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

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

Chemo Month Two – Worry

It’s been hard to write the blog in week’s four, five and six of Chemo; I didn’t know where to start, there didn’t seem to be time, and I was worrying.  Even Music didn’t show up much; I didn’t hear it or go looking for it – strange.

I started to worry about having little time; not time on this earth but time during the day to do all the things I needed to do. Sound familiar?  I have learned over the years that when I worry about not having enough time, it usually means I am probably trying to do too much and am not getting enough rest or chill space. I noticed too that when reminders popped up in my calendar to get some ‘headspace’ or do a visualisation, I was swiping them away and thinking I’ll do that later yet later never came. This worried me.   

I wondered whether my blood test results for week four would not be as good as the previous weeks and imply that going away to Canada had been a bad call after all.  It turned out this worry, while natural, was unfounded; my results showed more test results falling within the normal range than in the previous weeks and suggested my immune system was hanging in there – a good result. 

I worried about an interaction with a Nurse and found myself feeling ‘told off’, then wondering if I was being over sensitive, or not sensitive enough to others.  I felt guilty for coping well with and doing well on Chemo.  The nurse had asked how I was doing and I had said something along the lines of “really well thanks” and “chemo had been quick today”. I heard a response of “well that’s not the case for everyone”.  

Then a stream of thoughts flooded my mind;

• Sh*t, had I spoken too loudly?  
• A lot of people look very ill and drained on the Chemo ward today, have I not thought of them? Should I think of them?
• I have answered honestly and positively; that’s what I committed to do throughout this process wherever possible.  

Feeling a bit indignant, more thoughts rushed in;

• No, it’s fine for me to be positive after all it’s not my fault I’m doing well,
• Being positive is meant to help with healing so I’m not going to stop answering ‘I’m Doing Well’, when I am doing well.   

Overnight and with reflection I decided I probably was being a bit sensitive and it was also fine to be positive.  The following day I checked in with the nurse, who quickly reassured me that he had not thought I’d been insensitive to others on the ward at all. We cleared any misunderstanding and he reiterated how great it was that I was doing well.  This frank discussion helped bring clarity and perspective to my thoughts. It stopped this worry completely. I’m glad I raised it with the nurse even though I was uncertain (and nervous) about what I might hear.  

Despite this resolution, a residual sense of stress, worry and an over active adrenal system remained; the opposite of the many calm moments that I had been experiencing last month.  The overall worrying continued. 

My weight had dropped again to 66kg and I was struggling to eat enough calories. I often didn’t feel hungry but still tried to eat. I hoped my weight would stabilise and even climb back up to 68kg.  That weight had felt comfortable while now I noticed I didn’t seem to have much padding, wondered if I really did have much of a reserve if I got an infection and I noticed I had lost muscle mass. The backs of my hands look like some very elderly person’s hands; dry and wrinkly despite the constant fluid intake.  I worried that my weight would keep falling and my skin would get worse. 

I worried about whether I should stick to the plan of not working for six months to focus on getting to remission as successfully as possible or to work while I still could.  I worried about if I worked, would it be too stressful, leave me enough time to rest or feel like it’s getting in the way.  I worried about not being able to work out how much work was too much, and for private practice whether enough work matched with breaking even financially.  I worried about how to contain my clients’ concerns if my appearance changed with more chemo and how I provide a consistency of safe space for them if my medical appointments needed to change in the future.  I worried and yet I missed making a difference and being the psychologist I know I can be.

To cap off the week, I finally had a long-awaited Ear, Nose and Throat appointment (yet another hospital visit) to check my possible hearing loss.  This is something else I have been worried about for a long time and that has no doubt been bugging Si for years as I constantly ask him to repeat himself or need the TV volume well above the level he would choose.  I had noticed my hearing was worse when; I’d find it difficult in crowded places (and with background noise) to hear the person I was standing next to and speaking with, or to hear what someone was saying if I couldn’t see their face and mouth.  I noticed I had started guessing (not always accurately) what someone was saying.

For a psychologist; listening skills are imperative and before listening skills can be invoked one has to be able to hear! While I had rarely experienced these problems in one to one therapy sessions, I was concerned symptoms would get worse or impact my functioning.  Sure enough I wasn’t dreaming this either; tests showed my hearing has deteriorated though is still in the mild loss range; inner ear cochlear deterioration so unrecoverable.  This is essentially the kind of loss most people start experiencing from around 60 years old on…except I’m not 50 yet! I suspect I’m paying the price for good times; a burst ear drum while scuba diving as a teenager and damage from standing far too close to speakers at Fabric nightclub a few years back (ok, so quite a few years ago now).

So I’ve been worrying and it’s completely natural to worry.  It is not helpful to dwell in worry or worry about things I can’t control so how do I let go of it?  Worry is something I have helped many clients with over the last ten years so it is definitely time for some self-help.  Below are the psychology tips and strategies I reminded myself to use. 

Psychology – Overcoming and managing worry

What is Worry? How worry works.

Worry is a form of mental problem solving about potentially negative future events.  It can be triggered by a variety of external events or from thoughts that just pop into your head.  Worry is characterised by a lot of ‘what if’ questions. For example, ‘What if my Chemo doesn’t work?’  ‘What if my new boss doesn’t like me or think I’m good enough?’ 

Normal worry is usually short lived and leads to positive problem solving activities.  Worry becomes unhelpful when it is about several things, is frequent and difficult to control or dismiss.  We can think prolonged or frequent worry helps with problem solving, planning and preparation however worry breeds more worry (and anxiety) which prevents positive thinking and action.

Worrying can rob people of time. It’s exhausting and often leaves people feeling tense, with disturbed sleep, difficulties concentrating, and feeling irritable.  While sometimes it can feel appropriate or necessary, worrying is exactly the opposite; it’s restrictive, and takes up time, attention and energy that could be spent on useful, enjoyable and meaningful activities.  

Why do some people seem to worry more than others?

Worrying is human!  The causes of are not clearly understood though it may be that a number of vulnerabilities increase the chance of developing a tendency to worry excessively; prolonged stress, past experiences of uncontrollable or traumatic events, an inherited biological disposition to experience negative emotions, learned messages from others that the world is unsafe or that worry is useful, and a coping style that involves avoiding challenges or situations where there is a chance of experiencing negative emotions (which prevents positive experience of coping and positive emotions).

Managing worry. 

UNDERSTAND YOUR WORRY CYCLES – Understand your vicious cycles of anxiety and how avoidance contributes to anxiety.  See the handout below (CCI – Vicious Cycle of Anxiety).

NOTICE YOUR PAYOFFS AND COSTS.  Part of understanding your worry can be to notice if you are getting a pay-off from worrying, ‘buying into it’ and most importantly what the cost of the pay-off might be. Are you avoiding going out? You might get a pay-off of avoiding any negative emotions such as uncertainty of what will happen or be said when you see someone but you also miss out on the potential positive experiences; fun, laughter, connectedness or ease which going out may also provide.  Also notice, where do you worry and what are you doing when you worry. For example, are you sitting down and telling yourself ‘you are worrying but getting rest at the same time’.  Consider that your type of ‘sitting down’ in this instance is not truly restful and what it actually costs you is feeling rested.  If you shifted your attention away from worry to giving yourself permission for genuine rest, and allowed yourself to do something enjoyable without the worrying in that same time, you are much more likely to feel rested and relaxed (and be better able to cope with normal levels of worry that we all experience).

Other practical strategies:

USE A WORRY TREE to identify where to put your attention so that you shift your attention to worries you can do something about and form a plan for rather than worries you have no control over.  There is a link to a handout below

CHANGE “WHAT IF’ STATEMENTS TO ‘HOW’ STATEMENTS’. For example, instead of “what if Chemo doesn’t work?’ I might ask myself ‘How will I act if Chemo doesn’t work?  How will I find out what action can be taken next?’

POSTPONE WORRY.  This is where you give yourself permission to worry about a specific topic, at a particularly time later in the day, for a maximum duration of say 20 minutes).  This way you are acknowledging your concern and allowing yourself to think about it for a contained amount of time without it taking over and impacting the rest of your day.  Sometimes you may find the thing you were worrying about has resolved itself by the time the allotted worrying time has come around, or it looks completely different and isn’t as big of an issue as it seemed earlier or doesn’t have to be dealt with today after all. 

Summary

These are just some tips for managing worry and there are others if these don’t work for you. Remember, while worry is normal, excessive worry can be gripping and creep up on anyone.  Even when worry can feel like a good thing to do, it creates more anxiety.  When it stops you from enjoying life or doing the things you want to do, worry is not your friend.  Excessive worry can be overcome.  Please try the strategies outlined above and the links to helpful handouts below. If you find them hard to do alone, do talk with your GP or ask a psychologist to help with gaining treatment or to work through the strategies with you. 

Acknowledgements, Permissions and Helpful Handouts:

Centre for Clinical Interventions (CCI), Department of Health, Australia http://www.cci.health.wa.gov.au/

CCI Generalised Anxiety and Worry

http://www.cci.health.wa.gov.au/resources/infopax_doc.cfm?Mini_ID=46

CCI Vicious Cycle of Anxiety

http://www.cci.health.wa.gov.au/resources/docs/Info-Vicious%20Cycle%20of%20Anxiety.pdf

CCI Postponing Worry

http://www.cci.health.wa.gov.au/docs/ACF3D66.pdf

Get Self Help Get.gg – Worry Tree 

https://www.getselfhelp.co.uk/docs/worrytree.pdf

Images: Simon Hayward

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

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Chemotherapy, Myeloma, Psychology, Worry