Category: Symptoms and Side Effects

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

On Track with Five Minutes

Last week and this week have been soooo much better.  Less tears.  While the black cloud of overwhelm still lurks, I feel calmer, less irritated by everything, and more able to make a healthy choice in the moment.  Five minutes, have been my saviour.

I’m no perfect human, no magician.  Getting back on track isn’t easy.  Getting back on track – isn’t instant.  It’s not about righting wrongs overnight.  It’s not about becoming superwoman again; getting into action with everything on the ‘crazy to do list’.  It’s not about suppressing the negative thoughts, ignoring the fatigue or pretending to be happy.

Last week, my best achievement was deciding to commit.  Commit to doing, what I know to do, to lift low mood.  Then doing it, for five minutes at a time.  Yes, five minutes.  Anymore time is a bonus and not mandatory in anyway.   A big commitment?  Yes!

In the face of depression, difficulty concentrating, fatigue and everything I acknowledged in last week’s blog, yes, making ANY decision, taking ANY action, takes something.  Some days, brushing my teeth, having a shower or putting on clean clothes is a commitment.  It takes valuing myself.  It takes being in the moment, one step at a time.

I’m worth it.

I’m worth investing five minutes, once per day or eventually five minutes, six times a day, to do the things that help and help me, to feel more like me.  It’s not easy and I know I go on about it, being compassionate with myself.  I try to not buy into my ‘I’m not good enough’ belief, when I don’t manage five minutes one day or I only (loaded unhelpful language) manage five minutes a day.  This is super important and the key to keeping the commitment to doing five minute wonders.

On my first day of commitment to five minutes of healthy, helpful actions, I brushed my teeth, washed my face, and got dressed – tick.  I got myself up the hill, to my blood test appointment – big tick.  The rest of the day passed somehow.

On my second day of commitment of five minutes, I managed to go back on to the website I’d had so many problems with and order the muscle builder protein recommended by the Nutritionist.  Its arrived and I’ve tried it.  It tastes ok and hopefully will work well for me!

It feels good to get back on track with healthy eating; one step, one five minutes, one day at a time.  This doesn’t mean I beat myself up for the sugar filled chocolate bar I had yesterday while at Chemo.  It means I patted myself on the back for eating well for the rest of the day, for not eating any more processed/refined sugar all day and for achieving my calorie count target for muscle building.

On my third day of commitment I managed to go to the gym!  The gym!  I went for five minutes on the cross trainer; I stayed 20 minutes.  I was very tired but felt pleased that I had gone.  It felt good, to feel pleased, about something.  I went for another five minutes, two days ago, stayed 45 minutes and had more energy.  I loved the sense of achievement, of being good to myself, doing what I know is important for me to do; build muscle so I can manage the cancer and the treatment as well as possible.  It was ok to feel tired later that day.  I felt calmer which was a bonus and good to notice.

On another day, for five minutes, I thought about my values, aspirations and those things I used do that gave me pleasure.  I looked at whether I had been taking any actions in these areas.  I wrote a list and planned some five-minute actions – not all of them for one day; one five-minute action per day.  Yoga is near the top of the list.  Up until a few months ago, I used to do this, a lot, each week, at home mostly, with the wonderful Adriene on YouTube.  Interestingly, five minutes of yoga hasn’t made it back into my world yet.  That’s ok.  I don’t have to do everything all at once.  Maybe next week will be the week I commit to five minutes of yoga, on one day, and then another, and possibly another.

Yesterday, I did something that really makes me feel joy.  I had an Italian language lesson.  I didn’t worry about whether I was smartly dressed or had make-up on; my teacher doesn’t care.  She cares more about whether I am having a chance, making the time, to listen to Italian every day; she doesn’t make me wrong when I haven’t.  I loved it.  I felt genuine pleasure when getting something right and even when I got something wrong and understood why.  I have learned Italian on and off for years (more off in recent years as academic work took over) and it feels great to be doing something that is so important to me.  This was a powerful step forward in lifting my mood.   Now I can plan five minutes of listening and Italian language practice every day.  It doesn’t have to be more.  Seriously, a five-minute commitment works wonders and is much easier to contemplate than an hour!  If the hour of practice comes at some stage, well that, is simply a bonus.  If I don’t do the five minutes every day that’s ok; every day that I do it, is a good day.

Overwhelm still hovers.  By the end of last week, I noticed I taken on too much.  I tried to allow time for rest, quiet, peace yet the time in between five minutes of healthy action didn’t always or often, feel restorative.  Planning five minutes of deep progressive muscle relaxation is now on the list.  Sitting outside for five minutes and deep breathing is also on the list.  The list doesn’t have to rule the show; it’s just a tool to remind me of possibilities for five minute wonders.  Things to try that I know have worked well in the past or may work well now and in the future, if I give them a go and commit for FIVE minutes!

A fine balance, this doing versus not doing too much.  Time for simply being is important too though when it rolls over into dwelling, rumination and avoiding, it no longer is being.  Socialising and avoiding withdrawal from others is super important for lifting low mood.  Getting back into the world is key.  Five minute excursions outside my house to the local café, newsagent, supermarket, anywhere where I need to navigate around and be with people for five minutes; it all helps me reconnect with the world.

On the flip side, when friends suggest a catch up, getting myself there is really hard some days, especially on those days when I feel like I just want to rest, sleep and keep sleeping.  Staying only five minutes might also seem strange but when I frame it like that, telling myself ‘I’m going for 5 minutes’, it helps.  Letting my friend know upfront that I hope to stay longer but a short time might be all I can do, is perfectly fine too; good friends understand.  Right now, too many commitments each day or on consecutive days is unhelpful; overwhelm can loom large.  I’m taking it a little slower than I was, before this patch of overwhelm hit.  Now the dark clouds are slowly lifting, I am taking my time with it, giving myself time and space to get back to feeling like me.  I try to remember that saying ‘No’ or consciously choosing to NOT ‘do something’ can be a valid action too.

Five-minute actions, being social in a manageable way, doing things that make me feel good, feel pleasure….that’s what I’m working on.  Smiling is back on the menu.  Five minutes of smiling behaviour can work wonders too.  Remember this isn’t about pretending to be happy.  This is about your body and mind experiencing a smile: physically, chemically and eventually, emotionally.  Right now, it’s a practice, a behaviour, not a spontaneous event.  I’d forgotten about the power of smiling behaviour and that’s ok.  I’ll do that five-minute wonder, today.  In fact, how about now?

Acknowledgements;

Editorial Support: Stephanie Kemp

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

Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: Behavioural Therapy, Commitment, Depression, Five-minute, Mental Health, Overwhelm, Psychology, Wonders

Vampires, Angels and Twiki

Hooked up

My blood spurts everywhere like a regular Fright Night or Halloween movie.  The nurse is trying to put a cannula into each arm, a bloody big cannula, much bigger than my normal (ha ha) Chemo cannula.  The nurse is new to this treatment and seriously nervous. Great. I’m not in the mood today. The mood.  The mood where I am happy to be part of someone else’s learning curve.  I’m just not.  Now she’s made a mistake and there is blood everywhere.  My blood.  My very, very, precious blood.

Another nurse pounces with a clamp and gets everything back under control.  For now. Except, I feel sticky.  My leggings and legs are spattered with blood.  The pillows and bed coverings are no longer pristine white. Stressed, I blurt out, ‘I don’t want to be anyone’s experiment’.  The nervous nurse (NN, my nickname for her) looks horrified. She reassures me that I am nobody’s experiment. Her body language and voice sound like she is trying to convince herself that everything is OK.  I think ‘I can’t afford to lose any more blood; get me someone who has done this A LOT’.  But I don’t say this out loud.  I hope it, instead.  I calm down a bit and give NN, a smile of, ‘it’s ok’. It’s not OK but I figure I need her to be calm.  Everyone makes mistakes. In the grand scheme of Myeloma treatment, this wasn’t a bad one (so long as I don’t end up needing that runaway blood).

I am in the Apheresis unit, finally all wired up (ready for ‘take off’?) to a clever centrifuge machine (very CSI) labelled 3OJO (MOJO with a 3?  A machine with 3 times the MOJO?).  Anyway, this machine specialises in taking blood out of one arm (Vampire-esq), separating out plasma and stem cells and then giving what remains of my blood, back to me, through the other arm (Angel-like). Genius! my niece would say.

I try to relax.  The machine’s sound reminds hubby of ‘‘beedie beedie’ so we nickname it, Twiki, and completely ignore the OJO’s in the end.  Do you remember the TV show called Buck Rodgers? Twiki is a silver robot (cute but with unfortunate haircut) known in the show for saying ‘beedie beedie’ to everything.  Very effective.  I’ll think I’ll use it.

Twiki with a lot of mojo (Stem Cell Collection machine)

All the fancy stuff Twiki monitors

I’m quite intrigued by my blood and its component parts…hanging in a bag next to me is the plasma, a funny yellow colour and next to it, slowly, salmon pink (apparently, that’s a good colour) stem cells appear.  Also on the line in bags are saline (isn’t it always?) and an anti-coagulant.  My lips begin to tingle strangely and I feel a bit faint.  I let the nurses know.  They have warned me this can happen.  My calcium level is ramped up and I’m lowered down a bit in the bed.  A song pops in to my head…Blood, Blood, Glorious Blood…There’s nothing quite like it…My Glorious Blood.

Boredom kicks in for hubby soon after arrival, I’m not very talkative today.  I can’t sleep because to help collection along I am required to pump the stress ball, all day, only taking breaks for a few minutes every 10-15 minutes.  Hubby checks out all the bells, whistles and knobs on Twiki and marginally resists touching them (knobs after all) and is now entertaining himself by dancing on the spot.  I’m trying to work out which music he’s listening to because he occasionally is singing out loud, unintentionally I think, and boy his lyrics are dubious!  The nurses and I catch a look and laugh.  Glad he’s got a day job!  Though I’ve secretly always loved his dance moves.  I still can’t work out which songs he is listening too.  Turns out he’s immersed himself in 70s and 80s and he’s running through Hall and Oates hits (would never have guessed).  We share headphones and have a laugh with the past.  Today is turning into a retro day.

I arrived at 8.30am and it’s now 5pm and I too, am very bored; so ready to be out of here.  I’m waiting for lab results to come back and say they’ve taken enough stem cells. For the last four days, I’ve had G-CSF injections that stimulate the stem cells to move out of my bone marrow and into my blood so Twiki can collect them.  This is preferential to the other option of having them collected directly from the marrow (painful, long, more chance of complications, I suspect).

The injections have some seriously weird side effects; they cause pain from inside my bones (ironically similarly to the way Myeloma does…there are so many ironies with this overall treatment process, seemingly making things worse in order to make things better!).  At random points, shots of pain would pulse from my rib cage or my pelvis, take my breath away and stop me in my tracks.  It would usually be gone within 5-10 minutes and then be back again 10 minutes later or half an hour later or whenever it decided!

Lab results this morning told me the injections had ‘done their thang’ and the detectable level of stem cells in my blood (CD34+ test) was well over the count required to go ahead with Twiki’s collection manoeuvres.  Thank goodness.  The collection target is 7 million stem cells per kilogram of body weight and I hope it can be done in one hit, today.  The results come back and they are good but I still need to rock back up tomorrow (and take another injection).  They have collected 5 million.  A few more are needed.  Hubby and I walk home slowly.  I feel shattered.

I’m baaackk!   The next morning is a funny affair, no more escaping blood and instead a new approach.  Yesterday’s senior nurse seemed to be cautious in approach, going slowly and setting things up so blood clotting was avoided.  Today’s senior nurse explains she prefers to deal with problems when they arise and ‘we’re going to go for it’ and monitor everything carefully.  Funny, I thought coming in two days in a row for the same treatment would ‘be the same’; a standardised process.  I hadn’t factored in the human element and the nurses’ different strategies. Today’s target is 3 million stem cells per kg of body weight so info is plugged into Twiki and I lie back and ?? think of England?  More like think ‘please please collect everything needed quickly’.  It’s an all-day affair again.  My potassium and calcium levels need propping up so I go home with extra meds to add to my ever-growing list.

The call comes through an hour later; they’ve collected another 5 million.  Excellent that’s 10 million stem cells altogether.  They’re sent off for cryopreservation (storage in liquid nitrogen at some crazy temperature, −196°C).  I’m relieved.  Maybe that’s enough for three transplants in the future.  Maybe I’ll live longer thanks to these.  If that’s the case then this last week has been a tiny investment; completely worthwhile.

Turns out from discussions with my clinician later that three transplants are not routinely given at the moment and there is no evidence supporting their benefit.  Instead, the transplant team would usually spilt the 10 million stem cells gathered into two larger lots, for each of the two transplants.  Supposedly there have been some benefits found for higher amounts of stem cells being used per transplant.

Oh well, you never know.  By the time, I need the second one maybe they won’t need as many cells after all and I can eek out another transplant.  Or my transplants will be so successful I won’t need a third one.  Or it will be what it will be, completely in line with current evidence and practice.  I’ll worry about that when it happens.

As part of the clinical trial I am on, I’ve been randomised to another four months of chemo (Carfilzomib, Cyclosphamide and Dexamethazone, half the Dex dose than in the previous four months) rather than an immediate transplant.  I don’t need to worry about the transplant details right now unless something goes a bit wrong and the Myeloma comes back with a vengeance sooner rather than later (after all it is always going to come back).  I crash for two days (the cat loves it) and feel really shattered for the week.

Post collection rest

The good news about my Myeloma is that its presence in my body after the first four months of Chemo has dropped; the IgG kappa paraprotein level is down to 6g/l after being as high as 42g/l.  It’s not quite the 100% response rate I was hoping for but it is damn good.  It is not usual for this rate to rise again for a year.  I’ll have regular tests and jump on it if it decides to buck the trend.

I’m a bit low in mood and I think this is mainly due to low potassium and not knowing what the next phase of treatment is.  Dealing with uncertainty is tough and coping well with it, ebbs and flows.  That’s normal.  I have talked about this in previous blog posts.  I’m also nervous (my turn).  I have a pet-ct scan coming up this week.  Will the radioactive sugar stuff sent into my body find new lesions in my bone marrow, new weak spots or confirm that the treatment has worked brilliantly so far?

Maybe it is a good time to explore my relationship with illness and health.  I can step out of project mode for a moment, round one of treatment has been accomplished.  Now, is as good a time as any to face asking myself, in a more structured way, what it means to have incurable cancer, what it means to be ill.  Which factors, which thoughts, beliefs, feelings and sensations are influencing my health behaviour, my coping…and not coping?

Psychology

One established psychological and behavioural model for explaining how we think about, respond to and manage threats to our health is Leventhal’s common sense model of self-regulation of health and illness¹.  Here are three of the concepts at the heart of the model.

1. our perceptions of our illness directly influence our coping strategies, which in turn influence outcomes.
2. our perceptions and resulting mental representations of illness and health threats have two parallel processes, a cognitive representation (our beliefs about; our identity, causes, consequences, timeline, coherent understanding and control/curability of our illness) and an emotional representation (our fear, distress, anger, worry, depression, guilt or other affective states). We use these mental representations to make sense of threats to our health.
3. we actively engage in problem solving by testing coping strategies (aimed to manage fear from emotions, and danger from cognitions), and checking whether the coping strategies have worked, to help us reach goals (e.g. to overcome cancer, to survive as long as possible, to overcome anger and be the person we wish to present to the world/think ourselves to be despite illness or to be well enough to play with our children every day)

The model is one way of explaining how we go about reducing the tension that arises between holding on and letting go of important values and goals as we come under threat from ill health, disease processes and treatment impact and side effects.  Figure1 below shows this in a bit more detail.

I thought I’d use this model to explore my thinking, beliefs, biases and assumptions about my current health.  If you are managing pain, chronic illness, cancer or caring for someone who is ill, I hope you find it helpful to ask yourself similar questions.  I encourage you to notice the thoughts that pop into your mind without judging them; they may surprise you.  When I work with clients who are living with ill health using this model, they often discover something that they had no idea was influencing their sense of self, or making them feel worse or they discover a rule they had imposed on themselves, based on an unchallenged belief about what it means to be unwell or to be going to hospital or taking medication.

Where to start?

I start by asking myself;

what does ‘health’ and ‘being healthy’ mean to me?

what does being ‘ill’, ‘ill health’, ‘being sick’ mean to me?

Do these concepts mean different things when I think about myself versus when I think about others?

What does it mean to be diagnosed with cancer? With Myeloma?  What does it mean about me that I have been diagnosed with cancer, with Myeloma?  If it was my partner or a stranger with the diagnosis how would the meaning of having cancer/Myeloma be different?

Figure 1. Hagger and Orbell’s (2003) schematic representation of

Leventhal’s (1980) Common Sense Model of Illness (CSM).²

What do I ask next?

I explore a range of questions with myself about the mental representations I have about being unwell and under threat from cancer.   While I work through each question and consider my answers, I also explore how my responses make me feel and what I will do to cope with the event and the feeling.

Stimuli

What am I experiencing?

What are my symptoms? (e.g. pain, fatigue, breathlessness)

What is telling me I’m unwell?  (test results, pain, reduced mobility, hospital appointments)

What do I know about my illness?

Where is my information coming from? (external: medical team, support groups, google, other patients; and internal: physical and mental experiences)

What are my symptoms? (e.g. pain, fatigue, breathlessness)

What is telling me I’m unwell?  (test results, pain, reduced mobility, hospital appointments, calls from medical team)

What do I think about where the information is coming from?

Cause

What do I think has caused my illness?  Do I think any of it is my fault?  Someone else’s fault?  How has my illness come about?  What do I think about the cause/s?

Consequences

What are the consequences for me, of my being diagnosed with cancer? From being unwell?  What will I be able to do and not do?  Will my life change? How will my life change?  How will my relationships change?

What are the consequences for others of my being diagnosed with cancer?  From being unwell?  How will their life change?

Control /Curable

How much control do I have over what is happening to me? Over being sick?  Over getting well?

How much do I think and believe my illness is; curable? able to be overcome? able to be managed well?

What do the consequences of the illness (e.g. likely outcomes, treatments, having to have chemo, a transplant, hospital visits and beyond) mean about who I am? what I am? My capabilities? My sense of being a woman? A daughter? A wife? A lover? An academic? A clinician? An exercise bunny? A coffee lover?  Looking at all the aspects of my sense of self what does being ill, having cancer mean for each of those and who I am?  No change? A change? For better? For worse?

Timeline

How long will I be ill?  Will any changes and consequences be temporary? permanent? If my life changes will I be able to change it back once I am well or coping with the illness? Will it be the same as before?

Emotions

In addition to any coping strategies captured while gathering responses to the questions above…

How do I feel overall, right now, today?

How do I feel about being unwell?  How do I feel about having cancer?  How do I feel about each aspect above; the causes? The consequences? My sense of self? The controllability? Curability? How long I’ll be unwell? How do I feel about each of these?  How do I feel about my thoughts and beliefs about each of these?

Coping strategies

In addition to any coping strategies captured while gathering responses to the questions above…

How will I cope?  What am I trying? What makes me feel better? Feel worse?

What will I do?  What will I avoid doing? Will I ask for help?  From who and where will I ask for help?  What will I practice thinking? Not thinking about?  Where will I put my energy?  What will I focus on? Avoid focussing on?

What emotions will I allow myself to express?  Are there any that I am not happy to express?  Why?

Appraisal of coping so far

What has worked well so far? What helped the coping strategy to work well?  What hasn’t worked well? How did it not work well?  What were the outcomes?

What do I want to change, try next, no longer try?

Working through these questions and using this type of model is challenging to do alone and isn’t something that is likely to be done and dusted in one sitting or even one day.  It may take time to make the enquiry of yourself and find your answers.  Notice the answers that pop into your thoughts, into your head.  The answers may be scary sometimes, difficult to acknowledge or leave you feeling upset and distressed. 

It is important to be kind to yourself during this enquiry.  Its ok to take breaks.  Its ok to feel distressed after noticing the answers.  It’s a good idea to do something nice for yourself after working through these questions.  These are difficult questions for anyone to look at, let alone anyone who is living with ill health or a life-threatening health concern. 

Remember the aims of making the enquiry is to

• understand how we are making sense of our own health, ill health, diagnosis and health journey
• notice the factors influencing both our coping strategies and our appraisals of the outcomes from our chosen methods of coping.
• identify coping strategies that are likely to be most useful (complement our treatment and enhance our behaviour and management of illness, Myeloma) and drop the strategies that don’t work so well

Ultimately, by bringing our mental representations into our consciousness, our awareness, we may be able to pause and challenge some of them, more easily accept others, and create and foster new helpful health representations.

Many patients perceive they can stand extreme toxic Chemo therapy when they also hope and feel that it may result in a cure.³ There is no cure for Myeloma so how do Myeloma patients, how do I, stomach Chemotherapy? Do I stomach it because I hope it buys me time for living and time for a cure to be found, or buys me less pain, less discomfort, more quality of life?  How am I managing fear control and danger control?  What are my representations of illness?  How vulnerable am I?  How motivated am I to take self-protective steps?  How easily accessible is my motivation?  When is it easy, when is it difficult, for me to do the right things, to look after myself, adhere to medical advice, and adhere to the other complimentary advice I have chosen to follow?

Watch this space – I’ll post my answers over the next week or so to give you an idea of what this type of enquiry might look like…and then I’ll talk about what you might do with knowing your answers – how bringing the answers into your consciousness can help us to better manage the challenges that face us, illness based or otherwise.

Right now, I need a break so I only have one answer for you…

Beedie Beedie.

References

¹ Leventhal, H., Meyer, D. and Nerenz, D. (1980). The common sense model of illness danger. In: Rachman, S. (Ed.), Medical psychology, Vol. 2. pp. 7–30. Pergamon, New York.

https://www.academia.edu/259452/The_Common_Sense_Representation_of_Illness_Danger

² Hagger, M. S., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and health, 18(2), 141-184.

https://www.researchgate.net/publication/250571403_A_Meta-Analytic_Review_of_the_Common-Sense_Model_of_Illness_Representations

³ Cameron, L. D., & Leventhal, H. (Eds.). (2003). The self-regulation of health and illness behaviour. psychology press.

https://books.google.co.uk/books?hl=en&lr=&id=P3UoIuANmrIC&oi=fnd&pg=PR8&dq=The+self-regulation+of+health+and+illness+behaviour.+psychology+press.&ots=ARDdFKnVmY&sig=hU9R0fsNauKIs04RB3iezy-yAyA#v=onepage&q&f=false

Posted in Myeloma Treatment, Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: Apheresis, Cancer, Clinical Trial, Fatigue, Harvest, Myeloma, Para Protein, Psychology, Randomisation, Stem Cell Collection, Therapy, Transplant

Chemo Cycle Four – Brain on Fire

I’m going to be sick. I’m running to the bathroom. I’m not going to make it.  I’m scanning for basins and thinking use the kitchen if I can’t make it to the bathroom.  At least make it to the tiles, it will be easier to clean up.  I make it, this time.  While I’m trying to keep my hair out of the toilet bowl and not notice how sore my knees are on the floor I start thinking; Where did this nausea come from?  The last three months have been relatively easy; is this what Chemo is really like?  Is this the nausea others talk about?  Well they can have it back; it’s awful.  And it’s not the worst thing.

I slowly make it back to the couch and lie down.  I’m wondering if this last month of induction treatment is worse because I have responded so well to Chemotherapy over the last few months, now there is less cancer to vamoose; more good cells are copping it.  I’m thinking about this when I notice my brain is getting hot.  Not my head, not like a headache; my brain. In fact, its not just hot, it’s getting hotter by the second.  My brain is on fire and I’m not sure I can cope.  My eyes feel heavy…and hot. I can’t keep them open but I feel sick and am going to have to get up any second to go to the bathroom again.  At this rate I’m going to need a couch near the bathroom or in it, not that it would fit.  My brain hell fire is getting worse and my body is screaming at me to close my eyes, sleep, now!

I can’t, I have to go back to the bathroom.  Ginger tea isn’t working this time. The anti-nausea pill isn’t working either.  This chemo experience is different, and besides, I can’t keep anything down.  So much for gaining weight or staying hydrated.  A bit hard to do when I’m vomiting.  I manage the journey to the bathroom, throw up and hang out for a while waiting for the next wave of nausea.  I have a picture of my brain burning bright yellow and red with solar flare flames coming off the top of it, searing their way out of my skull. My brain feels like it is about to explode.  It’s excruciating. Am I literally being fried with chemicals?  I make it back to the couch and succumb gratefully to sleep.

From 4pm to 2am I’m in the bathroom or asleep.  When I wake I feel trashed, tired but better.  I eat two rice cakes and marmite (love it or hate it, it has its moments) and manage to take my meds.  Relief.  I feel slightly normal again.  I watch TV for an hour and go upstairs to bed.

Sleep has been elusive over the last three to six months.  I often wake every 1-2 hours.  I am feeling a bit low and constantly tired despite the steroids.  Unsurprising really when I’m not sleeping well.  I talk to Dr L about pills and the nausea/brain fire.  He takes control and agrees sleeping pills are a good idea and proposes a second anti-nausea drug.  He doesn’t want me ‘putting up with’ anything.  Relief again.  I am finally going to get a good night’s sleep.  Florence pops into my mind.

Music; Dog Days are Over, Florence and the Machine

For the first three months/rounds of Chemo I’d had no anti-nausea help and found using simple ginger tea worked.  Now, I’m using two lots of anti nausea meds and ginger tea. The pfaffy thing; I need to remember to take the new meds 30-60 mins before food, three times a day.  More stuff to think about when there are already so many pills and supplements to keep a handle on and information about upcoming treatment to process.  Still, I’m highly motivated to prevent “brain on fire” and vomiting every five minutes – funny that.

The flag at Kings College Hospital is at half mast during my hospital visit, appropriately, for the victims of the horrendous attacks in London and Manchester.  I feel strange too; grateful for not being in one of my favourite areas of London, an old stomping ground, at the time the attacker was there and yet also wondering how I would have reacted if it was me the person with a knife had come after. Does knowing you are dying sooner than expected change how you might react in crisis? Would I have run or taken more risks? Thrown things at the attackers, tried to fight back or help those that had been stabbed? Who knows? I can’t know. I’m grateful in many ways for not knowing and yet I’m curious about whether I would be different now.

The rest of month four passes without too many glitches and the best thing is getting some sleep – hurrah! I’m a bit depressed about how much strength I’ve lost though, and how old I feel when I can’t undo a jar lid or carry something I’d usually be able to carry.   Weight training is now 20 reps of 1kg weights rather than three sets of 12 reps of a much higher weight. Fatigue is ever present.

This is not a novel new project anymore. The chemo, the eating regime, I’m over it. I want a break.

Editorial Support: Stephanie Kemp

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

Posted in Chemotherapy for Myeloma, Myeloma Treatment, Symptoms and Side Effects Tagged with: Brain, Cancer, Fire, Myeloma, Nausea, Sick, Side effects

Chemo Wk 3 – Bloody Business

Music: Fat Boy Slim – Where You Iz (Where you is, is where it’s at, and you can’t beat that with a baseball bat); Far L’amore (awesome dance track from the film The Great Beauty), VCMG Spock.

Medical Update:
Full dose Chemo plus new drug by intravenous Zometa (bone builder)
Follow up e-Coli urine test – all clear
Ferritin (iron) levels improved from slight anaemic to within normal range

Pin Cushion

Day one this week went pretty smoothly. S came and kept me company and we talked about her trip to Norway over the weekend. By 5pm I was very tired and my back around my weak T7 area (mid back) was sore though not hugely so. My slightly swollen ankles, dry eyes with eyelids sticking to the eyeballs didn’t phase me; eye drops and putting my feet up for a while helped with those. The coconut water added to my water bottles during and post chemo also seemed to prevent the headaches of last week. So, all good.

Day two was a slightly different prospect and once again I needed to find my voice. I’d been awake at 1am, 2.30am, and 3am before eventually getting up at 4.10am. The lack of sleep and waking up soaked through probably reduced my patience and tolerance level for the whole day. The rest of the day had started well; raced up for early blood test at 7.30, raced to get the lovely K to work his magic on my hair (why not have perfect hair for the last day of chemo on your first cycle!) and managed to get back on time for noon and my chemo appointment. Then the fun and games began.

A nurse I hadn’t worked with before tried to put in the cannula. She had trouble finding a vein and I know that can happen as Chemo goes on though I was somewhat sceptical at this stage. My arm and hands were warm so cold wasn’t the culprit. I thought about asking Nurse L to come and do it but thought I should give this new Nurse a go. She was sweet yet apologetic for everything and seemed slightly clumsy. A bad day? After two goes of pushing a needle into me only for it to be a bit painful and no vein was found, I asked if Nurse L could do it. To her credit the first Nurse apologised again and explained it was policy for exactly that to happen, that after two attempts to insert a cannula a different Nurse is asked to try. Interesting, that had not happened last week with another Nurse, G, who had rooted around until he found a vein on the third attempt. I would not let that happen again.

Nurse L came over and using the back of my arm got the cannula in first time, pain free. Got to love that woman. Next, when the original Nurse came to change one of the intravenous bags over, the cannula-to-bag connection broke (this had never happened before). Once again to her credit she apologised and explained saying the line may still have worked but to be safe she had replaced the whole line (fortunately the cannula could stay in place). I made a note to ask for Nurse L, Amy or M next time.

Blood

How often do you look at your poo or the paper you wipe your bum with? Who has time? Well I seem to be doing this a bit more, fortunately or unfortunately depending on your point of view. This week at about 5pm on day two, I spotted blood, quite a lot of bright blood on the paper and then in my stool. This concerned me, I so didn’t want to have an infection that would stop me doing this trip of a lifetime to Canada. I decided to see if it stuck around or went away. My temperature was fine so I didn’t panic immediately.

Evening snooze and Steroids were working their magic so I was still awake most of the night and eventually went to bed at 4.30am. Got up at 8am. Temperature was still fine but blood was still there. Felt cold and shivery flu like muscle ache symptoms but I’d been warned this might happen thanks to the Zometa so no panic there and felt better by 10am. Finally called the on-call Haematology Registrar at Kings and they suggested a watch and wait approach too so all fine. The blood had stoped after another day.

That may be because my body had bigger fish to fry; like killing cancer and hey maybe some nasty cancer cells went out with the blood. Now that was a nice thought. Ha, here you go nasties – ejected from Janine’s body forthwith, never to return, thank you! Die. Die. Die. I started singing my little ditty; “I’m killing cancer cells and saying sorry to the good cells that have to go with them”. It always cheers me up though I’m getting sick of the Nashville twang version. Might try rapping it next.

Extra supplies and tips for travel

Because my immunity is lower than usual I had been emailing and speaking to Dr L about how to look after myself while travelling and away. He sorted a prescription with some back up alternative antibiotics in case I got an infection and suggested I got loperamide in case of diarrhoea, paracetamol and also plasters to cover any small wounds. Sorted.

We also talked about masks. He explained that wearing a mask was very considerate of me regarding others though wouldn’t help me much. When someone sneezes or coughs and shares germs, it’s the tiny molecules at the end of the spray that get everyone and they are small enough to pass through a mask. I said I’d double up the masks. Dr L laughed and said “I’d rather you could breath!”. He did make some suggestions about how to adjust the aircon on the plane if I did find myself unable to move away from a germy splutterer which were helpful. He insisted the main thing was that I didn’t get cold, or pick up a cold or virus and he emphasised that I would be more vulnerable to this happening as the Chemo worked its way around my immune system. I tried to reassure him that I would take every precaution possible.

We said goodbye to S. It was time. Her hubby was missing her badly and his birthday was imminent. It was so good to have her here and she helped make the first month of Chemo bearable. Thank you Universe for aligning her visit with my need for extra special bestie help and support. Thank you S for making the longer stay happen. D, thanks for sharing her!

Psychology – Asking for Help

Asking for help is a strength. It is not a weakness. Asking for help does not mean you are weak or needy or less than; it means you are human. People need help to achieve big goals in life. The tennis player doesn’t reach his local team champs or the final of Wimbledon without the support of the person who had taught him/her to play tennis in the first place or the person who continues to help him/her play week in and week out, now; a coach, a tennis racquet stringer, an opponent. Many, many people help contribute to one person’s goals in life.

When you have a difficulty, big or small, asking for help is a powerful message and gift for others as well as for yourself. It lets people know they can contribute to you and that it is also OK for them to ask for help when they need it. You will not burden them; you can ask for help in a very specific way, with clarity about what you need and in a way that leaves them informed and free to choose. If they experience a feeling of burden, that is not your concern, it is their experience, and one they would need to manage by finding their boundaries and voicing them (in the same way you could if you had said yes to helping someone).

If you are open and honest with the people you are asking for help from, and clear about how you would like them to help, then it is up to them to manage themselves if they say yes to helping. So ask for help, especially if you are going through a complex health challenge like Cancer. You can ask friends, neighbours, family, medical professionals, your GP; ask to be referred to a psychologist, nutritionist, physiotherapist if you feel that would help you meet a need.

I have asked a friend to stay longer, to carry my urine, to research nutrition. I have asked my husband to help me to speak to my parents about the best time for them to visit and asked him to help me stick to who I want to be through this stage of the Cancer process. I have asked my consultant to answer seven questions at the beginning of each week of Chemo. I have asked the MacmIllan team for help getting referrals to learn about financial entitlements, access to massage and for a place to sleep between tests. I have asked friends to leave any sadness at the door. I have asked neighbours for referrals to a nutrition therapist and to take in parcels of books and food. I have asked my consultant for a referral to a psychologist and a dietician. I have asked friends to meet, to not meet, to forgive me if I’m not quick to respond to emails.

I HAVE ASKED FOR HELP.  HELP has been forthcoming from every angle. People often want to help and you can make it easy for them by letting them know what help you need. My asking has not been met with annoyance or judgement but with thanks and love. If you ask people to help in ways that you know play to their strengths then you make it even easier for people to help you though don’t let that stop you either, just ask. If they can’t help or don’t know how to help in the way you are requesting, it is up to them to say No or suggest an alternative way of helping that may meet your need and match what they can offer.

The right people around you, at the right time, with the right help for you and your needs, can be a significant and positive part of the healing process, so why should you miss out on that?

Acknowledgements

Images: Stephanie Kemp and Nurse L

Posted in Chemotherapy for Myeloma, Psychology for Cancer, Symptoms and Side Effects Tagged with: Asking for help, Cancer, Cannula, Chemotherapy, Myeloma, Psychology, Zometa

Pain

So now you show up.  Its 3.30am.  I’ve only had three and half hours sleep and now you have woken me.  Why now Pain?  Where were you before? Where were you when I was meant to have known you, during this stage one of illness that I seemed to have skipped? Are you Myeloma pain or chemo pain? Or universe forbid, something else pain?  and sheesh, why butt pain?  Is that your sense of humour?  If it is, you are not very funny.  Especially when my heat pack doesn’t stretch that far!

Though….now that I think about it.  Thank you.  Thanks for not showing up too much in the past.  Yes, I’ve been in and out of physio so much that it had begun to feel like a second home.  Friends sitting behind me in lectures were probably sick of my constant fidgeting and neck stretching.  Yet in the scheme of things, I haven’t been in much pain at all over the years.  I’m grateful for that.  You haven’t stopped me doing the things I love.  Until now.  I love sleep and would like some more please!!!

Interesting that you show up tonight when I’m also fasting for a glucose test in the morning so am probably unable to take anything for the pain.  Why is that?  Having been so kind in the past, are you now going to make up for it?  Will you get worse?  Will you always be here?  You do like to scare people.  Scare me.

Do you fancy some mindfulness?  I think you do.  I think you need some deep, slow, compassionate and kind breaths, deep into the heart of you so that is what you are going to get.  Take care Pain.  I suspect you and may have to become firm friends before I send you on your merry way.  Know this though.  Good friends are soul food.  They’re uplifting, inspiring, funny and kind so if you want to hang around for any length of time, you have to join that club.  There  is no room for draining and negativity here.  Come on then.  Let’s breath together and see what we can discover about ourselves.  You, me and breath.  Right here.  Right now.

Acknowledgements:

Illustrations: Sapphire Weerakone

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

Posted in Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: Breath, Cancer, Compassion, Glucose, Mindfulness, Myeloma, Pain, Psychology