely it whacked me in the stomach and bowel, attaching me to the loo once again.  At least it was my loo, with nice soft paper, a wide sink in which my hands actually could be washed without splashing the floor and my feet, with predictable hot water, familiar sprays with berry aroma and none of that hospital cleaning fluid smell.  At home, even the loo was heaven.  The nurse apologised for not being able to pronounce the intruding infection’s name. I laughed and reassured her it was fine.  Unfortunately I could pronounce it all too well.  The last word was Italian for difficult!!  We agreed it was aptly named and settled on the more commonly used c-diff! 

Slow slow slow.  Taking it slowly and doing everything to prevent going back into hospital was the name of the game.  I fended off the doctors for a week. I reassured them I’d be fine, reminded them that my temperature spikes were nowhere as bad as two weeks previously and that I could handle the infection at home if they just gave me a nice heavy duty antibiotic.  Being readmitted would have taken the last bit of happy I had left in me and zap me of any remaining optimism about the transplant outcome.  To the doctors’ credit they gave me their dubious looking faces but didn’t push it.  They settled for giving me a three hour drip of fluids and the antibiotics.    I didn’t realise how rough I looked, sitting in my own room in Haematology, having been assigned my own toilet in order to keep me away from everyone else and no doubt keep everyone else safe from me.

Hubby Hero

Home is only safe because hubby is here.  His hidden talents and remarkable loving caring personality have come completely front and centre. I know I’ve said it before and I’m going to say it again, I am so grateful and extremely lucky to be loved in this way.  My heart hurts for those going through SCTs without the support of a caring partner, friend or special loving family member (even when those people prefer space). 

Hubby’s been doing all the cooking, washing and stuff around home with no input from me.  I don’t do his amazing dinners (perfectly cooked fish with burnt butter caper sauce, delicious lamb with salsa verde or Persian aromatic salad) justice as my appetite has not fully returned and my taste buds are just weird.  He gets up in the night (2am, 4-5am) to check I’m ok, to make sure I’m not stuck or being sick, to see if I’m wide awake (often at times the checks took place in hospital) or to see If I have fallen asleep on the sofa.

Our pond with gentle fountain – such a pleasure

He drives me to hospital, often twice in one day.  He frequently waits for hours or goes away and comes back again like an on-call chauffeur so I’m not standing around for longer than I need to. Hubby has made sure the garden is immaculate and created a pond with a water feature because he knows I love the sound of running water.  If chia seeds, baobab and pea protein are super foods then he is a super being (or bean, my new nickname for him)..sought of sung like superman except SUPERBEAN! 

Hospital, new look for waiting

Waiting and self as benchmark

Waiting is the most predominant and draining feature of hospital now. I go twice a week for checks.  It starts with an early morning (7.30am) blood test, a wait for results and then an occasionally short but usually long stint in the Haematology Supportive therapy clinic.  Though from today I only have to go once a week (whoop whoop!).  Other than the general stuff the results the med team are most interested in are my Neutrophils and Platelets and the question asked is, do I have any?  The good news is that while my Neutrophils (immune system) have been roller coastering around between .69 and over 1, teasing me as they get towards 2 before falling back again, my platelets have been doing a fairly steady climb and are now at 123 (well out of the woods of the 30s when I would need to be given a blood transfusion).  The rise in platelets mean my body is generating new cells.  Lets hope they are clear of Myeloma.  Once my Neutrophils get over 2 and start staying there, it means I will have some semblance of a rebooted immune system that might just be capable of having some childhood vaccinations and allowing me to be around more people.

Daily look

The slow, the fatigue, the compromised sense of self, the need to avoid boom and bust, the extreme patience needed with myself about every little thing I try to do and decide not to try to do, is all normal for this point in the transplant recovery process.  I tell myself to remember this and to not worry about what others that are post SCT have been able to achieve, start again or do before I have been able to.  Instead I focus on using myself, yesterday or two hours ago as my benchmark.  Have I been able to do anymore, any faster, any more normally than yesterday or this morning?  Yes, great.  No, great.  It will get better.  I will get stronger.  My platelets and neutrophils are my friends and working on supporting me as soon as they can.  Give them time.

Channeling Audrey

I’m not good at waiting.  Though I’m much better than I was before I was diagnosed.  Hospital and appreciation of the NHS can do that because waiting is part and parcel of hospital life.  I’m still rubbish at it.  Last Thursday I waited 1.5 hours with only a 30 second conversation with a nurse letting me know they are waiting for the doctor. It’s understandable but frustrating as I see other patients’ doctors arrive, see them receive their treatment and leave before me, especially when their appointments were later than mine.  Still I try to remember the overall amazing service I have received over the last 3 plus years. Some days it is hard though and I want to be angry, upset and cry. Unhelpful thoughts drift in; I booked this early appointment so I wouldn’t have to wait so long (again), this is wasting my life, it doesn’t take this long for blood results to come back or can’t you see from your board I’ve been waiting an age – do something! 

Uncovered

In therapy

My clinical psychologist side eventually kicks in and internally speaks to me – the person living with cancer, the Janine living with cancer treatment and its impact. Notice your thoughts and feelings, acknowledge them fully, connect with them (allow yourself to fully experience them, where and how they show up in your body, their nature, their depth, their source) and then once you have given this process time, engage.  Engage with the present world around you (notice three things you can see, hear, smell right now, notice three things with yellow in them). 

It’s ok to be angry, it’s ok to be upset and it’s very ok to cry. It’s also very ok to find your voice and ask the nurses again, what is happening and will the doctor come soon? Breathe, stay in this present moment, remember too who you want to be in the world, with others, with nurses, with doctors. I want to be kind, calm, clever and clear. Good, there is clarity in your values. It’s fine to say, calmly, to say gently to the nurse that you are upset. It’s ok to show tears.  You can still be kind, still recognise the wait is not her fault, that she is doing her best. You can ask her to see if there is anything else that can be done. 

Remember no matter which thoughts come into your mind, acknowledge and connect with them, engage with this moment, right now, moment by moment and then choose to place your attention on thoughts that are helpful, on actions that are supportive. If you are sitting in that hospital chair or waiting anywhere, choose to read, catch up on messages, listen to the radio, write a few notes for this blog, laugh, smile, marvel at your ability to shock yourself as you go past a mirror not recognising the person looking back at you  (I so often forget I am bald and look like others’ common perceptions of a cancer patient). Do this rather than sit, feeding the anger and anxiety by watching nurses and other patients, dwelling, being hooked by, ruminating on the thoughts that are leaving you feeling angry and upset.   

Knobbly head

Hey self clin psych Janino, you are pretty handy at times.  It was no coincidence that I met that side of you/me before being diagnosed and travelling life with cancer was it? Thanks for being there.  Thanks for helping me apply strategies to lift myself from the fog, the negativity, the anger and sadness.  Thanks for helping me notice the little things as well as the big things.  I laughed when I discovered my trackie pants were on around the wrong way today.  I was thrilled when a café gave me my favourite jacket, having kept it for me overnight after I walked away leaving it on a chair outside. Thank you.

Keeping cool

Hubby, our 14 year wedding anniversary comes up this week.  Thank you, from the bottom of my heart to the top, for everything you are, you do and for putting up with my slow.

Acknowledgements

Images: 

Me & Hubby – headshots

Unsplash:

Yogi Purnama – Superman

Michelle Henderson – Mr and Mrs

Macau Photo Agency – Waiting

Erik Nielsen – SLOW

Martin Jernberg – Everest

© 2020 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in C-diff, Fatigue, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT Tagged with: Cancer, Fatigue, Myeloma, Psychology, Recovery, Side effects, Stem Cell Transplant

Escape after SCT and E.Coli

Escape! I’m out of hospital.  I burst into tears on leaving. Overwhelmed with a sense of freedom and loss. Loss of four weeks of my life and being in the world.  Last night was my first night at home since June 27^th.  Twenty-six nights in one small poorly ventilated over heated room.  Up until this experience I had never been in hospital for more than a few nights.  Let’s hope I don’t end up back there which is common after a Stem Cell Transplant (SCT).  Most people get an infection of some kind and have to go back in for a while.  Afterall the immune system is still fairly non-existent. Though I think I’ve done my fair share of infection.  E.Coli gripped me for at least two weeks of my four week stay.  Not any old E.Coli either.

E.Coli

Specialist Nurse J came in yesterday.  She asked me, do you know how sick you were?  I said not really; I slept a lot and comparing my bad patch to awful gastro-enteritis which I have had a few times, in some ways it hadn’t seemed so bad.  She set me straight, kindly.

She explained she had looked in on me a number of times but I had been asleep.  This was a good thing because while most people have infection markers of 10 or below and doctors start getting worried and applying antibiotics, getting xrays, pet scans when infection markers are around 100, my infection marker registered over 400.  My temp consistently spiked into 39s.

Nice.  Once again I don’t do anything by halves.  Trust me.  I’m into full body experiences.  Though thankfully I slept through a lot of this one!  Instead of the Dr B predicted two week stay in hospital I was there 26 days and believe me once you feel well, hospital is not the place you want to be or at least definitely not cooped up in one room and one ward without being able to see the world.

Similar to e.coli

Relief

Two windows gave me moments of solace and a wee bit of interim escape.  I could just see people playing basketball and tennis in Ruskin park through the tree canopy.  Though the windows were in the sluice room which while spotless wasn’t a place I wanted to hang around much. Being reminded I may need to use a commode and other goodies at some stage in my hospital visit; if not now then next time wasn’t an image I needed in my mind.  Being in there was handy one day; I grabbed a sick bowl for a moment of queasiness.  Everything I needed right there, in the moment.  Can’t ask for more than that.

The other HUGE thing that provided relief during this ordeal was all the fantastic facebook, insta, video, whatsapp messages I received.  THANK YOU THANK YOU. Also for those I did manage to call for a few moments – thank you for being there, again and again.  You are so so special, all of you.

SCT

The heavy duty chemo and return of my stem cells has appeared to go well and my neutrophils (basis of immune system) are on the rise.  I did get mucositis (raw exposed soreness feeling in throat, mouth and oesophagus) which is common and I didn’t get it badly which I am thrilled about. My platelets are still a little low but heading in the right direction.  Once I have hit the SCT + 100 day marker (October) I am due to have a bone marrow biopsy which is the deep breath moment.  Will my bone marrow show any signs of Myeloma?  Will it show a really low sign e.g. maybe a para protein (pp) of 1, similar or undetectable in my marrow?  After all the cells that went back in were collected when my pp was 1.  Or will it be higher?  Will it come down? Questions, questions, patience needed.  In the meantime I’m enjoying being home!

PICC Lines and Clots

PICC lines are good things and you can be unlucky with them.  I’m a full not by halves person remember so with my first PICC line a clot arrived and ran up my arm above the PICC line towards my clavicle.  If you saw the images on insta, you probably noticed my right arm and hand went an awful purple and swelled to about three times its size.  After a week (I think I was a bit out of it) they took my PICC line out (nasty little buggers – they have a fish hook style on their ends so they grip once in (a good thing, nasty when they have to come out).  At least the line itself comes out fairly quickly, easily, and reasonably pain free.  Another PICC line was put into my left arm and normal intravenous meds resumed.  The sub cutaneous line in my right leg (for the Haldol) was moved to my left arm also which made sleeping on my right side a whole lot easier.

With daily clexane (enoxaparin) injections again, the clot eased after a week and I recognised my hand, thank goodness.  I was worried.  One nurse /doctor (can’t remember now) had said clots can take three months to resolve.  I’m still on the clexane but there are few visible signs of the clot now which is reassuring.  Just bruises and quite a few of them.  Hey, that’s completely manageable so I’m grateful.

A day in the life while in hospital

11pm – finally finish all the intravenous and sub cutaneous meds for the day.  With two exceptions 1) haloperidol and something else in a slow driver which continues to provide  anti-sickness properties through the night, and 2) TPN – essentially food and minerals delivered over 24 and 48 hour periods into my PICC line (because I wasn’t eating enough especially through the e.coli business.  I couldn’t stomach the fortijuice and shakes that were on offer (pun intended!)

2am observations done – blood pressure, oxygenation level and temperature

Between 5am and 6am – more observations and then the intravenous drug regime and oral meds process began.  Some meds couldn’t be dripped in at the same time so I would end up doing one hour of something then a flush of saline (or similar) for 10-15 minutes then 30 minutes of something else and then a flush and then two meds at once for an hour (all while the other two described above kept going in! 

This would continue for the rest of the day; obs and meds pretty much until 11pm and the cycle would start again.  Sleep at night was fleeting.

I showered on good days and confess to going four days without a proper wash!  I can’t even imagine it, yick!  When you are sick you are sick!  I lived in Hubby’s boxer shorts and a singlet.  I didn’t care who saw me pacing the ward (on good days) in these.  Staff have seen worse and the get up was the coolest and most comfortable thing to wear.  Hubby was an angel – delivering freshly laundered clothing, drinks, whims (shortbread) whenever I asked and that meant most days.

Each time I was woken up I’d need to drink, slowly make my way to the loo with Harry; my Med stand with four pump boxes on it to manage each drug and boy could he bleep.  Then back again for the next wriggle up the bed in to a semi comfortable spot and before letting a very patient nurse begin the next hook up!  Harry’s bleep would be every time an infusion was 5 minutes from finishing, then once finished, then whenever one of the pumps got it into its techie bits that there was a downstream occlusion i.e. there wasn’t but I may have moved my hand a fraction so it decided bleeping until it was checked was a cautious thing to do.  In the end I got sick of buzzing for Nurses who had better things to do and would turn the bleeps off myself and restart the infusions when I was sure a pump was being over sensitive.  Anything to stop the bloody beep!

Harry’s mate keeping an eye on me.

Hospital food is beige.  I get they try and have a lot of people to accommodate.  If you have no appetite and are trying to force yourself to eat; the menu is not a pleasant thing.  I did however live on tuna and mayonnaise sandwiches when I was up to it and the kitchen staff were lovely.

Funnies and daft things people say to you

On my second to last day I took Harry to the loo as usual only to realise I wasn’t hooked up to him anymore.  That was one image I could have saved him from!

You’ll be out before you know it (when I’d already been in 3.5 weeks).  Actually I will know it.  I’m willing it.  Now I’m begging for it.

Oh I’m sorry. It will grow back quickly (referring to my hair and shaved head).  Why are you sorry?  I’m not sorry.  I’m cool with it.  I have more things to worry about than my hair!

Do you have kids? No??? It’s not too late.  Oh yes it is!! Its ok my life can be complete without kids.  Just because you have five and want more (pity your wife possibly?) doesn’t mean I need to have them.

By the way my responses stayed in my head and instead I would just smile.

First night at home

I’ve been awake since 4am, walked into the garden and around it about six times, felt the rain on my scalp and face. Read a fabulous big magazine (gift from a neighbour and the publisher).  Check it out here:

https://www.instagram.com/documentjournal/

https://www.documentjournal.com/

I have revelled in cuddles, kisses, touches, smelling and touching hubby.  Holding hands is so special when you haven’t been able to do it for four weeks. 

 Acknowledgements

Images: 

Me & Hubby

Photo by CDC on Unsplash – ecoli style

© 2020 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Blood Clots, E.Coli, Myeloma Treatment, Psychology for Cancer, Stem Cell Transplant SCT, Symptoms and Side Effects Tagged with: Blood Clot, Bone Cancer, Cancer, Chemotherapy, e-Coli, Fatigue, Mucositis, Myeloma, Psychology, Treatment, Worry

I’ve been dying to go so as I’m dying, I’m going.

I’mmmmm back! 

When I left you last, Mum was in recovery from breast cancer and Dad’s melanoma was kicking him in the groin (literally).  They are amazing people, and fortunately for me they coped and are coping incredibly well with the challenges.  Apparently this wasn’t enough to contend with, a trifecta was called for though I thought we had already achieved that.  Not to be upstaged, my cancer leapt out of hibernation.  My dreaded paraprotein levels (42 at their worst, down to 1 after treatment) are now at 17.

It was gutting to see the Myeloma active again after such a short time.  I was again hit by how I wasn’t ‘special’. I wasn’t going to be the person who is miraculously cured by the new cutting edge treatment. I wasn’t going to be one of the statistics up the right (and right) end of the bell curve.  I was firmly in the middle of the pack. My body had responded very well to treatment but I was one of the many people who experience the peripheral neuropathy side effect and have their myeloma become active again within 6 months after first treatment.  I was well and truly on the path to being the ‘typical’ (albeit younger than usual) Myeloma patient with an 8-10 year life expectancy after diagnosis.  I’m almost three years in now…well, you can do the maths.

Tests, tests and more tests

The big upside of being on care as usual and watch and wait, is that over the last six to nine months I haven’t had to go to hospital every week, its mostly been monthly.  Except that while my schedule was clearer, I had time to pack in everything that had been on hold while cancer took pride of place.  More tests, x-rays, MRIs; I felt like an old hand, navigating the hospital walkways, waiting rooms and procedures with robotic familiarity.  The increasingly unbearable pain in my hands, arms and ankles was not Rheumatoid Arthritis after all but more likely the bloody Myeloma.

A rotator cuff injury in my left shoulder (to go with the benign lesion that was already there, maybe it was lonely?) needs physiotherapy.  It’s about nine months since the referral, no sign of an appointment yet.  I have had a letter asking, do I still want an appointment?.  Yes I bloody well do thanks!  Well in that case, don’t contact us we’ll contact you, was the reply.  Note to Health Secretary (It’s not Jeremy Hunt these days is it, hope not, though sadly I don’t know who it is and if they are any better, could they be worse? That thought is scary!!).  Anyway back to the note – Dear Health Secretary, please get the physio department more resources, they are swamped! Hmmm.. not much time off hospital after all.

Treatment two in the sequence for prolonging life after diagnosis with Myeloma

My next round of treatment was due to start when my paraproteins were up to about 30 (or if they started increasing rapidly).  Mine had been rising steadily in 1-2 points a month.  A January 2020 start back at hospital seemed a reasonable prediction and hubby and I had talked of getting away for a, never before done together three month trip, prior to the treatment shackles going back on.  When Dr B said we need to start treatment ASAP, I’m worried about your back.  I said no you don’t, we’re out of here.  I’ve been dying to go to the middle east so as I’m dying, I’m going!

What I really said was, boo I had hoped it would be January not October, can I put chemo off for a while?  He asked if I felt well enough to travel.  Of course I said yes.  I really do wonder what I would have said if I hadn’t felt well enough.  I suspect I would have lied, said yes anyway.

Patient choice and positivity

I was going to test the concept of ‘patient choice’, there is such a thing isn’t there?  Nothing was going to stop me getting away with hubby.  We both needed a break and this rare chance where we had time off work/hospital at the same time was not going to be missed. I asked what I could do to prepare for the next round of chemo.  Dr B said the best thing was to stay positive.

Ha, all the more reason for me to travel before starting treatment then.  Being my ‘adventurer self’, experiencing new places, cultures, food, wine with the love of my life, IS what nourishes my soul and makes me feel positive!  We negotiated with Dr B for chemotherapy to start in six weeks; not the three months I’d hoped for but brilliant all the same.  A strange mix of worry (about treatment) and euphoria surged through my body. I noticed a feeling and realised it was excitement!  I hadn’t felt that in ages.  Walking home from clinic, visions of Israel, Lebanon and Jordan flooded my mind.  I went straight in and booked flights.

Ready

I’m back now from an amazing trip.  I feel ready.  Really ready for the next phase of this Myeloma madness.  I even feel hopeful (albeit on top of my usual layer of pragmatism) that I could still be a wee bit special.  I could still get that fantastic recovery that may not be likely but is POSSIBLE.

Month one of the new treatment regime.  Hit me with it Doc.  I can take it.  I’ve just knocked three more countries off my bucket list (big grin).

Acknowledgements

Images: Various places in Israel  – Hubby or Me

© 2019 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Cancer in my family, Myeloma Treatment, peripheral neuropathy, Psychology for Cancer Tagged with: Blood Cancer, Bone Cancer, Cancer, Dying, Family, Myeloma, Para Protein, Patient choice, Positivity, Psychology, Travel, Treatment

Silent Dominos

Hello you. Is anybody out there? Sorry I have been so silent for so long; it’s been a heck of a hard eight months. That’s not to say there haven’t been some good times, some great times, times I’ve felt adventurous, happy, even peaceful. There have though, been times when I’ve thought this is just too much. Too much everything. I may have been giving this blog the silent treatment, yet in my head, I have written so many, many, times. 

If any one thing had happened, gone wrong, been challenging; I would have been able to cope. Life doesn’t work that way, though, does it? One thing happens, then another, and while I get my head around those, another and another, like multiple, side by side dominos tracks; they all cascade, one by one and at the same time – bang, bang, bang. 

After about the third bang…my ability to do the helpful, healthy things went out of the window. I fell of the tracks… I struggled to get back on. For a week, I managed it, then I fell off again. I picked myself up, recommitted but only for a day … and then I …gave up.

Sugar, alcohol, copious amounts of coffee, long periods of not eating, then eating crap, withdrawal, duvet days, not wanting to socialise, wanting to be on the couch with TV and the cat…all re-entered my life with a vengeance. I was no longer walking the psychologist and cancer care talk.

Except I couldn’t escape the knowing. I knew what was happening. I watched it happen. I watched everything I’d built up to support me, over the previous year since diagnosis, slip away.  Despite this, somehow, I was still managing to function, to help others, to turn up at the cancer centre and be the psychologist, I knew myself to be.  The cost was high. Exhaustion kicked in. Overwhelm. Then the next domino fell, and the next and another. 

So, I fell off the tracks and self-care plans. I stopped walking my talk. Out went the green smoothies and in came caffeine and Pisco sours. I was in cope, any way I could, mode. 

Turns out I am very, very, human after all. Who knew? 

And the dominos…Well, one you already know about, if you caught my last two blogs,
Isoflavones and Tears on a plane

The others were a shock to me, maybe to you too.

The first set;

1. My hands stopped working.

2. Mum got cancer.

3. An internet troll joined my party.

I’m not silent anymore.

Posted in Cancer in my family, Psychology for Cancer, Symptoms and Side Effects, Uncategorized Tagged with: Cancer, Family, Fatigue, Mother, Psychology, Side effects, Troll

Pulling my hair out

I’d be pulling my hair out over the steroid incident (see last post) or I would be, if it wasn’t falling out, on its own accord.  I’d be pulling my hair out over this week’s incident: a miscommunication between the Clinical Trial team and the Lab that makes up my chemo drugs resulting in me having to wait an extra three hours, until after 5pm, to be hooked up and receive my treatment.  I didn’t get home until late and that meant less recovery and down time than I usually have on a Monday.  Well, I would be pulling my hair out over this, if it wasn’t already receding at what seems like a rapid rate and coming perilously close to exposing my devil’s horn.  I only have one (maybe I do things by halves after all!) bump of calcified bone formed from hitting my head a million times over my life time: on open cupboard doors, someone’s elbow when standing up, fridge doors, you name it I’ve managed to bump that same place on my head in some extraordinary ways!  Hair loss and receding hairline, missed steroids and treatment delays. More, thank you Chemo, moments.

I know I’ve been lucky: I started with a lot of hair.  A lot!  Unlike many people going through Chemo for breast cancer and cancers other than Myeloma, my treatment is not usually linked with complete hair loss.  I would not be a sexy bald (though have decided to do my best to embrace it, if it does happen).  It is stressful to see the masses of hair come out in my fingers, in the sink, in my brush, in the air.

Hair loss – today’s right hand scoop – a light day (yay!)

Hair loss – today’s left hand scoop – a light day (yay!)

Hair loss – today’s offering

I’ve lost about a third of the volume so far.  My hairdresser K, who I’ve known since 1993 (longer than my hubby and my ex!)  knows my hair well and confirmed I wasn’t dreaming this.  I am fortunate: I have regrowth already.  Well lucky of sorts.  The regrowth is crazy curly and goes out at right angles.  Hubby nicknamed my curls, Turkey Twizzlers.  Helpful.  Giggle.

With my hair down, things are hidden and a bit tidier but the odd curl makes its way out over the day and spooks me when I look in the mirror – how long has it been jutting out like that ???!! OK curls can be cute (very very beautiful in fact, like those that adorn my sister-in-law and gorgeous niece) however a whole heap around my face when I am used to waves and straight hair takes some getting used to (as I imagine being bald does too).  The curls are also resistant to smoothing serums and are frankly unmanageable.  I give up.  I hope they hurry up and grow long so gravity straightens them out.

Growing.  Regrowth.  That’s a good sign, isn’t it?  The Chemo can’t be killing off all the good cells.  Surely my nails and hair wouldn’t grow if my body didn’t tolerate the Chemo well, most of the time at least (and when I get my steroid on the right day, not bitter, can you tell?!).  My nails, will I jinx them saying this?  They seem super resilient so far… I hope it lasts.  For the first time that I remember, my results show I’m calcium deficient so now I’m on an extra tablet for that and reintroducing halloumi and mozzarella.

New Curls

Sticky eyelids and thin skin

Hair loss, sticky eyelids, thin skin that leads to blisters or adhesive grazes when they wouldn’t normally occur are just some of the small and large niggles cancer and chemo have added to my life.  Sticky eyelids are frustrating…I’m constantly pulling at my lashes to ‘release’ my eyelid from my eyeball.  Refresher drops help a little though the stickiness quickly returns.  Are there any advantages to sticky eyelids?  I can’t think of any?  Do let me know…

I put on a favourite super comfy pair of boots and invariably on a day when I’m running for a train or having to do loads of walking,  five minutes in, I have a blister.  Pre-chemo I wouldn’t have had a blister – its why I put these boots on after all!  Scrabbling around for plasters, hoping they’ll stay on, too late, damage done, now nothing works.  I revert to trainers as soon as possible.

Anyway, back to hair.  What to do?  Regain has been suggested.  K has told me some of his clients also living with cancer have had great success with it though its best started as early as possible.  What do you think – should I give it a go?  I suspect it would possibly be introducing a toxin however is it a worthwhile trade-off?  Every week there is something new that I think needs my attention and involves time consuming research yet if I don’t do it, I feel like I’m not doing the best I can do.  It’s so exhausting.

Psychology

Body changes

Changes in body image will take getting used to and as always require kindness and compassion.  It can be helpful to look in the mirror and look for what I love and am grateful for and not just focus on the unwanted changes.

For some people, hair loss is one of the most difficult aspects of living with cancer treatment as it can be entwined in their personal sense of self, preferred way of presenting self to the world and identity.  It can also be tied up with ideas and assumptions about what it is to be feminine, masculine, young, virile, strong and attractive to others.  Hair loss can trigger anxieties or trauma associated with earlier life experiences where people received unhelpful comments about the way they looked.

Society influences about what hair should be like overall, or at certain ages or what a hair style represents can also trigger unhelpful assumptions, rules and thoughts such as I must cover up my baldness, no one will find me attractive, I’m no longer feminine/masculine therefore there is no point being open to a new partner, friends won’t want to be seen with me so I shouldn’t meet up with them. 

Hair loss and anxiety relating to hair disorders can be extremely distressing for some people…however you do not need to put up with it.  Talking therapy with a psychologist can help with the distress.  Therapy can help you uncover your thoughts and feelings about your hair and image, discover what is helpful and unhelpful, what is keeping distress going and identify new strategies to try out that nurture your identity, social interaction and self confidence.  Therapy can help you accept your new or current image and not be stopped by any unhelpful thoughts about it.

Trichotillomania and Alopecia

There are many other difficulties relating to hair that people live well with live every day. Trichotillomania and Alopecia are just two of those.  For those that experience great distress about these talking therapy can also help in similar ways as described above.  If distressed, if one of these conditions is stopping you feeling like you or doing the things you want to do – don’t go it alone – a psychologist can help.

Trichotillomania (trik-o-til-o-MAY-nee-uh).  Sometimes referred to as hair-pulling disorder, is a mental disorder that involves recurrent, irresistible urges to pull out hair from your scalp, eyebrows or other areas of your body, despite trying to stop.¹

Alopecia and Alopecia areata. Alopecia refers to hair loss generally while alopecia areata refers to a specific, common cause of hair loss that can occur at any age. It usually causes small, coin-sized, round patches of baldness on the scalp, although hair elsewhere such as the beard, eyebrows, eyelashes, body and limbs can be affected. Occasionally it can involve the whole scalp (alopecia totalis) or even the entire body and scalp (alopecia universalis).²

Mental Health Awareness Week

By the way – It’s mental health awareness week in the UK and this year the focus is on stress.  More about it here https://www.mentalhealth.org.uk/campaigns/mental-health-awareness-week.  Talking about mental health helps to reduce stigma.  I know I’ve said I don’t always welcome being asked ‘how are you?’ however that mostly related to diagnosis and early treatment days of living with cancer.  I encourage you to tell someone how you are feeling.  If you can ask someone else who you suspect may be feeling low or anxious or whose behaviour has changed (they’ve become more withdrawn, don’t seem to enjoy the things they used to enjoy or you notice appear to be struggling) if they want to talk.  5 minutes can make a huge difference.  You don’t have to say anything special, just listen, acknowledge what they are saying and help them understand they are not the only ones to feel that way.

I know this because I work with people every week who share their experiences and symptoms.  Research tells us¹:

• Worldwide – Major depression is thought to be the second leading cause of disability worldwide and a major contributor to the burden of suicide and ischemic heart disease
• UK – Approximately 1 in 4 people in the UK will experience a mental health problem each year
• England, 1 in 6 people report experiencing a common mental health problem (such as anxiety and depression) in any given week.
• USA – Approximately 1 in 5 adults—43.8 million, or 18.5%—experiences mental illness in a given year.
• Australia – Almost half of the total population (45.5%) experienced a mental disorder at some point in their lifetime
• NZ – one in six New Zealand adults (16%, or an estimated 582,000 adults) had been diagnosed with a common mental disorder at some time in their lives.

Each person’s circumstances and road/process of recovery and managing mental ill health may be different yet there are often commonalities of impact on lives and symptoms.

Just imagine, this week might be the week you seek help or offer help to someone living with stress or living with the stress of cancer.  What a difference you will make maybe without even knowing.

Then think of me with a Donald Trump style comb over.  IT IS NOT GOING TO HAPPEN!

References

¹ https://www.nhs.uk/conditions/trichotillomania/

² http://www.britishskinfoundation.org.uk/SkinInformation/AtoZofSkindisease/AlopeciaAreata.aspx

³ see Mind and Mental Health Foundation and National Health Alliance on Mental Illness, Australian Government – Department of Health, NZ Mental Health Foundation for references and other details

Acknowledgements

Images: Upright Hair – mohamed-nohassi-531501-unsplash & Me

© 2018 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: Alopecia, Alopecia areata, Cancer, Chemotherapy, Hair, Hair loss, Myeloma, Psychology, Receding hairline, Side effects, Sticky eyelids, Trichotillomania

Mistake. Give me my steroids, NOW!

Sick as a dog, thank you Chemo.  I am meant to be on top form tomorrow.  It’s hubby’s very special birthday and we have a full day of fun planned.  Thanks, thanks a million for deciding to be ‘a bad Chemo’ day.  Team, my wonderful team, I feel let down.  There has been a mistake.  You forgot to give me my steroids.  I trusted you.  I felt safe.  I wasn’t safe today.  It made a difference, a huge difference.  I let myself down too. I forgot to do my own checks.  I forgot to ask for my steroids.  Consequences.  There are always consequences in this Cancer game, some big, some small, some easily remedied, others drastic and most, a right pain in the arse.  Consequences, you can rip the rug right out from under my plans.  A plan to; feel good, not have to go near a hospital and not have to be in, manage my mood mode because something unexpected and unhelpful has triggered me.

Monday, you didn’t start out a bad day. In fact, you were brilliant until 6pm.  I went for my morning blood test, at 8.30, later than usual after a wee welcomed sleep in and a fab, fun, friends packed day, on Sunday.  Then, I moseyed to a café near hospital to do Italian language practice before my lesson with the fabulous C from Sardegna.  I wandered back to Macmillan to a meeting with my therapist who helped me think about my recent test results, the meaning I was adding and my plans to up the ante on the work front.  As usual she was a great help.  My pink smoothie, a nutri-bulleted beetroot and green salad was yummy.  My call with friend and coach M, was great.  Even Chemo went smoothly.  Or so I thought.

I got home and started feeling wretched.  More wretched than I have in ages after a Chemo day.  Even drinking water was difficult.  Pain, everywhere.  Nausea, constant.  Stuck close to the bathroom.  The Dom anti-nausea pill wasn’t doing its thing.  Sweat, cold, sweat, cold.  Aaargh.  Why?  Why today? This is sh*t.  Will I function tomorrow?  Hubby’s birthday is so important to me.  He has even taken the day off work which is so rare.  10.15pm rolls around and Chemo you bit*h, you have me sitting on the couch, head in hands and between my knees.

Steroids

Then it dawns on me.  I didn’t receive my steroids today.  Dexamethasone, I wasn’t given it and I was so busy watching Americans on Prime to distract me from any pain of the cannula going in, that I didn’t do my own checks.  Bugger.  Now what.  Now, I’ll have to telephone the Haematology Registrar on-call and see if I can take my day 16 (tomorrow’s dose) of Dex now.  It’s not a great time of day to be taking a steroid, they’ll keep me up all night…but hopefully I’ll feel better.  Priority right now: feel better.

Then I realise.  Pissed off.  If I take the dose I have at home, I’m going to have to go to hospital tomorrow now, the very day I didn’t want to go and normally don’t have to go near it. And on your birthday, darling Man.  I don’t know how long it will take, to pick up a steroid on a day I am not usually there.  VERY PISSED OFF.  My feeling wretched, my having a problem, my having to go into problem solving mode, my having to deal with the impact, accept the consequences, pissed off…it was all so preventable.  Annoyed.  Sad.

I ring the hospital, ask for the Haematology Reg on call.  Operator says she‘ll page him and he’ll call me back very soon, often straight away.  I wait. 40 minutes later, I’m still waiting.  I’m so sick, I can’t get angry.  Hubby calls.  The operator is surprised I haven’t heard. She pages him again.  He calls back in 5 minutes.  No apologies, no explanations (e.g on another call).  He runs through the usual questions – have a vomited? Not yet. Do I have a temperature?  No, just the sweat, cold combo.  Do I have diarreah or constipation? No.  Just pain, a lot of pain and nausea that pills don’t kick.  Finally, he confirmed I should take the Dex I have at home and go up to hospital for another dose tomorrow.

I take the steroids and Hubby manages to find another stronger anti-nausea tablet amongst my large array of pills in ‘the pill box’ (a large bread bin, works a treat).  I cuddle up to Hubby, focus on his breathing and wait for drugs to kick in.  By the time we move it’s 1am and despite the steroid, I feel like my body is now desperate for sleep.  Good.  Happy to oblige.  I drag myself upstairs to bed.

Hubby’s birthday day.  I feel a whole heap better but very drained.  He drives me to hospital.  I go to get my steroid and my fear about how the day may unfold starts to be realised.  Cancer, you bit*ch, you don’t make life easy.  My steroid isn’t ready. I don’t get to drop in, collect it and get out again (my hope).  Despite having an email back from my specialist in the morning, acknowledging that a) my Chemo, carfilzomib is hard to tolerate without the steroid and b) containing his request that I be dispensed the steroid today, directly from the Chemo Day Unit (CDU) and c) that the clinical trial nurse should call the CDU nurses to make sure they have the steroid ready for 9.30am – it’s not ready.  I even get there about 10.40am, figuring I’d give everyone a bit more time to communicate and prepare.

I explain again, what has happened.  The CDU nurses won’t give me the steroid and when they call the Clinical trial nurse for information something is lost in translation so they now think they need a prescription before they can give me anything.  I show them my box of Dex with the prescription and dose details AGAIN.  I start to get upset.  Really upset.  I could be waiting for ages for the clinical trial nurse to come to the CDU with a prescription (I’ve been through this before so know how long it can take) and then if I must go to the regular hospital pharmacy for it to be filled, I can write off another hour, it is hideously inefficient.

Tears.  Yep they’re coming.  I cry.  M the wonderful receptionist comes to comfort me and says ‘this is not like you’ and to find out what’s going on.  I fleetingly wonder ‘what is like me, when I’m here?’  I feel bad because I know the team have had someone die today and one of the head nurses has had to race off and manage that.  My tears over impacting my day with my hubby seem trivial in comparison and yet not, nothing is trivial in this Cancer journey.  It’s all bearable for me most of the time, yet it is all sh*t too.  I cry some more.

Nurse L comes to my rescue.  She looked after me all last year and I missed her when she left to do a stint in private practice.  She asks what is going on, I tell her, show her my empty box of Dex and say I just need my day 16 dose because I had to take it last night after not receiving the steroids yesterday. I don’t say which Nurse forgot to give me the steroid.  Nurses are human.  We all make mistakes.  She is usually so so good so must have had an ‘off day’.  AND, it was my mistake too.  It’s not really fair to hand all responsibility and agency of my care over to a Nurse.  After all, I bang on about being the agent in your own health and treatment for as long as you possibly can.  Nurse L goes and gets the Dex dose immediately and finally I get to leave.

Thank you M and L.  You saved my day.  I know my Clinician plans to talk to the nurses about how the steroid was missed but I don’t worry about that now.  I know mistakes happen yet between us, the Nurses and I are usually so good at going through a checklist each time. It’s a shame it went wrong.

On this day of all days.

Psychology Tips – Working with your and others’ mistakes

Admitting mistakes can be hard.  Research shows there are links between our beliefs about whether we can change our behaviour or whether our personality is fixed and if mistakes and admitting mistakes are perceived threats.¹ Cognitive Scientist, Art Markman summarised the research results² and explains when you believe that your behaviour can change, you are more likely to be willing to admit responsibility.  You recognise that by admitting what you have done wrong, you can work to make it better, to grow and so you are not threatened or are less threatened by admitting mistakes.

People who do not believe that they can change, can be stressed by admitting their mistakes, because they believe that those mistakes say something fundamental about who they are as a person.  Understanding that people see their own mistakes as a threat, and have different beliefs about their own and possibly others’ ability to change, can help us to remember to avoid showing unhelpful frustration and anger when managing mistakes.  We can all change our behaviour.  We can all learn from our mistakes.  We can all repair and improve relationships.  It can take some people longer than others, to recognise that change and growth is possible, especially when their starting point is one of: I and others have fixed personalities and mistakes are flaws.

It’s easy to get frustrated with others’ mistakes when we feel something is unfair (it can be completely justified) but does it help the situation to show the frustration?  A compassionate response will get you more powerful results and responding with anger and frustration negatively impacts loyalty^3,4.  In my case, I want the Nurses to like treating me.  I want them to feel we are on the same team, to feel loyal, committed.  Showing my frustration and upset was normal, human, yet unlikely to have been the optimal way to have managed the situation.  Remembering that frustration, anger and stress raise heart rates, make it harder to think, mean that when recognising frustration, a good first step is to pause, be mindful, and then choose a more powerful response.  One of clear communication, compassion, kindness, empathy, forgiveness.  This is more likely to invoke compassion, kindness and loyalty in return.

Recognise too that anger, frustration and upset at mistakes of yours and others are often underpinned and exacerbated by worry and a catastrophising thinking style.  I was worrying that my need to go to hospital on Hubby’s birthday day would ruin our day.  Ruin his day.  Eventually I managed to realise an unhelpful worry and thinking style was probably in play and ask myself, was my hospital visit really the worst thing in the world?  Were my thoughts true, would our day really be ruined?  How much time in our day did it take up really?  Was it more likely that hubby was happy to help and had enjoyed his rare time alone, in a café, doing things he wanted to do, without having to be at work, while I was at hospital?   Regaining perspective enabled me to let my frustration and upset go.  An hour later I noticed I was laughing at something Hubby said and our day was going well.  Yes, it meant we came home earlier than expected because I was really tired yet we relaxed together and the evening was a good one.  I could easily have been very tired anyway.  It’s not unusual for the day after Chemo.

References:

¹ Who accepts responsibility for their transgressions?  Schumann, K and Dweck, CS.  Who accepts responsibility for their transgressions?  Pers Soc Psychol Bull. 2014 Dec;40(12):1598-610. doi: 10.1177/0146167214552789

² Markman, A. (2014) What makes some of us own our mistakes and not others?

³ Sara B. Algoe & Jonathan Haidt (2009) Witnessing excellence in action: the ‘other-praising’ emotions of elevation, gratitude, and admiration, The Journal of Positive Psychology, 4:2, 105-127

⁴ See Adam Grant, Psychologist and author of Give and take: A revolutionary approach to success.  See also work by Emma Seppala, Center for Compassion and Altruism Research and Education.

Acknowledgements:

Shadow and Dex pictures by Me

Dog Photo by Matthew Henry on Unsplash

Shattered plate Photo by chuttersnap on Unsplash

Failed it Photo by Estée Janssens on Unsplash

© 2018 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Myeloma Treatment, Psychology for Cancer, Symptoms and Side Effects Tagged with: Cancer, Carfilzomib, Compassion, Consequences, Dexamethazone, Frustration, Mindfulness, Mistake, Mistakes, Myeloma, Nausea, Psychology, Sick, Steroids, Sweats, Tears, Worry

Brolly Boo Hoo

Ahoy there…you may think I’ve been on some desert island and that accounts for my lack of communication.  You’d be right.  I’ve been in a world full of ‘I should blog’ and ‘I am blogging, it’s just that it’s in my head or on a random note, emailed to myself.’  That’s the funny thing about blogs…they’re there all the time yet not always out there….

I don’t know why I’ve put off getting my thoughts and stories out and about.  I suspect it’s because I’d like to provide a great psychological tip each time I blog.  Sometimes I can’t think of something I haven’t already said or I get tangled up in ’getting it right’.  Then I end up not doing anything.

Paralysed.  By what?  Thinking something may not be good enough?  Yet that’s not what this blog is about, at all.  It is already enough.  I blog when I can and when I do.  I blog what I can.  No more.  No less.  It’s helpful to me and hopefully, to one or more of you.  It feels creative, a release.

It is what it is.  I love that saying.  It is so black and white yet YELLS acceptance.  Can you visualise that?  A phrase exuding and yelling acceptance.  I love metaphors.  I think I’ll ask my friend Sapphire if she might have a go at sketching this one, if she has time.  She either will or won’t: both are fine.

Health status

I am doing fine.  My mantra from the meditation I enjoy: I am doing fine.  I am in my fourth month of the 18-month maintenance cycle of treatment.  My results are no better, no worse.  I get tired.  My feet tingle sometimes painfully with neuropathy.  I ache.  Sometimes I have trouble concentrating, making decisions or being articulate.  Often, I am the opposite.  Out and about.  On the go.  Functioning well.  Being me.  Alive and living.

Eulogy

I said a very solemn eulogy last week. To my umbrella.  My favourite umbrella that has been in the family for 13 years.  13 years!  Do you know how unheard of, this is?  It hasn’t been left on the bus or on a tube or in a café or lent to someone without ever being returned.  It was a miracle of survivorship.  It outlived all expectations.  Especially with my record for losing things.

I loved that umbrella.  It was a deep British green with a Jaguar car logo on it.  A strong powerful leaping Jaguar.  I love cats and especially big cats like panthers and jaguars (I even follow Jacksonville Jags NFL team since seeing them at Wembley a few years ago) and I have always liked the shape of Jaguar sports cars.  This umbrella was perfect for me.  It was small, light and a marvel of efficacy.  Even the spring mechanism worked well every time.

I was so sad to see it go and I am yet to replace it.  Living in England, particularly in Spring does not allow long before full commitment to another umbrella is required.  It is of course, raining heavily again today.  I wonder, will I channel my wonderful big cat umbrella and outlive expectations?

Who knew an umbrella could have friendship qualities?  Always there.  Reliable.  Helpful.  Comforting.  Safe.  I’ve been known to buy crystals, carry stones in my pocket at times.  I wonder what other ‘things’ help others out there with Chronic Illness, Pain or Cancer.

Movie madness

I was sitting in the cinema recently and the lady next to me sneezed.  Over and over again. When I’d sat down, I had noticed she had a blanket over her knees and thought nothing of it.  After her first sneeze, a thought exploded into my head…oh sh*t, does she have flu?  I don’t have a mask.  Bugger, my immune system can’t get away from this one.  Panic stations.  Find a tissue, FAST. Cover my nose and mouth quickly.

I turned my back to her, snuggled into Hubby.  I felt sad that a visit to the movies wasn’t straightforward anymore.  I tried to focus on the film again.  Then I started thinking, What was that like for her, for me to turn my back?  Did she care?  What did she think?  Did she notice at all?  If she did notice, was she making incorrect assumptions about why I moved? I hoped she didn’t think I didn’t like her, or feel rejected.   All while these thoughts invaded my movie time, I prayed she didn’t sneeze again.  She didn’t.  She coughed, loudly.  I felt angry.  How dare she bring her bugs to the cinema.  Get real Janino, everyone sneezes and coughs.   Sh*t, sh*t and triple sh*t.  I buried my head in Hubby’s jumper.

I started debating whether there was any point in turning away, covering my face with the folded tissue, trying to prevent bugs access to me and my vulnerable body? The little blighters get through anyway if they are going to…after all, most bugs are small enough to pierce a basic mask.  That’s why I wear two masks whenever I’m on a plane.   Picking up bugs, its unavoidable at the end of the day, isn’t it?  Getting sick is probably unavoidable too.  All I can do right now is keep giving my body the best chance of fighting off infection by eating well, being kind to myself, doing what I know to do to support my body.  Accepting I’ll pick up bugs sometimes and focussing on the film is probably more helpful than getting angry and worrying about preventing any imminent attack.

We are under attack, by BREAD!

Did you know that there appears to be a big, big problem with much of the wheat we eat around the world – it is TOXIC!  This is crazy, right?  Glyphosate (in Roundup !!!)  is used by conventional farmers, who spray it on their fields between plantings to reduce weed populations and for drying out grain and bean crops so the yield is higher.    Did that sink in?  A toxic weed killer is sprayed on much of the wheat that ends up in the bread we eat!  What’s more, it has been sprayed on our bread FOR YEARS: bread that most of us have had in some form or another, EVERY day.

I’m so shocked!  And angry!!  The Netherlands have banned it.  France are changing their legislation about it.  The UK soil association is trying to get the UK government to do something about it.  While the whole debate is becoming highly politicised there is evidence for the toxic cumulative effects on people’s health!!!  Check out the articles below.

Frankly, I don’t eat a lot of non-gluten free bread these days anyway but I’m certainly going to try and go for organic only now too.  I dont fancy consuming ANYMORE Glyphosate or Roundup!  It is so damn hard to avoid toxins in this world!  Or to know who / how to trust food producers.  It will be so expensive if, to keep ourselves well or prevent disease, we return to buying EVERY food item at a speciality, boutique, or independent provider.  Most of us simply can’t afford to do that, or it is impractical, even when we are able to work full time and whether we have cancer or not.

We live in wonderful times.  We live in scary times.

I miss my brolly.

Check out these articles

The Scientist –  How Toxic is the World’s Most Popular Herbicide Roundup?

https://www.soilassociation.org/our-campaigns/not-in-our-bread/

https://www.sourdough.co.uk/glyphosate-in-bread/

Acknowledgements:

Photo of the new version of my old brolly by http://davitcareditions.blogspot.co.uk/2010/11/jaguar-merchandise.html

Photo of sliced toast by Manki Kim on Unsplash

© 2018 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Nutrition for Cancer, Psychology for Cancer, Symptoms and Side Effects Tagged with: Bread, Cancer, Cat, Gluten, Jaguar, Myeloma, Nutrition, Psychology, Toxins, Umbrella, Wheat

Arnie and Self Sizing

Dr L turned to his colleague and said, ‘for someone with Myeloma, Janine’s immune system is a Schwarzenegger’.  Hey Arnie, you are now a metaphor for my health status.  Who’d have thought?!  It sounds so positive and I am very grateful that my precious physical self is coping so well with the toxicity of Chemo.  I notice too that I get a little hung up on the ‘for someone with Myeloma’ phrase though more about that in the next post.  Now, I want to talk about my relationship with my body.  It has become a bit confused.

Can I share a secret?  I liked it when cancer, chemo and a diet change caused me to lose weight.  I like being closer to 60kg than 70kg.  I like how slim and less pear shaped my legs look.  I like being size 10 and for a few weeks, size 8.  All my life, I have valued being slim, strived for it.  I’m not obsessive.  I don’t over exercise or starve myself or think about it constantly.  Even when I put on two stone from IVF treatment:  I hated it but didn’t panic.  The weight had context.  Once we stopped IVF treatments, I lost a stone quickly and then worked on chipping away at the rest.  I like cake.  I binge occasionally (or did before this new eating regime). Who doesn’t when there is a pack of dark chocolate hob nobs in the house and the hormones are taking over?  I would say I’m weight and health conscious with no extremes.

I’ve never liked my arms: they’re too big.  Well, apart from the time I sanded every spindle on a stair case by hand: my arms were toned, like Madonna’s or Geri Halliwell’s.  I thought my arms looked great after that.  It didn’t last long.  Finding tops and elegant shirts to fit my arms has always been a hassle.  The welcomed side effect from cancer, chemo and clean eating has been the slightly thinner arms and shirts fitting, for once.  I don’t really want to give that up yet…

I find myself struggling.  I’m in a tussle inside my head.    Too much weight and muscle loss is not healthy, not helpful and goes against Dr L’s advice.  He explained that he had noticed that people with Myeloma who keep up with the gym and have some muscle reserve seem to manage the chemo better.  I do want to live as long and as well as I can.  Yet I find myself loving my new size.  I bought a pair of boyfriend jeans a few months into treatment, laughing with a wave of pleasure when I discovered I could fit into a size 10 only to find they slipped off a month later and I’d lost even more weight.  Now what do I wear?  Nothing in my wardrobe fits!!

At that point, 61kg, it did get a bit worrying.  My face was looking drawn.  My rib cage and spinal vertebrae were a too visible.  I promised Dr L that I wouldn’t let my weight fall further.  I expanded my food repertoire slightly (good quality bacon, goats cheese, sourdough toast occasionally) and started the weight training.

Back at the gym, I felt good and waves of relief from feeling stronger.  I’d become so weak.  I was asking hubby to open jars and water bottles for me and lift anything.  This does not fit with my independent and equality philosophy.  Yet, I dislike how quickly my leg and arm muscles grow.  When my weight started to rise slowly I would find it hard to like what I saw in the mirror.  I know it may seem silly in others’ minds. Intellectually, I know I look ‘normal’, ‘healthy’ and would still look heathy even if I did put on weight  (I’m fortunate to be tall). Except, somehow it feels like a tug of war in my brain – Janine, don’t put on more bulk, you look good as you are (now size 10-12) versus Janine, you need more muscle and strength to manage Chemo effectively, get yourself to the gym.

For more years than I care to think about, I have gone to buy clothes and come back disillusioned when I have needed that elusive size 13 or 15.   It seems crazy to have the same problem at a lower size (now 9 or 11) and with the added complication of my size constantly changing.  I can’t afford and wouldn’t want to invest in new sets of clothing every few months yet as my weight goes up and down on chemo, what can I do?  Frustrating.  I hate being uncomfortable in clothes.  I really dislike ill-fitting clothes that don’t help me feel good and enhance how I look in the world.  Too loose is as bad as too tight!

Even more annoying, last summer, before diagnosis, I bought some new clothes after ‘making do’ for a few years.   Now they are sitting in the wardrobe, barely used as they are far too big.  I am in the maintenance phase of treatment, with 3 days rather than six days a month of Chemo and my weight is climbing and fast.  I’m 67kg today.  Maybe I’ll need those ‘larger’ clothes again in a couple of months.  Except, I don’t really want to get any bigger or go back to the size of those clothes again.  The 6 days of steroids each month may have something to say about that.

67kg.  Nothing to worry about.  Yet, I don’t feel good about it. I am beginning to worry that a steroid induced, sharp trajectory up of weight, will set in and hang around for the duration of treatment.  There are 16 months to go!  That’s a lot of weight gain.  That makes me feel sick.

It is also motivating.  I’m back on the high veg and protein regime.  A few bits of non-clean eating crept in as I celebrated getting through the first 48 (see previous blog) and 9 months of treatment.  Then I let the goodies stay, it was Christmas after all.  Then I felt sorry for myself with the arrival of two viruses back to back.  January came and went, and it’s always the toughest month in UK for me.  It’s so often grey, cold, hibernation inducing and all I want to do is eat comfort food!

Oh well, not having the clothes I would like, in the bigger scheme of things, is insignificant really.  If I hover around the 65kg mark and I am made of tiny Arnie style muscles, that will be good enough.  Viruses and January blues are gone.  The revolution is here.  February has arrived.

I’m back on track with preventing my body from being a perfect host for cancer.  I celebrate a new food focus: FISH.  It is easy to do: I am languishing on the beautiful beaches of ANTIGUA for a much-needed holiday.  Fresh snapper, mahi and octopus are on the menu.  The company is great (hubby and besties), the sun is high, the sea is warm and the forecast is rosy.  No time for weight tussles now: The bikini is out and about!

Acknowledgements:

Antigua seascape: Photo by me

Legs and kettle bell: Photo by Maria Fernanda Gonzalez on Unsplash

Clothes hangers: Photo by Christian Fregnan on Unsplash

Shirt and Jeans: Photo by Lyndsey Marie on Unsplash

Muscles: Photo by Alex Boyd on Unsplash

© 2017 Janine Hayward www.psychingoutcancer.com.  All rights reserved.

Posted in Chemotherapy for Myeloma, Finance and Cost, Psychology for Cancer Tagged with: Cancer, Chemotherapy, clothes, muscles, Myeloma, weight