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

Chemo Wk 1 – Part 2 – Piss Taker and Junkie

Medical Update:

FISH test – Myeloma cytogenetic analysis is an examination of the bone marrow cells to look for chromosome abnormalities.  It can be an indicator of likely worse response to treatment and lower life expectancy.

My result:  NORMAL (YIPPEEEEEEE!!!)

More low down:

Who knew cancer could be fun? Yes, it’s a whirlwind and it’s also a completely new project.  I always love the beginning of a project.  It’s the middle bit that’s hardest. Though somehow, I normally always find a way to deliver because non-delivery doesn’t really wash with me.  So, I have a new project: Understanding and Managing Multiple Myeloma.  I’m certainly not bored, there is so much to learn, do, research and action.  Using my brain and academic skills to work out a plan for handling this stuff feels great.  As Chemo continues, I add to my knowledge of how the clinical trial team works, how my Chemo works and how to get what I need from the hospital and hospital teams.

One of the questions that several friends have already asked is “how is Multiple Myeloma different from Leukemia?”.  Watch this space, I’ll do a separate post on this soon!

It’s been a funny old first week of treatment, especially trying to fill a ginormous container with my urine over a twenty-four-hour period and then, because I am not allowed to carry anything heavy, watching Steff literally ‘take the piss’ up to hospital for me!  Good to get rid of that, though urine seems to be a theme for the latter half of the week. I end up having to go to the loo every few minutes and begin to suspect I have a bladder infection. Oh yay.  Then when blood turns up in my urine too, I panic and think sh*t ‘this is not the start I wanted’; I said ‘smooth’ Universe please.  My first week of chemo is meant to be ‘smooth’!!

Thinking about the blood, I start to wonder if I had overdone the Tumeric.  After all, I had gone from barely using the stuff, to shoving it into everything because it is supposedly one of the best things you can do for yourself when fighting cancer.  (I’ll do a separate post re Nutrition later).  The previous day I’d added Tumeric to a green smoothie, drunk two Tumeric Almond Milk lattes and then had more in a curry.  I wasn’t in any pain when peeing, (phew) but the stream of red was rather disconcerting.

Anyway, it turned out Tumeric had nothing to do with it and I had managed to pick up an e-coli bug.  Lovely. Not.  Under instructions, I double my anti-biotic dose.  Still I was strangely relieved that Tumeric wasn’t the culprit.  The new Tumeric Almond lattes were meeting my need for a warm hot drink when out and about.  I have given up coffee and there are only so many mint teas you can drink before feeling like a herb.

I laughed when I got a Whatsapp message from Dad which was signed off ‘Live’ instead of ‘Love’.  Even good old auto text was getting in on this Cancer game.  Found myself singing to myself this morning, in a vaguely Nashville twang…”I’m killing cancer cells and saying sorry to the good cells that have to go with them”.

Discovered that two of my drugs are sitting in Lactose, something I’ve avoided for an age because I have been intolerant since a baby.  If I drink a glass of milk I end up with instant cold, phlegm and other nasties.  I talk to my consultant about alternatives but he’s keen for me to hang in there with them if I can; I resign myself to having a runny nose every day.  I do love some of the other drugs, especially the steroids.  Waking up with energy is such a novel experience for me.

Waiting to go into my second Chemo session, I send an email to a friend about all the great things to do and places to go in Italy near Naples and the Amalfi coast.  Fun reminiscing and good pre-Chemo therapy!

Psychology

I start thinking about the lessons I learnt from when I experienced a road traffic accident (RTA) years earlier (an unlicensed driver drove into me from behind, pinning me from the thigh down under his car while I was on my moped and stopped at a red light).  I had rushed back to work far too soon after the accident and worried about everything else except healing.  I decided that would not be the case this time.  This is the time for self-care, self-compassion, for allowing time to receive treatment and recover from it.  This is also the time to ask for help (another thing I did not do during recovery from the RTA).

Who do I want to be through this Cancer journey?  How might this change as the journey continues, gets harder?  I feel Psyched UP.  I don’t feel like a fighter or like I’m in a battle – I don’t really relate to or like those words.  I feel accepting, practical yet intolerant of anything other than managing this well and giving my body the best chance to overcome this challenge.  I reaffirm I want to be clever, clear and calm through this, for as many days as possible, for as long as I can, because right now that is what feels right.

I pick up the fantastic book Mindfulness for Health: A Practical Guide to Relieving Pain, Reducing Stress and Restoring Wellbeing by Dr. Danny Penman and Vidyamala Burch.  I have often used this successfully when working with my own clients.  I search for great visualisation and meditation tracks on you tube.  I download Headspace, the mindfulness app.

End of week one

A social end to the week.  Catch up with lots of lovelies from my psychology programme and receive an amazing goodie bag including a mermaid blanket!  I manage to go the gym.  Exercise feels good.  I feel good, happy; like a 70s hippy on Quaaludes.  Then I noticed the bruises and tracks on my arm and laugh.  Other gym goers who may have noticed me stretching left right and centre probably think I’m a junkie!

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

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Blood, Cancer, Chemotherapy, chromosome, cytogenetic, e-Coli, FISH, Mindfulness, Myeloma, Psychology, Tumeric

Chemo Wk 1 – Part 1 – Janine on Johnnies

Format for the update posts:

I plan to stick to a similar format each time for these update posts so you can find your way around easily.  The core aim is to let people know how I’m doing as the treatment for Myeloma unfolds, to talk about key medical milestones, challenges experienced and whether it has been a good or tough week overall. Other aims are to let you know what the experiences have been, how they have felt and how I’ve coped (or not) and the stuff I have done and used to keep going.

I’ll start with Music.  Music that has popped up over the week or that I’ve sought out to keep me going.  This will be followed by the medical update.  Then I’ll share the experiences, realities of the week and hopefully throw in a few funnies and highlights from beyond the cancer world.  Near the end, I’ll highlight the psychological strategies, techniques and psychoeducation I’ve drawn on to help me look after myself, manage what’s happening to me and helped me endeavour to maintain my resilience and psychological flexibility.  I may finish here or follow up on a point made earlier in the post or let you know what’s coming up next.  In between these update posts, I may share shorter posts in response to questions I’ve been asked or key events that warrant their own attention.

I hope this approach works for you.  All feedback is welcome.

So here goes, Chemo week one…

Music: 90s yeah! Rhythm is a Dancer, Snap: I’ve got the Power, Black Box, Music Sounds Better with You. Strike it Up. I Feel Love for the First Time.

Medical Update:

Week one, day one, up early to hospital for blood tests.

Met the fabulous Dr L and Nurse M.

Everyone happy with my blood test results so given green light to go ahead with Chemo.

Myeloma Presence (Baseline from 17^th Feb 17): 17% Plasma Cells, 60-70%infiltration on the trephine (bone marrow test).

Blood summary (for normal levels see picture below):

The low down:

Long and smooth day, started at 7.15 and done by 6pm. So relieved when Chemo could go ahead despite my possible bladder infection and need to pee every 15mins! Quite a juggling act.  Each time a bag of meds was detached I did a mad dash to the loo so I didn’t have to faff around with taking the drip line with me! I’ll explain how the chemo works another time for anyone who’s interested.

I have never been so understanding about someone’s pubes on a toilet seat before (people going through chemo often lose hair) though do wish they’d read the sign and improvise.  That is, wipe with antiseptic after use. Hard to do when no antiseptic wipes were provided and the sign saying to use them is in the wrong place on the back of the door instead of directly ahead of you as you move towards the loo.  This was my main bug bear of the day and I will feedback gently.  Yet the previous person could have used some soap in loo paper and that would have done the job!

This is turning into a lower bits focus. Felt so good after Chemo, Si and I went down to whoop and holler at our netball team (so hard to not play) and then went out to the pub. Fab people, loads of topics and lots of laughs. We found ourselves sharing our contraception irony…on the trial and when on chemo the last thing the medical team want is for a patient to get pregnant (they’d have to come off the trial, couldn’t get the trial meds wanted, big decisions for patient, birth abnormalities likely). So, even though Si and I have not used contraception since 2007 (!), and have only been pregnant twice very briefly (implant difficulties and a whole other blog needed) we now have to use multiple protection; condoms and a diaphragm with spermicide. Hilarious. Ironic. Oh and the trial team make you sign up to this!

Anyway, the discussion in the pub turned to condoms. The debate was on about who should carry them and when.  The males around the table were a firm “NO”, guys should never carry; condoms should always be available at whoever’s place the couple wanting sex end up. I asked “what about spontaneity?” and suggested both parties should carry two condoms. Then F and W pointed out that condoms have inevitably expired and gone manky by the time they are needed and if they are fresh … you wonder how much sex this person is getting?!

Which type to get also sparked a fever: don’t go for those “real life knobbly ones” was the cry – “they’re awful”. Si confessed to being bamboozled by the array of flavours (I thought you’d be so lucky mate!). I laughed about our different purchasing decisions – I’d come home with ‘reals’ and Si had come home with ‘super safe’. Now, he’d never been boring, so I’d clocked that up to him ‘doing the right thing’. The laughs were finally summed up by W saying “yeah, here’s your blog for today, Janine.  You should call it Janine on Johnnies; and podcast it!”

Psychology, two points:

1. When your energy is good I recommend you take all opportunities to be social; they are good for the soul. You may want to set some boundaries around the social time if you are feeling particularly hyper due to the steroid as I imagine talking quickly, jumping around a lot may be a wee bit draining for friends though highly entertaining! Seriously though, good social support is an immense healer and good friends will get that you are still you and some out of character behaviour is the meds.

2. Find your voice. Doctors and nurses are human too. They are wonderfully knowledgeable and yet they don’t know everything (medicine is an ongoing science after all). They don’t know your body and how you and your body are feeling as well as you do.

It is very, totally and always ok to ask any question and share any concerns with medical staff.  If they seem irritated or rushed, stay calm, be kind (they are working very hard, over very long hours and doing the best they can; they have bad days too). Then gently insist on their help to get questions answered and concerns aired and heard.  Even if they don’t know answers then and there, they may go away and come back with an answer and if they don’t come back, ask the next person. You are the expert in your body and feelings. It is your right to take the best care of your body possible.

If you find it hard to ask, consider asking a wonderfully calm yet confident friend to go with you. Make a list of queries and ask your friend to raise them for you, in front of you so you can hear all answers and ask more if needed. For example, ask if there is an alternative to the drug they have given you, if the drug is in a substance like lactose that you don’t get on with well. There may not be a viable alternative but at least you will know you have done the best thing you could to support yourself or there may be a great alternative and you have just helped your body have one less thing to deal with.

Feel free to ask a nurse why he/she isn’t putting gloves on before he/she puts a cannula in your arm. It’s ok. It’s your arm, your immune system you are trying to help. A good nurse will explain that they may have just washed their hands or go and do it again in front of you or put on the gloves (some nurses wash hands rather than wear gloves before inserting needles so that they have more fingertip control over the needle).

Don’t be afraid to chase up whether a test result is back, ask for copies of all results and make it clear whether you want to know a result now (subject to whether your doctors need you to know). For instance, my Chromosome test was taking ages to come back. I thought it had been lost and I would have to do it again (not fun as this would mean an extra bone marrow biopsy). As the result would not change the first round of treatment (but could have a bearing on prognosis and length of life outcome) I asked staff to make sure the test had come back but not to tell me the result at this stage (unless I needed to know for medical reasons). I did this because I really wanted to sit in ‘everything is going to go really well’ and ‘my first round of treatment is going to be a huge success’. I didn’t want a less than favourable result that I didn’t need to know at this time undermining that thought position. I explained this and the staff understood straight away.

Summary

I recommend you be social when you can (though don’t stay longer than you need if tired) and find your voice with your medical and friendship/family support teams or have a good friend be your voice for you, in front of you.

Ending as I began, talking about ‘lower bits’:

Getting hold of the diaphragm was a whole other saga. My consultant team didn’t know how to get one. The GP had to make a phone call and come back to me. After three hours in the sexual health and family planning clinic, the doc said “we really don’t offer these anymore as there are much more effective and easier forms of contraception”.  I said, “I know, I know but I have had to sign up for this”.  After hunting through the stock cupboard, she produced a diaphragm.  I sighed with relief – at least we can have a sex life now!

Well, thinking about it, sex might be classed as a contact sport, which I’ve been banned from doing!  Stuff that!  I’m not going the whole time of treatment, the better part of this year, without making love to my husband!  Bring on the double barriers!!!

Acknowledgements:

Copy Editor: Stephanie Kemp 

Images: Me & Hubby, FreeImages.com

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

Posted in Chemotherapy for Myeloma, Psychology for Cancer Tagged with: Cancer, Chemotherapy, Condoms, Contraception, Finding Your Voice, Johnnies, Myeloma, Psychology, Sex, Socialising

Before Diagnosis and Special

I’ve always liked to be special but this is taking it a bit far.  4800 people are diagnosed with Myeloma every year in the UK and now I’m one of them.  I didn’t think I’d be saying that.  Well, actually, I did think I’d end up with cancer at some stage; most people do eventually don’t they?  It is in my family…but then I didn’t think I’d get it until much later.  I certainly didn’t think I’d get a cancer that is more unusual than others (15% of blood cancers, 1% of cancers generally) but, hey, I did say I like to be special.

I’ve chosen a cancer (or its chosen me) where usually a person is male, over 70, of African origin and instead I’m female (hurrah!), under 50, and white.  How is that for ironic?  I tell you… be careful what you put out to the Universe because the Universe delivers…maybe asking to be special wasn’t such a great idea!  Seriously though, this is one interesting cancer and I found myself kicking into scientist project manager mode as I ingested as much information as I could get about this new presence in my life.

Friends have asked: how did I find out?  What had I noticed?

Do people ask this because they’re scared they have an illness they don’t yet know about?  Or are people just curious?  Are they nervous about the seeming uncontrollability and randomness of an illness striking?  We never think it will happen to us, or our good friend or our family member but it does.  Illness happens to good people, bad people, people people, every day.  Some illness may be preventable, you know, the usual stuff about stopping smoking, eating well, exercising.  Frankly, if you don’t do those things you really are making it much harder for your body to keep working well for you.  Otherwise, illness just happens and the why is so often still a mystery.

Maybe my getting myeloma is like a metaphor for those of us who are so driven, organised, high achieving, generally healthy, and happy, who always want more, crave growth and development, yet simply cannot control everything. We cannot eliminate uncertainty and must learn to ‘bounce’, flex and sway in the wind if we are to cope with life’s little and ginormous surprises!  For all you control freaks out there (you know who you are and I love you!), I get it, I do.  I like to plan, organise and manage my way to eliminating as much uncertainty in day-to-day life as possible (we even have apps to help make this happen these days) and then demand and embrace the uncertainty, spontaneity and adventure while on holiday.  When it boils down to it though there is only so much we can control and that is OK. Life is meant to be this way; uncertain (spice of life and all that) and we can learn to cope well.

I knew something was wrong.  I’ve known for years.

BUT…I kept doubting what I knew because all the specialists, GPs and test results over the years had reassured me everything was fine.

Except one, a natural killer (NK) cell test that I’d had during IVF treatment (another story).  Even then no one mentioned that the presence of aggressive NK cells might indicate something nasty was going on, something other than my body being unable to let pregnancy cells implant properly.  When I got this result back in 2009 and it was repeated in 2012 (with increased NK aggression levels) I knew something was wrong with my immune system.

I just didn’t know how serious it was.  I also didn’t know what normal feels like, though I strongly suspected that most people didn’t have the trouble getting out of bed that I did, feel frequently achy, need regular Saturday afternoon lie-downs or constantly feel like their adrenals were maxed out.  I often thought of the wonderful, amazingly energetic women in my life who appeared to have energy to be super-mums, triathletes, Tour de France-type cyclists, mountain climbers, sailors. I’d think: their bodies can’t feel like mine does everyday, can they?  Then I’d look at the stress I always injected into my life; taking on jobs that were often bigger than me with steep learning curves each time, doing a masters and a doctorate, striving to work out a minimum three times per week and think, well, I bring on my low energy by my lifestyle choices.

Recently though, having finished the doctorate and chased it with a long break in New Zealand, I started working from home at my own pace on academic and exciting business projects. I had no reason to feel low energy or low mood or slightly and occasionally breathless. But I did feel these things and I didn’t understand why.  I kept thinking, I’m 47-years-old for goodness sake! I shouldn’t feel like this!  I had mentioned I had some slight breathlessness to Mum who insisted I get it checked out. So, when the offer a free NHS Health check for over 45-year-olds came through the post, I booked the appointment immediately and to see the GP on the same day.

In fact, it had also crossed my mind that my symptoms may be to do with becoming peri-menopausal.  I thought, if so, it would probably be prudent to request a test to get a baseline of all my hormone levels so the GP and I could monitor development and make more informed decisions over the next few years.  Sounds all too sensible when I read it back like this but actually, it was the lady in my local health nutrition shop that had suggested this, after I explained my mood had been a bit up and down, I’d been feeling hotter than usual (heat not sexy unfortunately) and my heart had been racing and loud.   This, coupled with a dip in my energy levels and a marked breathlessness during the previous week’s netball game, made me ignore the locum GP’s stress and deep sighing at my list of discussion points.

I asked her to look at all the niggly, singularly minor ailments I’d had over the years and consider them as a whole, please.  I explained I was sick of putting up with the niggles and it didn’t make sense to me to have them; something more fundamental about my immune system must be underlying it all.  To her credit, she looked at the IBS, hypoglycaemia, skin conditions of vitiligo and keratosis, waxing and waning energy and mood levels, unsuccessful IVF, breathlessness and past glandular fever among other things and ordered a set of tests that had not been ordered before.

I couldn’t be more grateful to her.

I couldn’t be more grateful for my Mum and the lady in the health food shop whose name I must find out.

They have extended my life. 

Acknowledgements:

Statistics: Myeloma UK. www.myeloma.org.uk

Illustrations: Sapphire Weerakone, clinical psychologist, baker extraordinaire, artist and master doodler are among some of her many talents!

Editor: Stephanie Kemp, for reviewing my first post and helping me keep tenses under control!

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

Posted in Pre Diagnosis Tagged with: Cancer, Fatigue, Immune, Myeloma, Psychologist, Psychology