Category: Symptoms and Side Effects

Silence
April 5th, 2019 by Janine

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.

dominos marco lermer 1406710 unsplash 300x200 - Silent Dominos

Posted in Cancer in my family, Psychology for Cancer, Symptoms and Side Effects, Uncategorized Tagged with: , , , , , ,

Icecreams
August 13th, 2018 by Janine

The Tor and sheep’s poo

The stone of the Glastonbury Tor holds the sun’s warmth and shares it with my back.  I duck out of the wind, soak in the fabulous views of the Salisbury plains and reflect on the last year and half since diagnosis with Myeloma.  Deep breaths of fresh air (fused with sheep poo aroma) fill my lungs. I’m sure the menopause (Meno) conundrum has been one of the most challenging and inspiring learning elements of this cancer journey.  Are you ready for part three (and final for now) of the Menopause blogs? Let’s talk ‘alternative’ (read non-medical) Meno symptom management solutions and finally, my decision about what, if anything, to take.  It’s probably apt that I am writing this in a place full of people living ‘alternative’ lifestyles or certainly appearing to be very happily in their own world…

 

The Tor at Glastonbury

The Tor, Glastonbury

Sheep

Sheep

Previous posts about Menopause

If you are happening upon this blog and interested in Menopause and Menopause and Cancer please see my previous posts on Menopause (part 1 and 2, links under Recent posts on the righthand side of this page).  Now, let’s crack on with the next instalment, part 3, the alternatives to HRT. A rhyme? Unintentional!  Any poets out there? Maybe it’s time for Meno poetry.  I hear Menopause, The Musical and the comedians (Victoria Wood (rest in peace), Sandra TsingKathy BurkeAngela Verges, and Jeff Allen have and are doing a fine job); room for another genre? Hey, if it gets all of us talking Meno, I’m keen. All poetic contributions welcome!!!

 

Menopause, The Musical

Menopause, The Musical

 

Menopause (Meno) part three (my final Menopause focussed post for now)

Wee recap; my MMmM project (Multiple Myeloma and managing Menopause symptoms) began by exploring the traditional medical models, asking my oncology team and gynaecologists for advice.  I then turned to a wide range of menopause experts by experience and occupation for complementary, natural and alternatives to Hormone Replacement Therapy (HRT).  I found myself falling into the world of Isoflavones, phytoestrogens, red clover black cohosh and more.  Here is what I discovered…

 

Alternatives to HRT

Actually before we get it into alternatives, let’s be clear, one completely valid option is to take nothing and embrace the menopause process as a natural part of aging; to cope with whatever symptoms are experienced.  However, for many of us, in the same way that managing difficult periods, pre-menstrual syndrome (PMS) or tension (PMT), difficult pregnancy, endometriosis, polycystic ovaries, fibroids and other gynaecological processes and concerns, it is either unnecessary to put up with unwanted symptoms or they are simply intolerable.  Additional support is needed.

Below are some of the alternatives to HRT and practical solutions I encountered and many of which I have tried.  Please note most complementary and alternative treatment options do not yet have robust evidence of effectiveness; though some women will experience benefit from some of these treatments.1

 

Isoflavones and Phytoestrogen

 

The definitions and characteristics (interesting nutrition and hormone stuff);

Isoflavones are crystalline compounds whose derivatives occur in many plants (especially pulses), often as glycosides.  Phytoestrogens refer to a substance found in certain plants which can produce effects like that of the hormone oestrogen when ingested into the body.2

Isoflavones are oestrogenically potent phytoestrogens.  The main dietary isoflavones, called genistein and daidzein, are mostly found in legumes such as soy, chick peas, lentils and beans.  Lignans and prenylated flavonoids (also phytoestrogens) have potent oestrogenic activity but there are few studies about them. 2

 

Evidence is mixed about Soy

A recent study found a reduction in hot flushes when women used soy germ extract with 100mg of isoflavone glycosides.3  It is not clear from studies to date, whether frequent soy consumption explains the lower rate of hot flushes among different ethnic groups.

 

Red clover and Promensil

Red clover, another source of isoflavones, contains compounds that are metabolised to genistein and daidzein after consumption. The most studied red clover product is Promensil. 4

 

Promensil double strength

Promensil

 

  • A ‘natural’, non-medical, easily accessible, alternative to HRT
  • Growing evidence base that it works in improving unwanted Menopause symptoms
  • A three-month dosage duration is recommended initially
  • Not enough evidence yet looking at long term effects
  • Just like HRT, it is unlikely to work for everyone

 

Promensil and hot flushes

Managing women with phytoestrogens

Managing women with phytoestrogens

The evidence

There are few studies exploring Promensil and Isoflavones for the management of Menopause symptoms and other health benefits though fortunately the evidence base is slowly growing.

A recent review highlighted evidence supporting use of Promensil at 80 mg/day for treating hot flushes in menopausal women.  This finding was consistent across 3 studies included in the meta-analysis. Promensil was found to be safe over the short-term duration of the studies (3 months).5

A more comprehensive review with a rather unfortunate name ‘Managing women with phytoestrogens’ also reviewed the studies mentioned above. (It makes me angry when its implied or explicitly stated women need managing!!)  Setting this name issue aside, the researchers proposed that one of the most widely researched food supplements has been the phytoestrogenic preparation containing red clover isoflavones. Six randomised trials exploring the impact on vasomotor symptoms (night sweats, hot flashes, and flushes) were included, three of which displayed a significant benefit compared to placebo.6

Data from small randomised and observational trials showed benefits of using red clover isoflavones for osteoporosis and cardiovascular disease. Red clover isoflavones may also derive psychological benefits. Safety data is positive so far.  The reviewers conclude with further studies would be welcome, particularly in women with significant medical risks.6

A 2018 paper describes a study of 50 patients where a combination of 40mg dose of Isoflavone along with calcium, vitamin D and inulin improved vasomotor disturbances as well as quality of life and sexual function in menopausal women.  This was a small trial with a number of limitations so the results while promising, need further investigation.7

 

From the makers of Promensil (Check out their website and research claims)

Here are two sheets summarising clinical support for red clover Isoflavones relating to a range of health domains.

Clinical Support for Red Clover Isoflavones

Clinical Support for Red Clover Part1

Clinical Support for Red Clover Isoflavones Part2

Clinical Support for Red Clover Part2

They also explain the difference between Promensil and other red clover products including soy isofalvones.  Check it out here.

 

The controversy

There had to be some debate, right?  This is Menopause we’re talking about after all!  Studies involving Promensil were reviewed, analysed and reported in a 2014 Cochrane review paper. 4  Only five trials met the search criteria and the authors argue that,

No conclusive evidence shows that phytoestrogen supplements effectively reduce the frequency or severity of hot flushes and night sweats in perimenopausal or postmenopausal women.

On a positive note the same review highlights the possibility of a positive outcome from genistein and concludes

…benefits derived from concentrates of genistein should be further investigated.

Read the full paper here.

 

Other ‘Alternatives’, Complimentary Medicine and Lifestyle choices for managing Meno symptoms

Beyond the better known isoflavones, I came across a number of other recommendations for using supplements, making lifestyle changes and employing complimentary medicine for reducing unwanted Menopause symptoms and side effects.  I then went hunting for scientific evidence of each product’s effectiveness and began trying a few things out.  Here is a list of the alternatives I looked into:

  • Probiotics
  • Vitamins (A, C, D, E, K, Zinc)
  • Omega 3
  • Black Cohosh
  • Acupuncture
  • Chill Pillows (a new take on chill pill!).
  • Exercise
  • Chinese Medicine
  • Cognitive Behavioural Therapy
  • Non-hormonal pharmaceutical treatments

Some women have found benefits from natural remedies BUT the research is mixed and caution is advised.  Check out these summaries; 1,8,9

Complimentary alternative therapies.

Natural remedies for hot flushes  

A paper Mallhi et al with a long list of alternatives, dosage and known side effects.

Here are my discoveries in more detail; I hope they prove useful…

 

 

Udos Super8 Probiotic
Probiotics and Vitamins

Now for a confession, I can’t remember exactly who told me to take probiotics and a full range of vitamin B’s, Calcium and Vitamin A, C,  D and Zinc to help with menopausal symptoms (blame it on Chemo and Menopause memory impact!).  I am 99% sure, I first heard this from my Nutrition therapist, then from the amazing lady who runs our local health shop and then finally I’m sure it came up in the interviews facilitated by Katie Phillips with Menopause experts that I have mentioned in my previous posts (See links below for some of the interviews and more about Katie).  I take VitD, VitB and Calcium daily as part of my Cancer treatment as advised by my medical team so it has not been a hardship to add the probiotic.

Muhleisen’s paper highlights probiotics for reinstating vaginal equilibrium in menopause 10 and Britton’s paper advocates probiotics to prevent vaginal dryness and atrophy.11 Count me in!

 

Omega 3

According to a recent review, Omega-3 supplements may alleviate night sweats but not hot flushes.12

 

Vitamin C, D, E – more mixed results

A 2013 paper highlighted that Vitamin C and E reduce the intensity and number of hot flashes via promotion of adrenal function though it is very important that the correct dosage is used and no large doses are taken.13

In contrast, LeBlanc’s 2015 paper and 2010 studies (by Dennehy et al and Lerchbaum et al ) show there is no evidence that vitamin D or E helps vasomotor symptoms but do recommend vitamin C, D, K and calcium for maintaining bone health.14,15,16

 

Zinc and Vitamin K

Zinc and Vitamin K are positively associated with bone mass however I couldn’t find any evidence for either reducing unwanted menopause symptoms.17,18, 19

 

For healthy hair during menopause – vitamin Bs, C, Proteins and Fats

Sugar craving during Menopause – check your Vitamin C levels

Consider going VEGAN or simply eat more plants! 

One study showed that vegans reported less bothersome vasomotor symptoms than omnivores.20

 

Vitamin A

I couldn’t find any relevant studies regarding Vitamin A and menopause and menopause symptoms.  Please let me know if you can!

 

Black Cohosh

While an older 2010 study found black cohosh reduced hot flushes21 a recent, more comprehensive Cochrane review concluded there is insufficient evidence to either support or oppose the use of black cohosh for menopausal symptoms.22

 

Chinese Medicine, Dong Quai, Ginseng 

Another 2016 Cochrane review found insufficient evidence that Chinese herbal medicines were any more or less effective than placebo or HRT for the relief of night sweats and hot flushes.23

 

Non-hormonal pharmaceutical treatments (e.g. SSRIs often referred to as anti-depressants)

A 2010 review of studies found Clonidine, SSRIs and SNRIs, gabapentin and relaxation therapy showed a mild to moderate effect on reducing hot flushes in women with a history of breast cancer.24

 

fullsizeoutput 1490 225x300 - Isoflavones. Icecreams? No, for Menopause. What?

Chillmax pillow

Chillmax pillow

A Chillmax Pillow

This is a wonderful, wonderful recommendation (thank you Sis-in-law and Mum-in-law!!)  Slip it under your pillow case or lie it vertically down your pillow to provide your head and neck with a cool sensation.  Ahhh, bliss.

 

Acupuncture

Acupuncture may be beneficial in comparison to not taking anything though the evidence is weak at the moment.25

 

Regular exercise

Ha. We can never escape this one it seems.   While exercise isn’t directly linked to vasomotor symptoms of menopause including hot flushes it is recommended to support the related impact of Menopause changes and symptoms.  Check out these articles – A good time to exercise and Meno and constipation.26

 

Cognitive Behavioural Therapy (CBT)

There is growing evidence that CBT can help reduce the impact of Menopause symptoms.27  The British Menopause Society have released a helpful leaflet that has been endorsed by the UK National Institute of Clinical Excellence (NICE).28

 

Alternatives to HRT and Cancer

A 2013 systematic review of soy and red clover as used by breast cancer patients or those at risk of breast cancer, found a lack of evidence showing harm from use of soy with respect to risk of breast cancer or recurrence. Soy intake in line with a traditional Japanese diet (2-3 servings daily, containing 25-50mg isoflavones) may be protective against breast cancer and recurrence. Soy does not increase circulating estradiol or affect estrogen-responsive target tissues. Prospective data of soy use in women taking tamoxifen does not indicate increased risk of breast cancer recurrence. Evidence on red clover is limited though existing studies propose that it may not possess breast cancer-promoting effects.29

A 2015 study proposed a combination of Soy and probiotics may have potential for reducing the risk of breast cancer.30

Another three-year study concluded that when compared to HRT, Promensil was safer as there was no effect on known breast cancer risk factor.31

New shoot amongst the dryness

New shoot amongst the dryness

 

Menopause, Sex and Vaginal Dryness

Let’s talk about sex baby, let’s talk about….sex.  Remember that track by Salt n Pepa? Except I’m talking about sex during Menopause.  Many women find sex painful due to vaginal dryness or don’t fancy sex at all as Meno creeps up on them.  Women – you do not have to put up with this state of affairs.  For dryness, there are medical issued and organic/natural products that can make a real difference.  Consider trying out Yes (mostly organic) or Sylk products. Here is a link to an article 32 which includes a comparison between multiple product options.  How Important is vaginal lubricant and moisturiser composition? If you are concerned that your vaginal dryness might be severe and not easily solved by a moisturising lubricant you may be interested in this presentation on Vulvovaginal Atrophy (VVA).  It has some great info on the moisturising lubricants too.33

 

Twice Two cups

Twice

Will I go through Meno twice?

One thing the gynaecologist did say is that I am very unlikely to have to go through Menopause twice; that is, it shouldn’t reverse once my chemo stops and start again at a later stage.  That seems like a kind gift from the Universe.  I’ll hang on to that.

Of course, I will still be part way through my own Meno journey, living with the uncertainty of not knowing whether mine will finish after 3 years, 7 years or be considerably longer lasting.  Hey, so long as the symptoms are managed and I continue to feel myself, I am happy and willing to embrace this new, wondrous, challenging and clever process, my body goes through.  Hopefully too, in a few months’ time, after being on my chosen treatment and monitoring symptoms, I will be much clearer about what is a Chemo or Cancer induced symptom versus a Menopause symptom.  Meno and hormones may no longer be a fall-back excuse for my ‘well aren’t I moody today’ moments!

So now to my decision:

For me, taking nothing is not an option at this stage as maintaining an even mood, improved libido and reducing hot flushes are a must.  Do I try Promensil and or trust in the gynaecologist who was adamant HRT was the way to go? I wonder what is holding me back.  I think it is my oncologist with the anti-HRT opinion that is still bothering me; I need to have another talk with him.

 

My Decision(s) and a U-turn

Talking and researching must stop at some stage and a decision be made.  Continued talking and researching can make decisions much harder to make; there will always be contrasting views and experiences.  A stake in the ground, a baseline, is needed.  I must make the decision that is right for me with the information I have today.  After all, I know any decision is not set in stone, I can change it later, if new information comes my way, or my body doesn’t like the solution I try or the decision stops feeling right to me.

So, what’s it to be?

I’m going to start natural plant based bioidentical HRT gel and progesterone tablets.

Except I’m not.  Deep Breath.

Just when I had decided to start natural plant based bioidentical HRT (I had even submitted the prescription) my Mum, my very precious, kind Mum, was diagnosed with breast cancer.  Deep breath.  I won’t talk about this now, other than to say, the all important public health system has once again appeared to have caught the little nasty early; thank you health teams, thank you Universe.

Now, with breast cancer in my family, my chances of getting secondary cancer (and breast cancer) seemed to have leapt from a statistic to a reality.  Another deep breath.  Talk to self; be sensible.  I let my med team know and asked for a mammogram and a chat with the breast cancer team.  My oncologist referred me immediately.

I had based my ‘go with HRT’ decision on two factors in the end: a) The delivery mechanism for the estrogen component is via gel and does not go directly through my liver and, b) the research investigating HRT side effects and long term effects is present and more robust than Promensil, at this stage.  Although now…

 

Out with HRT and in with Promensil

The HRT rational above was discarded considering the increased risk of secondary cancer and my recent family diagnosis.  Promensil now seemed much more appealing.  Despite the lack of larger and longitudinal studies, I decided Promensil was work the risk.  I needed help and I was being monitored extensively each week; if a negative impact occurred, I figured it would be picked up quickly and I could stop Promensil immediately.

Two other things helped me embrace this decision; it felt right as soon as I had made it (a better feeling than I ever had with HRT) and it fitted with the additional chat I had with my oncologist.  He knows me best, is a clinical lead and has spent most time with me over the last 15 months.  He has my best interests at heart and has always coped with my endless queries and requests for repeated explanations.  While I do trust the others in the haemo-oncology team, I gave weight to his opinion and his caution over adding this long-term medication into the mix. He said he felt HRT would add extra risk, risk that wasn’t able to have a statistic put on it due to my individual circumstances and the few studies exploring HRT and Myeloma relapse.

Finally, I am reminded that while I usually place my store in scientific evidence, just because something hasn’t been rigorously studied yet, doesn’t mean it won’t later be discovered to be beneficial.  Cannabis oil for chronic illness/pain and ketamine for some mental health disorders spring to mind, as substances we might have first thought of as harmful yet in certain doses and conditions, have been found to have positive outcomes.  Mindfulness didn’t start out with an evidence base, yet now, it is well established as having beneficial outcomes in many circumstances.

Therefore, I have taken the risk (whatever that is) of introducing yet another supplement/medication into my life.

 

Promensil 80mg Red Clover Isoflavones

Promensil 80mg Red Clover Isoflavones

Promensil = Improvement (my case study so far)

I started Promensil while conducting this research and then stopped when I thought I’d better gather the evidence first and make a more informed decision.  I was a bit reluctant to stop as I hadn’t noticed any adverse effects and there had seemed to be an improvement in Meno symptoms.  When I stopped, the night-sweats returned with a vengeance.

Promensil is shaping up to be a wonder product for me.  Although I am open to the possibility it is a placebo effect.  Now back on it, I have taken one pill, once per day, for six weeks (the double strength version).  Much to my delight the full body night-sweats with drenched bed linen and night clothes are no longer!!  I don’t remember having one in the last fortnight at all!  Plus, a lovely UK heat wave have meant nights have been hot (in the mid-20s Celsius/77 Fahrenheit at times).  The improvement timing couldn’t have been better, otherwise I think I would set the bed and house on fire or internally combusted!

 

Hot flashes

My daily hot flashes now tend to occur in the afternoon, rather than all through the afternoon and evening, are less severe and less frequent; down to 2 per day though I haven’t monitored closely. I do know I’m not stripping off clothes and putting them back on minutes later any near as often, not even every night.

For the last ten days, I have switched to taking Promensil around lunch time or a little later, as most hot flushes appeared in the afternoons or evenings, when they did occur.  I have discovered this has had a positive benefit too; flushes have reduced again and while I have not been taking a log, it seems I am only getting one flush a day now.

 

Other symptoms

The jury is out on other symptoms.  I seem to sleep slightly better, deeper while asleep though I still wake often.  I need to monitor the Meno symptoms closely at the end of each week and during my non-chemo week, to determine any changes; the chemo and steroids at the beginning of the week are likely to interfere with sleep (negatively) and energy (positively).  In the middle two weeks of the six on Promensil, I thought my mood had been slightly more even, though I need to check with Hubby on this; suspect he may disagree!

Over the last two weeks with so much going on, health, family and otherwise, I have exercised and meditated less, my mind has been very occupied and I think my mood has fluctuated a lot.  Feels like the Promensil was unlikely to have any positive impact on that symptom!  Though, who knows maybe my mood would have been worse, if I hadn’t taken it.  No science here, no objectivity, remember these are just observations, interpretations and surmising.  Though, I am the expert in my own body and mind so I’m rolling with a ‘Promensil is working’ concept for now.

On a couple of occasions, I’ve noticed if I drink a hot drink quickly or have a moment of frustration or stress, a hot flush followed very quickly.  I’ll keep an eye on this and try to notice if it always happens or appears random rather than linked to hot drinks and stress.  Though I believe this is not uncommon.  Check out these known triggers for hot flushes.

 

Menopause was hard to write about

I have found Menopause hard to write about. Maybe I hesitated because I wasn’t sure whether I was going through it or not: the symptoms are so like those that accompany cancer and chemo.  No, that wasn’t it really, I was embarrassed, at first.  Outside of my very close friends and eventually, close clinicians, I have found it one of the hardest subjects to raise.  I’m not sure why.  Especially when, I am a psychologist who believes in taking the unhelpful stigma out of, well, EVERYTHING.

Menopause has been more difficult to disclose than cancer: WEIRD. Talking about menopause with and due to cancer and chemo: DOUBLE WEIRD.  This combo takes Meno, ‘to another level’ (the catch phrase of 2017-18, I’m sure).    Talking about some aspects of Menopause have been harder than others; vaginal dryness for instance.  For some reason, I found this really hard to write/talk about.  Worried I’d be judged maybe?  Worried people would assume I was experiencing vaginal dryness and for some reason not wanting people to assume that everything I write about, happens to me?  Strange, given mostly it does, and the blog is of a personal nature.  But that’s the point isn’t it.  Get talking.  Reduce stigma.  There is nothing to be embarrassed or awkward about.  These processes are natural, they do not need to be hidden, talked about in secret or god forbid, suffered in silence.

I think underneath it all, I believe my and many European societies or so called developed countries with an individualistic tendency, associate women, during and post menopausal as old, unsexy, and past it.  I know that simply isn’t true.  Sophia Loren, Helen Mirren, my Mum, spring to mind – all sexy, awesome women, regardless of age.  Yet I worried and continue to worry about feeling and being: old, unsexy and past it, particularly when my skin gets thin and wrinkly from steroids and chemo, my grey hair becomes more abundant and my energy or libido feel low.  I worry when I stop feeling like myself.

All is not lost; applying psychology skills, and finding psychological flexibility, I constantly and consistently challenge these thoughts and feelings.  Though some days it is hard to do. I remind myself of a new more helpful perspective.  I take time to reflect, recognise and acknowledge that I haven’t felt old or unsexy every day or every moment of the day.  In fact, I have and do feel mighty fine, a lot of the time (another rhyme?).  Not bad for a woman fast approaching 50.

 

Menopause communities…have you found yours?

Thank goodness for the new wave of open discussion about Menopause and growing social communities like the Menopause Café movement.  It’s about time.  Here are two Meno stories and an episode of Loose Women about Meno.  You may also want to check out the magazine Menopause Matters.  I’m very grateful for Katie Phillips, her wonderful interviewees, the menopause café team, the celebs who have shared their stories (Kim Cattrall, Zoe Ball, Meg Matthews, Lorraine Kelly to name a few (see their and others’ stories here)  and the ordinary (spectacular) women in my life who have disclosed their menopause journeys to me.  Thanks for helping me get over my embarrassment by reminding me; I am not alone and that my Meno related decisions will be the right ones for me.

I have a lot of time for the author Christine Northrup with her interest and application of both her  medical and holistic complimentary health expertise.  Here is one of her books that you might find particularly useful.

Christine Northrup The Wisdom of Menopause

The Wisdom of Menopause

 

Your feedback

Please do share the link to this blog, ask any questions you may have and do let me know:

  • What has been the hardest part of your menopause or menopause with cancer journey?
  • What has been the hardest part of caring for someone going through menopause or menopause and cancer?
  • What have you discovered?
  • Your Meno poem
Feedback Boy with Microphone

Feedback

Resources, References, Study papers and more:

Menopause, The Musical

https://www.ents24.com/uk/tour-dates/menopause-the-musical-touring

Communities: The Menopause Cafe

https://www.menopausecafe.net/

English Oxford Living Dictionary (August, 2018). 

Definition of isoflavones. https://en.oxforddictionaries.com/definition/isoflavone

Definition of phytoestrogen.  https://en.oxforddictionaries.com/definition/phytoestrogen

Alternatives to HRT

Complimentary alternative therapies

https://www.womens-health-concern.org/help-and-advice/factsheets/complementaryalternative-therapies-menopausal-women/

Natural remedies for hot flashes – black cohosh, ginseng and more

https://www.menopause.org/for-women/menopauseflashes/menopause-symptoms-and-treatments/natural-remedies-for-hot-flashes

Mallhi, T. H., Khan, Y. H., Khan, A. H., Mahmood, Q., Khalid, S. H., & Saleem, M. (2018). Managing Hot Flushes in Menopausal Women: A Review. Journal of the College of Physicians and Surgeons–Pakistan: JCPSP28(6), 460-465.

https://www.jcpsp.pk/archive/2018/Jun2018/jcpsp-vol28-no6.pdf#page=48

Soy germ and isoflavones

Imhof, M., Gocan, A., Imhof, M., & Schmidt, M. (2018). Soy germ extract alleviates menopausal hot flushes: placebo-controlled double-blind trial. European journal of clinical nutrition, 1.

https://www.nature.com/articles/s41430-018-0173-3

 

Support for Promensil

Promensil website

https://promensil.co.uk/

Myers, S. P., & Vigar, V. (2017). Effects of a standardised extract of Trifolium pratense (Promensil) at a dosage of 80 mg in the treatment of menopausal hot flushes: A systematic review and meta-analysis. Phytomedicine24, 141-147.

Panay, N. (2011). Taking an integrated approach: managing women with phytoestrogens. Climacteric14(sup2), 2-7.

Controversy & Genistein

Lethaby  A, Marjoribanks  J, Kronenberg  F, Roberts  H, Eden  J, Brown  J. Phytoestrogens for menopausal vasomotor symptoms. Cochrane Database of Systematic Reviews 2013, Issue 12. Art. No.: CD001395. DOI: 10.1002/14651858.CD001395.pub4.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001395.pub4/full

Vitamins, Black Cohosh and more

Vitamins in combination with Isoflavones –

Vitale, S. G., Caruso, S., Rapisarda, A. M. C., Cianci, S., & Cianci, A. (2018). Isoflavones, calcium, vitamin D and inulin improve quality of life, sexual function, body composition and metabolic parameters in menopausal women: result from a prospective, randomized, placebo-controlled, parallel-group study. Przeglad menopauzalny= Menopause review17(1), 32.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5925192/

Probiotics

10 Muhleisen, A. L., & Herbst-Kralovetz, M. M. (2016). Menopause and the vaginal microbiome. Maturitas91, 42-50.

https://www.sciencedirect.com/science/article/pii/S0378512216301244

11 Britton, R. A., Irwin, R., Quach, D., Schaefer, L., Zhang, J., Lee, T., … & McCabe, L. R. (2014). Probiotic L. reuteri treatment prevents bone loss in a menopausal ovariectomized mouse model. Journal of cellular physiology229(11), 1822-1830.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3994184/

Omega 3

12 Mohammady, M., Janani, L., Jahanfar, S., & Mousavi, M. S. (2018). Effect of omega-3 supplements on vasomotor symptoms in menopausal women: A systematic review and meta-analysis. European Journal of Obstetrics & Gynecology and Reproductive Biology.

https://www.sciencedirect.com/science/article/pii/S030121151830335X

Vitamin C & E

Support for Vitamin C & E

13 Doshi, S. B., & Agarwal, A. (2013). The role of oxidative stress in menopause. Journal of mid-life health4(3), 140.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3952404/

No support for Vitamin E (Note – an older paper and findings may be outdated)

15 Dennehy, C., & Tsourounis, C. (2010). A review of select vitamins and minerals used by postmenopausal women. Maturitas, 66(4), 370-380.

https://www.ncbi.nlm.nih.gov/pubmed/20580500

Vitamin D

14 LeBlanc, E. S., Hedlin, H., Qin, F., Desai, M., Wactawski-Wende, J., Perrin, N., … & Stefanick, M. L. (2015). Calcium and vitamin D supplementation do not influence menopause-related symptoms: Results of the Women’s Health Initiative Trial. Maturitas81(3), 377-383.

https://www.sciencedirect.com/science/article/pii/S0378512215006477

16 Lerchbaum, E. (2014). Vitamin D and menopause—A narrative review. Maturitas79(1), 3-7.

https://www.sciencedirect.com/science/article/pii/S0378512214001996

Zinc

18 Kim, D. E., Cho, S. H., Park, H. M., & Chang, Y. K. (2016). Relationship between bone mineral density and dietary intake of β-carotene, vitamin C, zinc and vegetables in postmenopausal Korean women: a cross-sectional study. Journal of International Medical Research44(5), 1103-1114.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5536545/

Vitamin K

19 Jaghsi, S., Hammoud, T., & Haddad, S. (2018). Relation Between Circulating Vitamin K1 and Osteoporosis in the Lumbar Spine in Syrian Post-Menopausal Women. The open rheumatology journal12, 1.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5842378/

17 Kim, M. S., Kim, E. S., & Sohn, C. M. (2015). Dietary intake of vitamin K in relation to bone mineral density in Korea adults: The Korea National Health and Nutrition Examination Survey (2010–2011). Journal of clinical biochemistry and nutrition57(3), 223-227.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4639586/

 

Black Cohosh

21 N.B. Old study – Borrelli, F., & Ernst, E. (2010). Alternative and complementary therapies for the menopause. Maturitas66(4), 333-343.

https://www.sciencedirect.com/science/article/pii/S0378512210002197

22 Leach  MJ, Moore  V. Black cohosh (Cimicifuga spp.) for menopausal symptoms. Cochrane Database of Systematic Reviews 2012, Issue 9. Art. No.: CD007244. DOI: 10.1002/14651858.CD007244.pub2.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007244.pub2/full?highlightAbstract=menopause&highlightAbstract=menopaus

 

Acupuncture

25 Dodin  S, Blanchet  C, Marc  I, Ernst  E, Wu  T, Vaillancourt  C, Paquette  J, Maunsell  E. Acupuncture for menopausal hot flushes. Cochrane Database of Systematic Reviews 2013, Issue 7. Art. No.: CD007410. DOI: 10.1002/14651858.CD007410.pub2.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD007410.pub2/full?highlightAbstract=menopause&highlightAbstract=menopaus

Chinese Medicine

23 Zhu  X, Liew  Y, Liu  ZL. Chinese herbal medicine for menopausal symptoms. Cochrane Database of Systematic Reviews 2016, Issue 3. Art. No.: CD009023. DOI:10.1002/14651858.CD009023.pub2.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD009023.pub2/full?highlightAbstract=menopause&highlightAbstract=menopaus

Non hormonal interventions e.g. SSRIs

24 Rada  G, Capurro  D, Pantoja  T, Corbalán  J, Moreno  G, Letelier  LM, Vera  C. Non‐hormonal interventions for hot flushes in women with a history of breast cancer. Cochrane Database of Systematic Reviews 2010, Issue 9. Art. No.: CD004923. DOI: 10.1002/14651858.CD004923.pub2.

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004923.pub2/full?highlightAbstract=menopause&highlightAbstract=menopaus

Cognitive Behavioural Therapy (CBT)

28 British Menopause Society – CBT for Menopause Fact Sheet

https://thebms.org.uk/_wprs/wp-content/uploads/2017/02/BMSfactsheet-CBT-for-HCPs-FINAL.pdf

27 Stefanopoulou, E., & Grunfeld, E. A. (2017). Mind–body interventions for vasomotor symptoms in healthy menopausal women and breast cancer survivors. A systematic review. Journal of Psychosomatic Obstetrics & Gynecology38(3), 210-225.

https://www.ncbi.nlm.nih.gov/pubmed/27832718

Vegan-Plant based diet

20 Beezhold, B., Radnitz, C., McGrath, R. E., & Feldman, A. (2018). Vegans report less bothersome vasomotor and physical menopausal symptoms than omnivores. Maturitas112, 12-17.

https://www.sciencedirect.com/science/article/pii/S0378512218300100

Exercise

26 Move Over Menopause – 5 reasons why this is the best time to exercise.

https://www.healthline.com/health/move-over-menopause-5-reasons-why-this-is-the-best-time-to-exercise#1

Alternatives to HRT and Cancer

29 Fritz H, Seely D, Flower G, Skidmore B, Fernandes R, Vadeboncoeur S, et al. (2013) Soy, Red Clover, and Isoflavones and Breast Cancer: A Systematic Review. PLoS ONE 8(11): e81968. https://doi.org/10.1371/journal.pone.0081968

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3842968/

30 Toi, M., Hirota, S., Tomotaki, A., Sato, N., Hozumi, Y., Anan, K., … & Ohno, S. (2013). Probiotic beverage with soy isoflavone consumption for breast cancer prevention: a case-control study. Current Nutrition & Food Science9(3), 194-200.

https://www.ingentaconnect.com/content/ben/cnf/2013/00000009/00000003/art00004

 

Use of Promensil in women with a family history of Breast Cancer

31 Atkinson, C., Warren, R. M., Sala, E., Dowsett, M., Dunning, A. M., Healey, C. S., … & Bingham, S. A. (2004). Red clover-derived isoflavones and mammographic breast density: a double-blind, randomized, placebo-controlled trial [ISRCTN42940165]. Breast Cancer Research6(3), R170.

http://www.evaluategroup.com/Universal/View.aspx?type=Story&id=151835

Some of the interviews

https://www.youtube.com/results?search_query=katie+Phillips+menopause+week+of+interviews

Katie Phillips (facilitator of week of My Menopause – interviews with menopause experts)

https://theschoolofself.love/

Celebrity Meno Stories

https://rejuvage.com/9-celebrities-speak-out-menopause/

Menopause Magazine

https://menopausematters.co.uk/magazine/

Vaginal Dryness

Importance of vaginal lubricant and vaginal moisturiser (with helpful product comparison)

32 Edwards, D., & Panay, N. (2016). Treating vulvovaginal atrophy/genitourinary syndrome of menopause: how important is vaginal lubricant and moisturizer composition?. Climacteric19(2), 151-161.  https://www.tandfonline.com/doi/abs/10.3109/13697137.2015.1124259#aHR0cHM6Ly93d3cudGFuZGZvbmxpbmUuY29tL2RvaS9wZGYvMTAuMzEwOS8xMzY5NzEzNy4yMDE1LjExMjQyNTk/bmVlZEFjY2Vzcz10cnVlQEBAMA==

Vulvovaginal Atrophy (VVA)

33 Treating vulvovaginal atrophy/genitourinary syndrome of menopause: Lubricants, Moiturizers and Vaginal DHEA.  Slides by Nick Panay, Imperial College London.

https://www.menopause.org/docs/default-source/agm/panay-n-2017-slides.pdf

 

Acknowledgements

Images: 

Unsplash:

Ice-creams – Mark Cruz -334535

Sheep – Sam Carter -191161

The Tor in Glastonbury – Hello I’m Nic -710394

New shoot amongst the dry – Stas Ovsky -632497

Two cups – Tom Crew -661269

Boy and microphone – Jason Rosewell -60014

 

Other images:

Four women – Menopause Musical – https://www.ents24.com/uk/tour-dates/menopause-the-musical-touring

Promensil picture 1 – me

Promensil picture 2 – https://promensil.co.uk/

Probiotics – me

Chillmax pillow – me

Article related pictures – me

Book – https://www.drnorthrup.com/

 

 

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

 

Posted in Menopause, Symptoms and Side Effects Tagged with: , , , , , , , , , , , , , , , , , , , , , ,

HRT cat v dog standoff
July 30th, 2018 by Janine
Boobs

I flashed my boobs to three women I barely know today.  Actually, it was less of a flash and more of mid-term exposure.  Sometimes I wonder if I have no dignity left or if an automatic behaviour kicks in; be matter of fact and ‘get on with it’. The women (a care assistant, chemo nurse and clinical trial doctor) were all female, super nice and respectful.  That helped. It’s funny, I notice I slip into, ‘put them at their ease mode’ even though it’s my boobs that are on display, being covered in sticky pads and wired up for an ECG.  I suppose it’s a way of making myself feel better. Happy medical team, more willingness to look after me, happy patient, me.

Hmmm…as happy as you can be after another day of hospital appointments: early morning blood test, five hours on the chemo ward, loads of waiting for drugs that should have been ready, sky high blood pressure, racing heart (hence ECG), and chemo. To top it off, boobs were touched up, not once, but three times, while there was a struggle to get the ECG set up and working properly.  The ECG that usually takes 5 minutes, took over 30 minutes and then, of course, I had to wait for it to be ‘signed off’ and for my blood pressure to come down, before I could escape.  Happy me.

Menopause (Meno) part two

Anyway…my boobs are back under wraps so this blog is again going to focus on Menopause.  Men, the decisions women must make about whether to put up with symptoms, how to find and interpret information about how to manage symptoms and decide what symptom management solution to choose, can be a full-blown, time consuming project.  It’s rarely straight forward. They may need your help and similarly, you may need theirs, if Andropause (Andro) impacts you.  Both Meno and Andro are especially tough, if you are living with cancer or the possibility of cancer recurrence (see Menopause Part 1).

This is my menopause discovery and decision story with hope that it shares useful sources of information and pearls of wisdom.  I am no menopause expert.  I have done a lot of leg work which I hope saves you and your significant others, time, and leads to your discovery of rapid, helpful, tailored solutions that work for you and the women in your life.  My discovery includes  growing ‘Meno’ communities offering understanding, support and a safe place to talk – hurrah!  Men, women, please do use this and my previous blog on Menopause, pass them on to your male and female friends and partners. Ask any questions you have.

 

DailyMailHeadline 300x126 - HRT v no HRT. One of many Menopause & Cancer standoffs.

Daily Mail Headline – Woman’s death related to Menopause

Women, please seek help, don’t put up with symptoms unless it is your conscious, measured choice to do so.  Don’t lose your life to Meno – yes – sadly – it appears, one woman may have experienced severe distress related to Meno, treatment, depression and difficulties with treatment1 (Caution – it is a Daily Mail report, though her diaries appear to have provided an insight into the woman’s pain and distress).

Tummy fat and grey hair

Remember, Meno symptoms are often super challenging.  They includie mood swings, hot flushes, night sweats, brain fog, short term memory loss, difficulty in finding words and stringing sentences together, fatigue, bone loss, low libido and vaginal dryness.  Others I didn’t mention that are also frustrating and challenge identity for many women, are the replacement of our luscious hair with a greying, coarser version (if chemo or living with alopecia hasn’t stripped us of hair already) and the addition of tummy fat (due to a loss of estrogen, see article).

Estrogen or Oestrogen

By the way, I should have said in the last post (and for those that don’t know) estrogen (also spelt oestrogen) refers to any of a group of steroid hormones which promote the development and maintenance of female characteristics of the body.2

Back to tummy fat

The arrival of tummy fat for women who have always exercised or been lucky enough to have slim tummies can be super distressing (though I don’t know one woman, whatever shape, loved or loathed, that welcomes tummy fat!!).  Add to that, Meno hormone changes can increase sweet cravings – oh joy, another challenge, especially when trying to keep sugar on the down low to prevent cancer.  There is good news; menopause symptom management solutions appear to positively impact tummy fat! At the very least solutions make it easier to exercise without feeling we will set the whole place on fire or internally combust.  Still, for some, supplements or hormone therapy won’t be the right path and an estrogen-loss based belly, may prove difficult to budge.

MMmM, Information Sources and Standoff

The Universe aligned to bring me different sources of Menopause information right when I needed them.  I know this has not been the case for many women; they have found it hard to find any information beyond their GP’s knowledge and the common offer of Hormone Replacement therapy (HRT).  Often, HRT, has only been offered if the women have been listened to, heard and had their symptoms taken seriously.

My medical team

I started out on this MMmM project (my new term for Multiple Myeloma and managing Menopause symptoms) by asking my medical team.  Like nutrition, gynaecology is not their world.  They are haemo-oncologists and don’t, and can’t, know about everything.  This is despite my expectation, wish, hope, that they would be fonts of all knowledge about any factor that might impact my cancer, treatment and living well with both.  The oncologists had very little information about Menopause and symptom management.  What they did have, was solely about HRT, did not consider alternatives and seemed out of date.  They did not have any specific info about Myeloma and Menopause.  I suppose on reflection, this should not have been surprising; Myeloma is still rare in women (it is predominantly associated with males of black populations in their 70s).

My oncologists disagreed!

One was pro use of HRT and the other thought HRT would be a bad idea. It would probably have been more apt to call this standoff, My Meno Brexit; one oncologist is English, the other European, and no agreement has been reached!  This difference has ended up being the lasting concern that has made final decisions difficult.

The female oncologist suggested HRT may be a good idea due to its bone protection properties.  The male oncologist was concerned that given the procedures such as stem cell transplant and additional chemotherapy I would be likely to need in the future, the addition of HRT could exacerbate the risk of secondary cancers turning up.

With this haemo-oncology, MyMenoBrexit standoff as the second layer in my context to making a menopause decision (the first being, wanting to find out what was a cancer or chemo symptom versus a menopause symptom) I sought more information on the pros and cons of HRT and alternative options (if there were any).

Other information sources used (see links at the end of the blog):
  1. Two appointments with a gynaecologist where I found out about some of the latest research, clinical guidelines, risks with HRT and opinions regarding Promensil (an alternative).
  2. The menopause exhibition I happened upon led me to info and samples of Promensil and Vaginal dryness/lube solutions (Sylk and YesVM and YesVB).
  3. A week of online interviews (approximately four each day) with Menopause experts (from both medical and holistic backgrounds) run by Katie Phillips.
  4. BBC Radio show about Menopause.
  5. Women in my life who suspected they were, were currently living with, or, had gone through perimenopause and menopause.
  6. Breast Cancer Now website.
The low down; My discoveries.

This and the next post are a brief synopsis of the wealth of information I gathered.  Although, it may feel a wee bit long in places, I have also tried to make it comprehensive enough to be useful.  If a natural, totally non-medical approach is your thing I recommend selecting and listening to the online videos of interviews with experts without medical training or with a holistic approach (link at bottom of the blog).  I listened to most of the interviews and was predominantly interested in experts who talked about research, evidence and their years of experience helping women manage menopause successfully.  This is what I found out…

Hormone Replacement Therapy (HRT)
  1. Works well (improved sleep, skin, mood, flushes) and low risk for many women
  2. Can reduce risk of heart, cholesterol and bone problems
  3. ‘Good bioidentical hormones’ versions (plant based rather than equine) are safer
  4. Consider gel or patches if impact on your liver is important to you
  5. Some cancers (e.g. hormone receptive cancers) can mean HRT is off the menu
  6. Despite the many pros, HRT won’t be everyone’s cup of tea 

There are a lot of misinterpreted research studies, obsolete data and unhelpful myths out in the world about HRT. For many women, especially women who start taking HRT earlier (before 50) and stay on it for a short period (4-5 years) HRT appears to have many more positives than negatives going for it.  It has few side effects and is not linked to getting cancer any more than being overweight, a smoker or drinking too much alcohol increases the risk of cancer, well breast cancer anyway.3 Here is a helpful graphic below showing this.

RiskofBreastCancer 212x300 - HRT v no HRT. One of many Menopause & Cancer standoffs.

 

However, it is very important each woman weighs up the risks for herself, talks with her GP, Gynaecologist and medical team (if being supported for cancer or other illness) before starting HRT.

For now, I really like Dr Louise Newson’s summary of HRT and the primary care women’s health forum useful graphic.4 Check out both here – dispelling HRT myths.

An official report (though not without controversy)

If you are interested in the academic, research reports, here is a link to The British Menopause Society & Women’s Health Concern 2016 recommendations on hormone replacement therapy in menopausal women.5 I find this report helpful because it summarises HRT research outcomes, risks and benefits relating to:

  1. menopause symptoms including hot flushes, mood, musculoskeletal and sexual function difficulties, and
  2. other important concerns including osteoporosis, cardiovascular/heart, cognition, cancer, post cancer, stroke, thrombosis/blood clots and premature ovarian insufficiency

The article also discusses pros and cons of different methods of taking HRT, pharmacological alternatives to HRT including Selective Serotonin Reuptake Inhibitors (SSRIs, often referred to in the media as anti-depressants) and doesn’t ignore the evidence for phytoestrogen solutions.  Phytoestrogen refers to a substance found in certain plants which can produce effects like that of the hormone oestrogen when ingested into the body.2

Transparency, risks and criticisms

I must let you know there has been some controversy about the recommendations for HRT and the National Institute of Clinical Excellence (NICE) guidelines (2015)3.  Some researchers and clinicians including oncologists have claimed the safety of the latest types of HRT have been exaggerated.  However, this criticism is also controversial and has been challenged!  Another standoff; there are quite a few kicking about in this world of Menopause!

Risk House cindy tang 25654 unsplash 300x200 - HRT v no HRT. One of many Menopause & Cancer standoffs.

Risk- House on the edge

HRT, breast cancer and risk
Making decisions

I’m sure you can imagine that the last thing I want to do, after undergoing treatment for Multiple Myeloma, is to then be diagnosed with breast cancer or any other cancer for that matter.  Worse, if I discovered that a decision that I had made, such as to take HRT, contributed to the likelihood of me being diagnosed with breast cancer and… I hadn’t taken time to learn about the risks or weigh them up beforehand, I suspect I would become angry with myself, feel sorry for myself, be disappointed and ultimately very, very sad.

If on the other hand, I become informed as best as I can at the time (i.e. now), weigh up the pros and cons, decide to take HRT and I still get diagnosed with breast or any other cancer, I would have to say I had done my best, it was not my fault. I’d attribute my new diagnosis to be being rather bloody unlucky at that point and hopefully summon some energy to discuss and embrace a treatment plan.

My way is not the right way for every woman

I recognise that some women (and men) would rather embrace a plan recommended by a specialist or medical team, without questioning it or researching alternatives.  Exercising faith that the right thing for them has been chosen and placing full trust in the people who spend time being the specialists in these areas, is one way of making decisions.  No one method of deciding what is right for me, for us, for your significant women, is better than another; it’s about what works for each of us individually.

With my current diagnosis of Multiple Myeloma, I am more at risk of other cancers6 (particularly AML and MDS) so I was interested in the criticisms of both the report’s recommendations about HRT and the NICE guidelines.

Criticisms

Among several criticisms, on a key concern, one side says ‘up to 7000 extra cases of breast cancer within ten years’ would result from women taking HRT while the other side (also seemingly experienced researchers and clinicians) back up the Women’s Health Concern report.  They argue that of 1000, 50-year old women in the UK, 23 would be expected to be diagnosed with breast cancer before they reach 60; however, if 1000, 50-year old women took combined HRT for 5 years, 28 would be expected to be diagnosed with breast cancer before 60 (an increase of five per 1000) and that taking estrogen alone is associated with even lower or no change in risk.7, 8

The Breast Cancer Now website have some very useful graphs that make risks easier to put in context.  They are based on data from the Breakthrough Generations Study that aims to find out what causes breast cancer (supported by Breakthrough Breast Cancer and The Institute of Cancer Research).  The graphs show that using combined HRT for fewer than five years leads to about seven extra women out of 1,000 to develop breast cancer between the ages of 50 and 54. 9,10

I have included a link to Breast Cancer Now, a link to a study about ‘the true size of the increased risk‘ and links to the write up of the controversy issued in Post Reproductive Health for you to make up your own mind.  I recommend reading all of it as you will see how the critiques were also critiqued!

Final note on this…while the stats talked about here relate to women, hormones and HRT please remember men are diagnosed with breast cancer and can experience challenges with hormones also.

HRT & Multiple Myeloma

Surprise! (ok, not really).  There is very little research available, particularly involving well powered studies (with enough participants for meaningful conclusions to be drawn) exploring the impact of taking HRT on the risk of Myeloma or Myeloma relapse.  That might explain why the haemo-oncology team were struggling!  One study with a summary of associations between reproductive factors and Myeloma (open about the caveats / limitations of their data), concluded that there is no significant role for reproductive factors or HRT related hormones in causing Myeloma.  So, if I was going to set my store by this study, I would assume HRT is unlikely to make my Myeloma worse or cause a relapse.11,12

What does all this risk data and controversy mean for me, for us?

At the end of the day we need to ask ourselves;

Whether you have or have had cancer or not; Will the benefits of relief from Menopause symptoms outweigh the risks of developing breast or other cancers?

Now, a few other things to consider (as if the long list above wasn’t enough already!)
Horse

Lovely horse called Prince

No horse for me please! 

Plants, horses, bioidentical hormones and HRT delivery mechanisms

I love horses, they are beautiful…and I simply don’t fancy any of their hormones inside me, thanks.  Years ago, ‘bad’ synthetic hormones seemed to be all you could get when it came to HRT.  Pills manufactured in a lab, based on hormones extracted from horses’ urine were given to women to help with Meno symptoms.  I hope GPs no longer prescribe such versions as apparently, the body finds it easier to break down plant based hormones.

These days, the reputation of bioidentical hormones (manmade hormones originating from plant oestrogens that are chemically identical to those the human body produces13) is becoming more positive, even ‘good’.  For some people, anything that goes near a lab is ‘unnatural’.  For others, a plant based hormone, structurally identical to those in humans, is natural enough.

Pill or gel or patch?

The other thing to think about is the form in which to take HRT.  A pill can be easy and easily tolerated by many.  Although, a pill does mean the liver needs to get involved and process it.  For those of us who for whatever reason need to be especially kind to our liver and not give it anything else to directly process/worry about (for instance as they continue with chemotherapy) a gel or patch delivery mode may be better.  In summary, if I decide to go with HRT, I will be asking for a good plant based bio identical hormone delivered via gel or a patch.

Let’s take a breather.

Need a breather?  I do.  Coming up in part 3; Alternatives to HRT, including ‘Take nothing’, Isoflavones and Phytoestrogens.  I will find an easy to understand description of what these are all about.  Before I go, a small bit about Tinnitus and an important bit about a fabulous group of women.

Tinnitus

HRT may help prevent tinnitus!  I wouldn’t know what to do with myself if I decided to take HRT and it ended up positively impacting my tinnitus.  I’d probably become evangelical about the stuff!  More about this here (or ‘ear’!) 14

The wonder of women

Last month, I managed to get away from hospital life for a few days and hang out with a fabulous bunch of straight talking, fun loving, wise, wonderfully womanly women.  They are  diverse: their ages, pasts, lives, loves, and losses.  They laugh a lot, are bound together by long standing, friendship and family, and friendship within family.  When they talk over the top of each other (yet still hear everything), squabble, give each other a hard time – the depth of love, caring, empathy, loyalty and commitment to being there for each other is still palpable.  It was a safe place to talk about health, a safe place to talk about menopause and a fab space to ignore both topics for a while.  A tonic.  You know who you are.  Thank you.

Share, like and comment please…

Please do pass the link to this blog on, like the PsychingOutCancer facebook page, ask any questions you have and do let me know….

  1. What has been the hardest part of your menopause or menopause with cancer journey?
  2. What have you discovered?
Kind_Grace_Thanks_Love_Swaggy

Swaggy

Articles and summaries:

Belly fat

https://health.usnews.com/wellness/articles/2018-04-06/what-causes-menopausal-belly-fat#close-modal

Symptoms, updates on HRT safety, antidepressants

https://health.usnews.com/health-news/health-wellness/slideshows/11-changes-women-go-through-in-menopause?onepage

1 Daily Mail reporting as it might be, her diaries provided an insight into the woman’s pain and distress http://www.dailymail.co.uk/news/article-5900653/Woman-hanged-struggling-cope-menopause.html

4Myths about HRT and info on Menopause generally – Dr Louise Newson https://menopausedoctor.co.uk/news/world-menopause-day-dispelling-hrt-myths/

Some of the interviews with menopause experts.

https://www.youtube.com/results?search_query=katie+Phillips+menopause+week+of+interviews

Katie Phillips (facilitator of week of My Menopause – interviews with menopause experts)

https://theschoolofself.love/

  

References, papers and guidelines

2 English Oxford Living Dictionary (July, 2018).

Definition of estrogen. https://en.oxforddictionaries.com/definition/us/estrogen

Definition of phytoestrogen.  https://en.oxforddictionaries.com/definition/phytoestrogen

3 NICE Menopause guidelines here https://www.nice.org.uk/guidance/ng23

5 The British Menopause Society & Women’s Health Concern 2016 recommendations on hormone replacement therapy in menopausal women http://journals.sagepub.com/doi/pdf/10.1177/2053369116680501

 

Criticism, support, risk and HRT

1 Post Reproductive Health http://journals.sagepub.com/doi/full/10.1177/2053369116629288  (second part of paper with numbers may require payment unfortunately re war of words and numbers – reference below)

Increased risk – true size  – Jones, M. E. et al. (2016). Menopausal hormone therapy and breast cancer: what is the true size of the increased risk? Br. J. Cancer, 115, 607–615  https://www.ncbi.nlm.nih.gov/pubmed/27467055

6https://www.cancer.org/cancer/multiple-myeloma/after-treatment/second-cancers.html

7 Brown, S. (2016). NICE menopause guidelines: A war of words and a war of numbers.  Post Reprod Health. 22(1):11-2.

8 Daily mail report referenced in S Brown’s NICE menopause guidelines: A war of words and a war of numbers. New HRT advice is biased and misleading

9 Breast Cancer Now – HRT and Breast cancer risk

http://breastcancernow.org/about-breast-cancer/want-to-know-about-breast-cancer/what-can-cause-breast-cancer/reduce-risk-of-breast-cancer/hormone-replacement-therapy-hrt-and-breast-cancer-risk?deep_link=hrt

10 Breast Cancer Now – HRT and Breast cancer risk – underestimated? http://breastcancernow.org/news-and-blogs/news/effect-of-combined-hrt-on-breast-cancer-risk-likely-to-have-been-underestimated

Breast Cancer Now website and Generations Study

http://breastcancernow.org/breast-cancer-research/our-research-projects/the-breast-cancer-now-generations-study

 

Myeloma and HRT

Second Cancers After Multiple Myeloma

6https://www.cancer.org/cancer/multiple-myeloma/after-treatment/second-cancers.html

11Reporoductive factors and Multiple Myeloma http://cebp.aacrjournals.org/content/cebp/early/2015/12/29/1055-9965.EPI-15-0953.full.pdf

12 Italian Study https://www.ncbi.nlm.nih.gov/pubmed/15554564  (note this study wasn’t corroborated by other, though smaller studies)

 

Bioidentical Hormones

13 https://www.netdoctor.co.uk/healthy-living/wellbeing/a28594/bioidentical-hormones-menopause-hrt/

Tinnitus

Hormone replacement therapy decreases the risk of tinnitus

14https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5929427/pdf/oncotarget-09-19807.pdf

 

Acknowledgements

Images: 

Cat_dog – Paul J Everett_standdown (Flickr and Creative commons_public use)

Horse (Prince) – me

Unsplash pics:

Swaggy – Christin-Hume

House – Cindy Tang – 25654

 

 

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

 

Posted in Menopause, Symptoms and Side Effects Tagged with: , , , , , , , , , , ,

Steam and Shower
June 20th, 2018 by Janine

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

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.

Divorce certificate

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.

Sleep vladislav muslakov 261627 unsplash 300x228 - Hot to Trot. NOT.  It’s Menopause.  Men, this is for you too.

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

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

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: , , , , ,

HAIR1 mohamed nohassi 531501 unsplash - Pulling my hair out
May 15th, 2018 by Janine

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.

IMG 0174 300x225 - Pulling my hair out

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

IMG 0173 300x225 - Pulling my hair out

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

IMG 0175 300x225 - Pulling my hair out

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.

Hair curls

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

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

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: , , , , , , , , , , ,

matthew henry 58760 unsplash dog - Mistake.  Give me my steroids, NOW!
April 18th, 2018 by Janine

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

Dexamethasone 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.

IMG 3222 e1524040080696 225x300 - Mistake.  Give me my steroids, NOW!

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

 chuttersnap 425090 unsplash mistake 300x200 - Mistake.  Give me my steroids, NOW!

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 loyalty3,4.  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.

estee janssens 418169 unsplash mistake 300x201 - Mistake.  Give me my steroids, NOW!

References:

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

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

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: , , , , , , , , , , , , , , , ,

jaguarcompactumbrella - Brolly Boo Hoo
April 9th, 2018 by Janine

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

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

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

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

Health status

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

Eulogy

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

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

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

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

Movie madness

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

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

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

We are under attack, by BREAD!

manki kim 378397 unsplash 300x200 - Brolly Boo Hoo

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

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

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

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

I miss my brolly.

Check out these articles

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

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

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

 

Acknowledgements:

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

Photo of sliced toast by Manki Kim on Unsplash

 

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

Posted in Nutrition for Cancer, Psychology for Cancer, Symptoms and Side Effects Tagged with: , , , , , , , , , ,

Smile for five minutes
October 18th, 2017 by Janine

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

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

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

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

I’m worth it.

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

 

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

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

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

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

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

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

 

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

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

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

 

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

 

Acknowledgements;

Editorial Support: Stephanie Kemp

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

 

Smile for five minutes

Posted in Psychology for Cancer, Symptoms and Side Effects Tagged with: , , , , , , ,

August 22nd, 2017 by Janine
fullsizeoutput f23 199x300 - Vampires, Angels and Twiki

Hooked up

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

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

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

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

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

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All the fancy stuff Twiki monitors

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

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

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

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

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

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

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

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

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

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

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Post collection rest

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

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

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

 

Psychology

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

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

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

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

 

Where to start?

I start by asking myself;

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

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

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

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

Hagger and Orbell pic of Leventhal CSM of illness 300x183 - Vampires, Angels and Twiki

Figure 1. Hagger and Orbell’s (2003) schematic representation of
Leventhal’s (1980) Common Sense Model of Illness (CSM).2

 

What do I ask next?

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

 

Stimuli

What am I experiencing?

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

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

What do I know about my illness?

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

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

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

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

 

Cause

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

 

Consequences

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

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

 

Control /Curable

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

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

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

 

Timeline

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

 

Emotions

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

How do I feel overall, right now, today?

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

 

Coping strategies

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

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

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

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

 

Appraisal of coping so far

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

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

 

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

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

Remember the aims of making the enquiry is to

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

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

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

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

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

Beedie Beedie.

 

References

 

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

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

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

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

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

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

Posted in Myeloma Treatment, Pain, Psychology for Cancer, Symptoms and Side Effects Tagged with: , , , , , , , , , , ,

July 19th, 2017 by Janine

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: , , , , , ,