56 days slow and bald

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

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

Stairs may as well be Everest

C-diff (Clostridium difficile)

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

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

Hubby Hero

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

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

Our pond with gentle fountain – such a pleasure

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

Hospital, new look for waiting

Waiting and self as benchmark

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

Daily look

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

Channeling Audrey

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

Uncovered

In therapy

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

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

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

Knobbly head

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

Keeping cool

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

Acknowledgements

Images: 

Me & Hubby – headshots

Unsplash:

Yogi Purnama – Superman

Michelle Henderson – Mr and Mrs

Macau Photo Agency – Waiting

Erik Nielsen – SLOW

Martin Jernberg – Everest

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

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

Hedgehogs at a rave

Peripheral neuropathy. A fancy pants way of saying pins and needles. Except it is a bit more than that and the more, is scary. When tingling on the soles of my feet and in my hands turned to prickles and cried out for attention, I had just started my 14th cycle of chemo.  At night, as if hedgehogs at a rave, the prickles began dancing around, keeping me awake. My self congratulation for having coped well so far and immense gratitude to my body now seemed a little premature or at least to have jinxed me.  A strange oscillation between numbness and pain set in. At first, it came and went so I wasn’t too worried. I kept up the once a week, Maintenance Chemo.

Pain

The pain got worse. The tingling turned to a sharp micro needle feeling and the ache crawled up my left arm.  I remember thinking, this isn’t good. I started talking to hubby about wondering whether the benefits of chemo still outweighed the side effects. We decided they did. I kept going.

So, did the sensation and the pain. The cannula insertion became excruciating. The drip of the drug into my forearm was ok but by the end of the treatment the whole arm throbbed; I hadn’t had that before. In the days in between chemo, the pain, numbness and needling rollercoaster, deepened and didn’t let up. I felt increasingly fatigued, distracted and unable to concentrate.  Pain will do that. The symptoms eased a little if I did nothing and stopped using my hands altogether. Have you tried that? It is nigh on impossible! My weekends became slow, sedentary, dull; low mood came a calling.

Peripheral neuropathy doesn’t like hands

Then it hit me; the way I hold a pen had changed.  The length of time I could hold a hairdryer and the way I used a hair brush had changed.  Whenever a cap needed to come off a bottle, I now ask for help. I was using two hands to open doors or press flush buttons on toilets. Cooking had virtually stopped (and I had thought I was being lazy) instead  lifting chopping boards, holding pans, taking roasting dishes out of the oven were difficult. I no longer enjoyed being in the kitchen. No wonder I’d started avoiding it. Hubby rattled off a list of other things I’d stopped doing or was doing differently.

I felt exhausted just thinking about it. Should I stop treatment? Should I keep going? Would I lose the use of my hands if I continued with chemo? What would life be like if I couldn’t use my hands? If the pain was too much? Was I being a wimp? I’m on a clinical trial, I signed the forms, I committed to it; could I simply stop? What would happen to me if I did stop? Would my cancer flare? Was chemo worth it? Was chemo making things worse? How do I decide whether to continue something that may extend my life, when it seems to be significantly reducing, the quality of the life, I have left? My brain; the whizzing and often unhelpful thought production machine, joined the rave.

Holding pattern

I told my oncologists what we had noticed about the difficulty using my hands and how I was questioning whether to stay on the trial; questioning whether more chemo was the best thing for me.  They ran a few tests and determined I had lost strength in my hands, especially my left hand. They recommended I defer chemo for a week.

That week came and went with no improvement.  I went into a holding pattern for another week. Peripheral neuropathy is the pits and as well as dancing needles it feels like being burnt, a searing. The pain was constant, in my shoulder, my forearm and using my hands made everything worse. More MRIs were ordered. I started to worry about new lesions. Was it peripheral neuropathy? Would it get worse? Was it something else?

Deal or no deal

It came down to one week and the limit of missed weeks allowed when on the trial. I had happily missed a few weeks of treatment to be with Mum during part of her radiotherapy and then missed additional weeks while we waited to see if the pain and hand function would improve. We now had to decide, the medical team, hubby and I, the best next step for the one remaining week; chemo or no chemo. Sounds like deal or no deal except there was no money involved, no windfall or good luck, instead hope or no hope. Bones versus hands.

Hands won. Living rather than life, won. This time.  Drs L and A recommended I stop chemo; they didn’t want my hands to get worse and so I was kicked off the trial.

After 21 months, 17 cycles of chemo, virtually weekly blood withdrawal, 100 odd cannula insertions…it was time to give the body a break.

Care as Usual

I went off the trial and on to ‘care as usual’. What I didn’t factor in, was that meant I would no longer be looked after by the trial team, the team that had had my back from the beginning, the team I had come to know, feel safe with, could express my fears and questions to and laugh with. I would be losing the team that had been with me since March 2017 when I first stepped into the Chemo Day Unit and steeled myself for the uncertainty of cancer treatment. Sigh.

Then of course there were the dominos. The other life challenges, falling thick and fast. Not sure what I mean? See my last post, Silent Dominos.

So while still dealing with Mum’s recovery and ‘what next’ (she’s amazing by the way) and my peripheral neuropathy and hand malfunction… along came the next three dominos:

• Changing treatment, care team and feeling cast out into a new uncertain hospital process
• Dad’s Melanoma came back
• My cancer got worse

Who on earth had it in for my family?  Who had we unintentionally, unwittingly, annoyed?

All of us with cancer. At the same time.

We didn’t deserve this. No one does.  I needed to remind myself:

Cancer doesn’t care who you are or what you have or haven’t done.  It’s simply not that choosy.

Posted in Cancer in my family, Chemotherapy for Myeloma, Myeloma Treatment, Pain, peripheral neuropathy, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, feet, hands, Myeloma, peripheral neuropathy, pins and needles, Side effects, Treatment

Silent Dominos

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

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

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

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

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

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

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

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

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

The first set;

1. My hands stopped working.

2. Mum got cancer.

3. An internet troll joined my party.

I’m not silent anymore.

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

Hot to Trot. NOT.  It’s Menopause.  Men, this is for you too.

A fire has started at the bottom of my ribs.  It caught hold in an instant.  Creeping upwards, slowly at first but I know what’s coming…it’s picking up pace…then whoosh; my chest, head, face and whole body is washed with heat.  Fever type heat, taking over the lymph nodes, my forehead, my entire skin.  All my sweat glands are working overtime and can’t compete, they give up.  It’s a hot flush or flash and boy is it flashy.  It makes its presence known.

Now, I’m hot and wet.  Nup.  Not that kind.  The kind where you feel grubby, like you need a shower and a change of clothes.  The night sweats are the worst (well for heat), waking up absolutely drenched, the bed linen soaked and feeling too hot to sleep (if I had any in the first place) …and knowing it will happen again in 10 minutes or an hour (if I’m lucky).

The worst is when you get up, feel good, have a shower, do your makeup, still feel good and then while you are finishing off drying your hair or just as you leave the house or need to head for a train…. whoosh it happens again…. that good feeling a distance memory when frustration, feeling stinky and in need of a second shower takes over.  Decisions; go out sweaty or be late and have another shower.  Lovely.  Stinky wins most of the time.  I hate being late.  I feel like a woman of the Victorian age as I spray myself with perfume to cover up the body odour.

Mid-life crisis or Climacteric or ?

Speaking of ages and eras, I googled menopause and synonyms came up; maturity, mid-life crisis, climacteric, grand climacteric (no less), matureness, post maturity.  Mid-life crisis – what an unhelpful way to talk about menopause.  Though finally and slowly, Menopause is being talked about (mind you, we could do with a royal to take up the band wagon and bring it into the bright light).  Climacteric is an interesting one, apart from referring to Menopause in medical circles it also denotes a critical period or event and having extreme and far-reaching implications or results.  I got a shock when I discovered what some of these far-reaching implications were. Men, this is just one of the places where you come in!

Shock

In the week when I decided to research Menopause and Cancer the universe must have been aligning; three different sources of Menopause information happened into my path.  The first one; I turned on the radio and heard the presenter say a piece on Menopause was coming up.  Perfect timing.

Menopause; a completely natural process involving women’s bodies producing less oestrogen and changing progesterone hormone levels.  I’ll come back to the implications of these in part two of this blog.  For now, let me tell you about something I heard on the radio that shocked me.  The host talked of how she had discovered some high flying, dynamic women at the top of their career had left their jobs due to the difficulty they had experienced in managing the symptoms of menopause.

Shocked doesn’t really explain it.  In this day and age?  I didn’t doubt that the symptoms must have been horrendous; I was stunned that women were not being adequately supported by medicine or natural means to enable a normal physiological transition to be facilitated so that their lives and work were not impacted in such a significant way.  The feminist in me wondered if men would have put up with this state of affairs though to be reasonable, menopause appears to be a learning curve for many of us.  Consequently, I was shocked.

I was even more shocked when men joined the discussion and explained their relationships had broken down, divorce had resulted and they described their many regrets about not having understood what the women in their lives were going through during menopause.

Job loss, love loss.  OMG. Menopause, you can be incredibly cruel and we need to talk about you, a whole lot more.  Now!

Symptoms and Years

In my humble opinion, Menopause symptoms are sh*t:  mood swings, hot flushes, night sweats, brain fog, short term memory loss, difficulty in finding words and string sentences together, fatigue, low libido and vaginal dryness.  They often start when women are in their 40s and 50s though can start when women are much younger.

Symptoms often last YEARS.  Men, please note this.  YEARS not weeks or months.  Most women (8 out 10¹) face life impacting menopause symptoms for between 3 and 7 years and for some women, the rest of their lives.  On top of this, perimenopause (the few years before menopause starts) usually brings unhelpful, generally unwanted symptoms too including disrupted sleep, headaches and heavy periods.

Ok, not all women experience these symptoms so we must be careful of making assumptions however MOST women do find themselves having to go through yet another massive learning curve about their body. And guys, it would be great if you came along for the educational ride.  Not least because men go through a ‘pause’ of sorts too!

For men, it’s called andropause and refers to age-related changes in male hormone levels.  Male menopause (not necessarily a helpful term) involves a drop in testosterone production in men who are age 50 or older. It’s often affiliated with hypogonadism. Both conditions involve lowered testosterone levels and similar symptoms.

You’re getting on my wick…

Ha.  So we DO have an excuse for being irritable and bitchy.  Sort of…well, not really…because it’s not that helpful, is it?  Usually most of us just feel worse when we let irritation get the better of us and say or do something we wish we hadn’t said or done.  However, when we know hormones may be playing a big part in our mood we can use our awareness to catch ourselves in our irritation and then choose our words and actions carefully, with more sensitivity.  Not always easy but likely to result in a better day.  It’s also OK to acknowledge we are feeling easily irritated!!

The more we talk about menopause, the more men and women will be able to identify when peri-menopause and menopause start.  We can then learn about the options for managing the unhelpful symptoms.  Finally, both men and women can then practice and take responsibility for being supportive, tolerant and understanding of each other and ourselves as we go through these changes.  Maybe then, we’ll be able to avoid mountains from molehills and the extremes; relationship challenges and break down, negative outcomes for career and lifestyle.

Now imagine dealing with all of this…and cancer…and chemo.

Except, there’s more.

Identity

I wish it was just the symptoms listed above and the frequent embarrassment that accompanies them, that many women were dealing with.  Going through the menopause can play havoc with women’s sense of identity, sexiness, and value in the world.  Western society still predominantly relates to the menopause phase as women becoming old and somewhat invisible rather than being mature, loving and fully living life.

Edna M. Astbury-Ward summed it up well in her 2003 paper

The social construction of menopause as the entry point to old age may represent a challenging and difficult time, because while women may feel young, society tends to perceive them as rather less attractive and less fully functioning. This perception of menopause as a negative milestone is often found only in Western cultures. Medical culture also influences the meanings of middle and old age, particularly for women at the time of approaching menopause.

Cultural bias against ageing and sexuality has contributed to that stereotyping of older women as asexual. In general, the media has not served the ageing female well. Older men are often marketed as sexy, yet older women are rarely seen outside of advertisements for hormone replacement therapy (HRT) and Conti knickers.²

I suspect we need a new, positive and helpful narrative for the completely natural yet often difficult to go through transition that is menopause. The recent menopause cafe phenomenon may be helping with this as a space is provided to discuss menopause and challenge stereotypes.³  Princess Anne, Duchess of Cambridge, Kate; Duchess of Sussex, Meghan – you don’t fancy taking up the band wagon, do you?

Chemo vs Menopause

This was the backdrop to my realisation that chemotherapy and menopause symptoms are eerily very similar.  I had been struggling to manage some of the chemo symptoms, particularly the lack of good quality sleep yet they may not have been chemo side effects at all (or at least not current side effects).

My next challenge along this cancer journey was now starkly obvious; to work out how best to support myself over the next year of treatment or to review treatment options, I needed to discern what was a chemo symptom and what was a menopause symptom and then learn how to address each in the best way for me.  In the back of my mind it also occurred to me that I may end up going through this whole process twice so getting a handle on it was crucial to enjoying my life and living it to the full.  Twice, because my menopause was possibly chemotherapy induced and not following its natural path.  I was yet to find out if there was a chance my symptoms would stop then start again once chemotherapy was complete (joy of joys).

There it was, a whirlpool of thoughts swirling around, when in the space of a few days, I turned on the radio at the right time, walked into a foetal medicine building to use the loo only to discover a medical exhibition on menopause and noticed a webinar series advertised on social media involving a week of interviews where experts in menopause shared their pearls of wisdom.

Timing and attention; thank you, Universe.

Part two coming up -– the nuggets from the Menopause experts and my oncologists’ stand-off!

I am going to take a breather now… oh, and another shower.

References

¹ https://www.nhs.uk/conditions/menopause/symptoms/

² Astbury-Ward, E. (2003) ‘Menopause, sexuality and culture: Is there a universal experience? Sexual and Relationship Therapy’. Journal of the British Association for Sexual and Relationship Therapy. 18(4), 437-445

³ https://www.theguardian.com/society/menopause – Menopause café and challenging stereotypes about aging.

Acknowledgements

Images: Unsplash:

Steam_skyler-king-527288;

Shock_andre-guerra-676198;

Divorce_rawpixel-666933;

Sleep_vladislav-muslakov-261627

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

Posted in Menopause, Myeloma Treatment, Symptoms and Side Effects Tagged with: Cancer, Chemotherapy, Menopause, Myeloma, Side effects, Treatment

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

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